Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Zaini on January 12, 2009, 04:13:11 AM

Title: Wish us luck !!
Post by: Zaini on January 12, 2009, 04:13:11 AM: Hi,

We are going to start Asunra for our daughter in a couple of days hopefully,i have so many concerns regarding this drug,i have a few questions to ask.

I think i should start her on the lowest dose first,i.e 20mg/kg,and after how long should i switch to the full dose of 30mg/kg,if she tolerates the low dose well.

I know Asunra has to be taken on empty stomach,but morning doesn't seem like very ideal time,because a short while after taking Asunra she'll leave for school,and then she gets off at 4 PM,so she'll be away for almost half day and i'd be worried sick if there is any thing wrong with her,i am planning to give it to her when she gets off from school,at 4 PM ,she takes her lunch in school at 1PM,so her stomach must be empty,is that alright?At the same time i used to give her IP6,should i continue it or change the timing for IP6?

Her hemo has asked me to test het creatinine levels,and SGPT before starting Asunra,my question is once she starts Asunra,how frequently should we be checking her creatinine levels? Every 15 days? Every month? Or every three months? Are there any other counts or levels to be monitored while on Asunra?

What side effects should i keep watch for? Rashes i know about,what else?

Her ferritin checked on 2nd jan was 1409,unfortunately it has increased from 1259,i don't know if it was a little bit of cold she had at the time of test or something else,our pump wasn't working very well either.

I know how important water is,as she spends most of her day in school,i am going to ask her teacher to make her take a sip every half an hour.

Any thing else i miss? please remind me,i hope Asunra will work well for us,Little Z herself is very eager to start Asunra as it would mean no pump :) .

Wish us luck,and thanks in advance for your replies.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 12, 2009, 05:10:21 AM: Zaini,

Best of luck my dear :goodluck

We give my son exjade at 6am and then we let him sleep until 7am. When he wakes up he has breakfast and I make sure he has a lot of fluid before going to school. We urge him to drink water at school and resume giving him water when he gets home at 4pm.

A few points to remember - do not use metal or clay cups and utensils while mixing exjade - we use a plastic cup and a plastic knife to mix it. I usually break the pill into tiny pieces, put in just a drop of juice and crush the pill against the sides of the cup with the plastic knife. Then I add the rest of the juice and mix it really well and have him drink it right away. I put in a little more juice if there is any residue left in the cup. He drinks this and falls asleep again.

Little A started taking 500mg (20mg/kg) of Exjade on July 30th. His dose was increased to 625mg on October 12th. It could have been possible for his dose to be increased sooner but we picked up the higher dose when my husband and I went to Oakland in October and started it then.

We were told to watch for a rash, little A luckily did not experience this symptom. He did however have a lot of nausea for the first few weeks but we do not know if this was because of some of the other treatments he had this summer or if it was exjade alone. At the time we were giving him exjade after he woke up - to alleviate this we began giving him exjade at 6am so that he could sleep for a while after taking it. Little A was actually on summer holidays when we began giving him exjade so we were able to watch him at home for a month before he began going to school.

Little A took his first dose of exjade at the clinic in Oakland - he was asked to not eat anything that morning - he was given a blood test before taking his first dose. They gave him his first dose and then took another blood 1 hour after giving him his first dose of exjade. These blood samples were looked at there and some were sent to Dr. Weatherall in the UK. I imagine that the purpose of these tests was related to their study.

Since this time, little A has a blood and urine test every 3 weeks. The following things are tested for each time:
CBC
Urine Protein
Urine Creatinine

Metabolic Panel including the following:
Sodium
Potassium
Chloride
CO2
Calcium
Glucose
BUN
Creatinine
Total Protein
Albumin
Bilirubin
SGOT / AST
SGOT / ALT
Alkaline Phosphatase
Ferritin

As for the water just have her drink it whenever you remember, every sip makes a difference. As you know, there may be a spike in her SF for a while. I wonder if this may not happen too much for Little Z because she has been on L1/desferal combination for a while so she may have less iron in her organs compared to other thal patients.

She may have some tummy ache for the first few weeks and she may lose her apetite for a while - but she will be okay after the first little while. We don't notice any other side effects in Little A - other than the unbelievable change in his skin color. IP6 had caused some skin color change - but exjade - OMG!! I have emailed you before and after pictures.

If I think of anything else I will let you know. Feel free to ask me any questions that you may have - you can PM me, email me and even call me - anytime.

I hope that everything goes very very well for little Z. I am also glad that she will have no more needles. I hope that she has no side effects and her iron levels drop quickly. God bless our little angel.

(http://msp90.photobucket.com/albums/k266/drparag81/good_luck.gif)

Sharmin
Title: Re: Wish us luck !!
Post by: maha on January 12, 2009, 06:26:51 AM: Hi Zaini
Wish u all the luck with Asunra. Sharmin has explained almost every little detail. In any case you will receive the type of tests and their frequency along with your prescription of Asunra. Asunra is best given on an empty stomach first thing in the morning. If you find this difficult you could give it at night three hours after dinner and see that she doesn`t eat anything afterwords. Don`t worry. Hassan did not experience any of the minor side effect also Alhumdulillah.

Sharmin, Why do you break the pill into pieces ??? They dissolve in minutes. Actually clear instructions are given along with Asunra that you shouldn`t chew, cut or break the tablet and one has to calculate their dose to the nearest whole tablet.

Another info Zaini
In India, when you buy three boxes of Asunra you get one box absolutely free. Do ask about it.
maha
Title: Re: Wish us luck !!
Post by: Andy Battaglia on January 12, 2009, 08:08:33 AM: Hi Zaini,

The official instructions for Exjade are, " Recommended initial daily dose is 20 mg/kg body weight, taken on an
empty stomach at least 30 minutes before food." It doesn't say it has to be morning. Morning is when people have an empty stomach but other times can work. Ambareen switched to night time to relieve the nausea she got. Each person is different, so find the method that works for her and best of luck to little Z.
Title: Re: Wish us luck !!
Post by: nice friend on January 12, 2009, 12:31:35 PM: (http://i153.photobucket.com/albums/s235/revmyspace2/graphics/greetings/good-luck/good-luck.jpg)
Hi zaini ,
its nice to hear that she is now going to start asunra , may asunra will play a big role to controle her ferritin and keep controled her ferritin in normal ranges ... best regards for you and litlle Z .
And a Message for Little Sis :
Hi Little-Z ,
Wish you all the best of luck for Asunra , i hope, wish n pray that you tolerate with Asunra 100% completely and no side-effect will come in your way to asunra .. i m happy to hear that you will never face the needles again for Desferal and that is wat most comforting and satisfying thing for your Bhayya Umair , hope that you will do way better with asunra than the desferal ... please be regular with your medicines and take your medicines on time ... Take good Care of your self as your mama is doing but it will be more happy moment for me when i will hear that now you are taking care of your self with your own effort.... Best regards, wishes and wish better than the Best of Luck ( means = best for everything in life ) ....

Take care
Umair
Title: Re: Wish us luck !!
Post by: Lyanne on January 12, 2009, 01:19:32 PM: Hi Zaini! goodluck! I hope it goes well ! :hugfriend
Title: Re: Wish us luck !!
Post by: Bostonian_04 on January 12, 2009, 01:56:12 PM: Zaini, Best of Luck to you and Little Zainab....

My daughter's hemo says that most people are tolerating Exjade well. so I am sure Zainab will be fine.

- Bostonian
Title: Re: Wish us luck !!
Post by: Sharmin on January 12, 2009, 01:59:09 PM: Quote
Sharmin, Why do you break the pill into pieces They dissolve in minutes. Actually clear instructions are given along with Asunra that you shouldn`t chew, cut or break the tablet and one has to calculate their dose to the nearest whole tablet.

Hi Maha,

I have been breaking the pill into pieces so that it would dissolve faster. I thought that the concern was to not have the patient chew the pill in the mouths, and to use the entire pill. (The pills here come in 500mg and 125mg that I have seen). I had spoken with our doctor in Oakland and he had felt that it was okay to break it into pieces before dissolving it - but thank you for brining it to my attention I will ask the technicians and perhaps they can check with Novartis (who is running this trial). I will let all of you know their response. Thanks again for bringing this to my attention.

I am glad to hear that Hassan is doing well with Exjade :)

Little Z,

May everything go very well for you!!

Love,
Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on January 12, 2009, 02:03:39 PM: Thanks Sharmin,Maha,Andy,Umair and Lyanne,

Your replies were really helpful.

Little Z weighs 27 kg,so her initial dose should be 540 mg,but for some reason her hemo gave us the prescription of 400 mg :dunno i intend to start with 500 mg,but Novartis sales person said he'll give us the medicine as prescribed,means a box of 400 mg tabs,he said if you want to give 500 mg then give a quarter piece of a tab along with a whole tab,but we can't give you anything other then prescription,getting a new prescription from her hemo is a new headache,so i think i'll go with his advice.

I only knew about creatinine levels to be monitored, CBC we do at every transfusion,which is more or less every 3 or 4 weeks,all other tests you mentioned,should i get them checked every three weeks? which one of them you think are MOST important?

Quote
As you know, there may be a spike in her SF for a while. I wonder if this may not happen too much for Little Z because she has been on L1/desferal combination for a while so she may have less iron in her organs compared to other thal patients.

I hope this would be the case,because elevated SF levels are scary,although we know they come down eventually.

As for time, right now i am going to start in evening,because she'll be at home after that,so i'll be able to keep an eye on anything she complains about.But please tell me what should i do with IP6? Is it ok to give it with Asunra or should i change the time?

Quote
Sharmin, Why do you break the pill into pieces They dissolve in minutes. Actually clear instructions are given along with Asunra that you shouldn`t chew, cut or break the tablet and one has to calculate their dose to the nearest whole tablet.

Unfortunately for now,i'll have to do that,untill the first box ends,or either i'll have to stick to 400 mg,which won't be enough,what do you guys think?

Quote
In India, when you buy three boxes of Asunra you get one box absolutely free. Do ask about it.

I'll check this with Novartis.

Thanks Umair for your comforting and sweet message :hugfriend.

Thanks everyone for your input,i'll definitely be needing more help and guidance in future.

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on January 12, 2009, 02:07:13 PM: Thanks a lot Bostonian :) I hope your little angel is doing fine :hugfriend.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 12, 2009, 02:16:42 PM: Hi Zaini,

This is the list of tests that the doctors in Oakland gave us. I think that it should be okay to do them before every tranfusion when you have the cbc done.

Give the IP6 at least 1/2 hour after exjade. This morning little A received his Exjade at 6am and I gave him IP6 at 7am - and he will have breakfast at 7:30am. I will give him another IP6 at 4pm and again at 9pm.

I think that it is a good idea to give her the exjade in the evening for now so that you can watch her for the first few days. That is a good idea with any medication. I know that she will do very well :)

Best,

Sharmin
Title: Re: Wish us luck !!
Post by: Manal on January 12, 2009, 05:05:48 PM: Zaini, wishing you all the best and i hope that it works good for our sweetie :hugfriend :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on January 12, 2009, 05:21:56 PM: Manal. :hugfriend

Thanks for wishes,we need them.

Maha,

Can you tell me the price of Asunra in India?

Zaini.
Title: Re: Wish us luck !!
Post by: Canadian_Family on January 12, 2009, 06:48:44 PM: Hello Zaini,

I thought I would give my two cents. My Daughter had a hard time taking Exjade in the morning, she was continuously nauseated throughout the morning and vomited in the class (They had to put the bucket right next to her). We were giving her Exjade one hour before the breakfast. After discussing with the doctor, we are now giving her Exjade two hours after the dinner just before sleep, this has actually helped the nausea and vomit problem. No matter what time you choose, please make sure the timing is consistent. One tip is to put the whole tablet in Juice (Apple or orange) atleast 20 minutes before consuming. We had found that eliminates the chalky texture of Exjade, and turn the mixture into a smooth liquid. Use glass or plastic utensils for preparing the Exjade.

We were also advised not give any other medication with Exjade, atleast two hours apart. I am not sure if supplements qualifies for that.

Watch for the color of feces (it may turn black/dark brown, which is a good sign).

Creatinine levels are checked monthly.

Drink 2L of water every day (as per doctor recommendation).

I don’t recall anything else, will update if it comes to me.

GOOD LUCK, I am sure Zainab will love to get rid of that ole’ stinking pump…. Bye Bye Pump.
Title: Re: Wish us luck !!
Post by: Dori on January 12, 2009, 07:07:34 PM: First Sharmin,

They have never test:
Metabolic Panel including the following:
Sodium
Potassium
Chloride
CO2
Calcium
BUN
Total Protein (I am not sure about this)

They do not talk about this in the instruction leaflet, do they?

But the instruction leaflet says it isn't allowed to break the pills. Why do you break them?

How I do it:

I put a glass of orange juice in the microwave untill it is warm. I take it out the micro wave and I drop the tablets in it.
Ok, I do not know of that is allowed. But. it really works fast :wink If someone ever contact Novartis, ask them about this :shy
At the other side, my father came with this truc and he should know it can or not, because his a chemist/physicst.

Today it was such day that I could not drink any tea after the 30 minutes and only one cup of tea in the hospital. When I was home I had a lot of cups of tea. Somehow you should manage it to let your daughter drink plenty enough of water. Mybelly hurts when I forgot that.

CF: I also think you should not take your supplement shortly after Exjade.

Also I believe that Exjade in the evening would be the best time for her. I think she can still feel nausea. I found out that I must to eat immediately after the first 30 min to avoid that. And I got some anti-nausea pills left from the heavy flu.

Bonne chance!!!

P.S. I do not remember the name, but there has been a new chelator which should come in trails in 2009. Suddenly they took it all back and they are back in one of the earlier stage of test. I try to say that they are still getting further with all the medical stuff. :)
Title: Re: Wish us luck !!
Post by: Manal on January 12, 2009, 09:25:01 PM: Quote
I put a glass of orange juice in the microwave untill it is warm. I take it out the micro wave and I drop the tablets in it.

Dore, the warm juice could have an effect on the exjade..the chemicals may change, i don't know but it will be better to use the juice at room temperature till you know for sure that this is okay

manal
Title: Re: Wish us luck !!
Post by: Sharmin on January 12, 2009, 09:30:18 PM: Dore,

Perhaps we have more tests done because we are part of a study and also because Little A is on combination therapy. The research team in Oakland has instructed us to do these particular tests.

We have been breaking up the pill because we find that it dissolves faster - and I thought (perhaps in error) that if the pill dissolves quicker then my son drinks it before it has a chance to be degraded by the medium that it is mixed in. The techs in Oakland have told us that the reason exjade is taken on an empty stomach is that exjade is very quickly degraded if mixed with food or drinks. We were told to mix it and have my drink it as quickly as possible so that the juice does not degrade the exjade. I will find out whether it is okay to break the pill up before placing it in the medium, in the meantime perhaps it is best for everyone to place the pill into the water/juice whole. When I spoke with the doctor in Oakland over the phone I had even asked him about the possibility of using a pill crusher (we have not done this). He said that he did not know of any reason not to do this nor did he recommend that we do it. He did not have an issue with us breaking up the pill however. I think that the warning is against chewing the pill because perhaps the saliva in the mouth may make the pill less effective. I also think that they want the pill to be taken in its entirety because exactness of dose is of concern. Again, these are my assumptions. I am not sure what breaking the pill can do to compromise the effectiveness of the pill - the pill breaks up once placed into the juice anyway. I will try to get information on this as soon as possible, and no one better to answer than Novartis.

I would be cautious about placing the pill into heated juice - I assume if anything that could alter the effectiveness of the pill. I would stick with cold or room temperature.

Zaini, again I am hopeful that everything will go well. You can take comfort in the fact that we have many 2 year olds on exjade and little A is taking exjade/desferal in combination. My prayers are with Little Z - and I am hoping that she will tolerate exjade very well and that her iron levels will drop.

Best,

Sharmin
Title: Re: Wish us luck !!
Post by: Sharmin on January 12, 2009, 10:04:46 PM: I have placed a query, I will post the answer as soon as I receive it.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on January 13, 2009, 03:36:28 AM: Hi Canadian Family,

Your two cents are very valuable for me :hugfriend Evening time sounds better right now,because she spends her day in school,so it would be difficult for me to keep a watch for anything unusual ( which hopefully won't occur) ,and i don't know if her school has a doctor present whole day,so they'll eventually call me,and her school is on 30 minutes drive from my place,so it's better that she'd be home when she takes it.Yes she is very eager to get rid of the pump,i hope that will be the case.

About the juice,which juice do you guys use? Fresh ones or carton packed,i am asking because when last time a doctor from Novartis came at our hospital he said " PLEASE DO NOT MIX ASUNRA WITH CARTON PACKED JUICES" i asked about the "Nestle Pure Orange" we have available here,which says no sugar and no preservatives? his answer was a big NO ,he said only home made freshly squeezed juice or water ( water he recommended is best).I am planning to dissolve it in the water first,then if she can't take it,i'll switch to home made juice.

Thanks Dore ,

For your input,plenty of water is my concern also,let's see how much she can take in.I would also advise you not to put the pill in warm juice as heat can effect chemicals.
We recieved our box of Asunra today,the leaflet inside is quite scary,but i can't help not reading it again and again :rolleyes to make sure that i understand everything and won't forget anything.I am hopeful that it will works as we have seen a few kids on the forum who are doing fine with exjade.

By the way,i couldn't find the instruction about NOT BREAKING the pill on the leaflet,it just says the tabs should not be chewed or swallowed whole,as Sharmin said the pill breaks up once placed in the juice anyway.

We have done tests for creatinine and SGPT and will recieve results in the evening,so Inshallah she'll take her first dose tomorrow evening.

Thanks Sharmin for posting the query,do inform us about their reply.

Zaini.
Title: Administering Exjade - Should you break it before dissolving it
Post by: Sharmin on January 13, 2009, 05:05:44 AM: Dear Zaini,

I have received a response to my query. I have been told that there is no logical reason for not breaking the pill before dissolving it in the medium. The only reason it is recommended to dissolve the whole pill in water/apple juice/orange juice is because this is the only way that it has been administered thus far. Although it may be completely safe to break and even grind it in a pill crusher - they cannot recommend it because it has not been administered this way in the studies.

When my son received Exjade in Oakland they dissolved it in juice from a carton so we have continued to do the same. After reading your post Zaini, I think that I will be making a few changes. We will now dissolve it in water and place it into the water whole :)

I believe Novartis is doing studies to determine other ways that exjade can be safely and effectively administered. I will post the results when I receive them.

Best of luck to my sweetie, little z :hugfriend :hugfriend

Sharmin
Title: Re: Wish us luck !!
Post by: Sharmin on January 13, 2009, 05:23:50 AM: Oh, by the way - little Z - I am also glad that you are saying goodbye to the pump. This is the change in thalassemia management that we can celebrate :)

Sharmin
Title: Re: Wish us luck !!
Post by: nice friend on January 13, 2009, 09:01:50 AM: Quote
Oh, by the way - little Z - I am also glad that you are saying goodbye to the pump. This is the change in thalassemia management that we can celebrate
ME TOO ! .. so pleasedont forget me when you are gona celebrate okiey .... :grin

@ zaini
i wana say that let her teacher to know that she needs to drink too much water soo please permissionn her to drink water in her class without sending her out side the class to drink water ..tell her teacher to remind her after every 30 minutes to take half gllass of water ( without going out side ) ... also tell Lil Z to ask if her teacher forgot to tell her to drink water ... and also that she need's to drink a lil more water than her regular/routine ... if her teacher wont to help in this case , just knock the door of principal's office, i hope principal will understand better and he/she will pass the order to all teachers of Lil Z .... i will share more if i got anyother idea ...

WISH YOU ALL THE BEST FOR ASUNRA !!.

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Dori on January 13, 2009, 11:04:25 AM: Hi,

Those leaflets are different! We will start with a course of Dutch. In the one I got is written that:
1) los de tabletten niet op in bruisende dranken of melk
2 Kauw niet op de tabletten, breek ze niet en*maak ze niet fijn*; I think they make a type mistake here: maaL ze niet fijn
3 Slik de tabletten niet in hun geheel door

1) Do not dissolve the tablets in fizz drinks or milk
2) Do not chew on the tablets, do not break them and *do not make them fine*; or do not crush them
3) Do not swallow the whole tablet

I want to say also something about the side effects. If your child never had a (bad) side effect from desferal, she will tolerate Exjade well.

I am deadly allergic for desferal. It took my breath at an evening in Oct/Nov 2006 and my whole skin turned into red ulcerates . I was at home with my mother at that time. When I started with Exjade three months later I started to get ALL side effects what are writting in the leaflet. I do not know of I had also a kidney failure at he time, because no tests were done. I decide to stop when I lost my sight. I lost the count, but if I am right then this is my 4th try.
(My ear tests came back as pretty good a few weeks ago)

My pharmacist told me that he believe that I only receive too high doses of desferal in a specific time. I still want to try desferal again, but no one is with me. I still prefer desferal above Exjade.

Btw does someone experiences tingles in their feet? I develop this thing after I started with Exjade. It really annoys me. It is like your feet does not get enough oxygen, but it is a bit different.
Title: Re: Wish us luck !!
Post by: Zaini on January 13, 2009, 02:38:27 PM: Sharmin, :hugfriend

Yes it would be time for celebrating,lets see how she does with exjade,and lets hope her ferritin will go down soon enough.I received her creatinine level and SGPT results.

Serum Creatinine = 0.6 mg/dl
Normal ranges are from 0.65 - 1.1

SGPT (ALT) = 22 IU/L
Normal ranges are from 3 - 33

So i guess these are normal ,right ?

Umair,

Thanks for the advice,i am going to ask her teachers to give her that favor ,i am sure they won't mind it.

Dore,

This is strange ,these leaflets should not be different,there is nothing about not breaking them or not crushing them written on the one i got.

I think i should stop ferriprox from tomorrow morning? As she'll recieve her first dose tomorrow evening.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on January 13, 2009, 02:56:03 PM: I was wondering; have Asunra and Exjade any other difference except the names?
This information has been always in the leaflet. But these packs of E. have a bigger leaflet with more information, i think. It says that the last update was in July 07,but I believe it must be 08.
Btw, with the change I could also see where they came from. They are from the UK and they coming from exactly the same place as deferiprone! (L1, ferriprox, kelfer)

I have homework for all members: read the leaflet very good and tell me of they wrote something about 'not crushing the pills' ? :)
Title: Re: Wish us luck !!
Post by: Andy Battaglia on January 13, 2009, 06:20:05 PM: The reason you will see different inserts with the meds is that there are different requirements in every country. Exjade is manufactured by Novartis and Asunra is manufactured by Novartis India. They are produced for different markets in different countries and each will have different info included, depending on the requirements of that country. For example, the information required in Canada is the most in depth for Exjade, and includes information not seen in other markets. This information can be seen in our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=1928.msg16165#msg16165

The Canadian information includes reports about deaths in Exjade users with prior kidney and liver disease. Any patient with a history of these diseases should be closely monitored while using Exjade.
Title: Re: Wish us luck !!
Post by: Zaini on January 14, 2009, 03:11:01 AM: Quote from: Andy on January 13, 2009, 06:20:05 PM

The Canadian information includes reports about deaths in Exjade users with prior kidney and liver disease. Any patient with a history of these diseases should be closely monitored while using Exjade.

Reports about deaths due to renal or hepatic failure are included in our leaflet too,and that was the most scariest part,this gives a little comfort though,that those patients had prior kidney or liver damage present.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 14, 2009, 04:36:36 AM: (http://i116.photobucket.com/albums/o26/digitalicing/ClipArt/four-leaf-clover.gif)
Good luck Little Z
Title: Re: Wish us luck !!
Post by: Zaini on January 14, 2009, 05:59:59 AM: Thanks :hugfriend :hugfriend :hugfriend

She'll take her first dose today.

Zaini.
Title: Re: Wish us luck !!
Post by: Smurfette on January 14, 2009, 10:52:10 AM: Wishing you all the luck!!!!

Can I just comment on this too....

Before stopping Exjade, I used to take it at 5pm, just as soon as I got home from work... My mum would put it in the cup and dissolve it for me with some room temp water...

I took it about 1 hr before dinner, cause taking it later at nite meant that I had to wait later to go to bed, so I asked if it can be taken before dinner and my heama said yes and so did my clinical nurse...

Get little Z to drink plenty of water and make sure that she is eating well...

I am the only patient here in sydney that I know of that it didnt agree with me... Maybe cause of what my body has been through and didnt have a proper break from me being sick last august/sept. Not sure... But I did give it a go...

I hope this helps and keep us posted..

With love and :hugfriend
Title: Re: Wish us luck !!
Post by: nice friend on January 14, 2009, 11:59:03 AM: Good Luck lil Z for the first dose of asunra , how was the experience of first does ,i hope that it was gr mi right ??

Best regards
take care
Umair
Title: Re: Wish us luck !!
Post by: Zaini on January 14, 2009, 12:10:09 PM: Thanks Theodora :hugfriend

Every opinion and every advice is so valuable for us right now,i have told Little Z that you'll have to drink a lot more water once you start Asunra,she is so eager to start it that she was like " lots of water !! no problem !! " she kept drinking water again and again :) even before taking Asunra .

Umair,

Thanks for remembering ,she took her first dose just minutes ago,she had no problem in taking it in water,it's totally tasteless.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on January 14, 2009, 03:17:35 PM: Good Luck Lil Z :goodluck
Title: Re: Wish us luck !!
Post by: Canadian_Family on January 14, 2009, 03:22:29 PM: Quote from: Peartree Girl on January 13, 2009, 02:56:03 PM

I have homework for all members: read the leaflet very good and tell me of they wrote something about 'not crushing the pills' ? :)

Hi Dore,

I tried my best to complete the homework but every day when I go home I forgot, but thanks to Andy's link to Exjade leaflet, it clearly indicates on page 19 that the tablets must not be crushed. It also indicates that the tablets can be dispersed in water, orange or apple juice (there is no distinction there of the medium) and than wait for the full dispersion to obtain the fine solution.

Thanks.
Title: Re: Wish us luck !!
Post by: anjjela on January 14, 2009, 05:13:49 PM: Best of luck to little z

thanx to manal again for putting me up to this knowlegable thread..

i also started with Asunra...yesterday was my first day...so this thread helped me in knowing a lot abt Asunra plus the leaflet i got in the box of tablets gave a lot of information..
you wanted to know the prices of Asunra in India

i got a
box of 100mg 6 tablets/strip 5 strips+1( free issue) =1100.00

box of 400mg 6 tablets/strip 5 strips+1( free issue) =3300.00
4400.00 +176.00(Vat payable)= Rs. 4576.00
Title: Re: Wish us luck !!
Post by: Sharmin on January 14, 2009, 08:48:52 PM: Hi Zaini,

I hope that Zainab continued to feel well after taking exjade. Was her stomach a little 'off' ? Hopefully she felt great.
(http://thereflectingskin.files.wordpress.com/2008/03/s_glass_of_water.jpg)
Keep drinking lots and lots of water Little Z
Title: Re: Wish us luck !!
Post by: Manal on January 15, 2009, 01:27:30 AM: anjjela

You are welcome :hugfriend, i am happy that you found it useful

Zaini

Little Z will be just fine, i am so sure :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on January 15, 2009, 12:33:51 PM: Thanks everyone :hugfriend

Little Z is fine Alhumdulillah,no complain yet :) , took her second dose today,point to consider is that she is on extremely low dose,15 mg/kg,i am not expecting any positive change in her ferritin,but i hope it won't spike scarily .

I asked her doctor to let her start with 500 mg,but she said no :( , said just let her start then we'll increase the dose if she tolerates it well.

Let's hope for the best. :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on January 15, 2009, 08:05:50 PM: Thanx God Lil Z is fine and feeling well , i hope she wil well tolerate with asunra in future and she will b able to tolerate 30mg/kg dose as welll ...

Lil Z :
You are in my prayers Lil Sis ....

Best Regards
Take care
Umair Bhayya
Title: Re: Wish us luck !!
Post by: Zaini on January 16, 2009, 03:16:11 AM: Thanks for your prayers Umair,we need them,and little Z is also praying for you so you can leave pump and start using Asunra,

Getting rid of pump is a big relief.

Zaini.
Title: Re: Wish us luck !!
Post by: jade on January 17, 2009, 05:56:53 AM: Congratulations for starting Asunra. Hopefully everything will be fine until the required dosage is met. take care of your little treasure. Give Zainab a big kiss for me and tell her she is very lucky to have such a caring mother.

Jade
Title: Re: Wish us luck !!
Post by: Zaini on January 17, 2009, 07:08:37 PM: Thanks Jade :hugfriend

We do need all the wishes right now and ever :) .

Zaini.
Title: Re: Wish us luck !!
Post by: maha on January 18, 2009, 05:10:18 AM: Hi Zaini
Couldn`t reply to your post earlier as I was away for umrah. Anjjela though did mention the price at which she purchased Asunra. I am surprised that prices vary in the same country. I get a box of 100mg at RS 1335 and a box of 400mg at RS 4015 plus vat and for every three issues I get one free.

Hope Zainab is doing good. Glad that she doesn`t mind taking it with water. I still remember Hassan`s face when I first gave Asunra mixed with water.
take care
maha
Title: Re: Wish us luck !!
Post by: Zaini on January 18, 2009, 10:52:37 AM: Thanks Maha,

Actually there is a bit of difference of value in Pakistani ans Indian rupee,so price is almost the same,if you are getting it via India,why don't you desirox,it's a bit cheaper then Asunra,Cipla is in process of getting desirox registered in Pakistan,so hopefully it will be easily available in Pakistan too.
I also tried to contact Osvah Pharma in Iran to know their prices,but never got a reply.

Quote
Glad that she doesn`t mind taking it with water. I still remember Hassan`s face when I first gave Asunra mixed with water.

Hassan is quite younger,so maybe ,that's why ,give him a big kiss :kissy

Zaini.
Title: Re: Wish us luck !!
Post by: maha on January 18, 2009, 11:12:08 AM: Zaini
My hema recognises novartis but not cipla. Moreover novartis has its office very close to home, so its easier for my brother to get it for me.I am very thankful that Hassan atleast finishes his glass of juice without fuss as this is quite a problem with little kids, making them drink all the medicine. My trouble starts after he finishes his Asunra, to keep him away from eating anything for half an hour. During weekends when dad and sis are at home, no one gets breakfast until Hassan is able to eat.
take care
maha
Title: Re: Wish us luck !!
Post by: Bostonian_04 on January 19, 2009, 08:10:33 PM: Zaini,

How is little Z ddoing...it is almost a week on exjade?

Wishing her all the best ....
Title: Re: Wish us luck !!
Post by: Alia on January 19, 2009, 08:32:09 PM: hi zaini
sara has been takig exjade from year in half now. i have not noticed any side effects apart from her stomich. At the start she was having stomich ace all the time. now she has it somtimes. they check her vision and hearing every month she all right so far.
it importent for zainab to get all her tests done at least every six monthes. good luck with the new drug.
alia
Title: Re: Wish us luck !!
Post by: Zaini on January 20, 2009, 03:04:51 AM: Thanks Bostonian and Alia, :hugfriend

Little Z is doing fine Alhumdulillah,she complains of a mild stomach ache in the morning but she used to do so before asunra too,so i am not sure if it's relative.

The thing thats getting difficult day by day is making her drink lots of water,after first few days,now she forgets easily that she has to drink more water :( yesterday she came back from school with her bottle half full,and her school is from 8 AM to 4 PM,meaning 8 hours.

On the other hand i was just watching her yesterday and was thinking that drugs like exjade or asunra can have a lot of psychological impact too,not directly but indirectly,after 4 years of being on pump,she is very happy to stop it,she says i can play more now when i don't have to watch time to start pump,I told her that she is very lucky,there are people who have spent their lives with pumps.I wish every thal patient will get rid of needles one day.

Much love :rotfl

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 20, 2009, 03:05:29 AM: Zaini,

I hope that things are going well with exjade.

Sharmin
Title: Re: Wish us luck !!
Post by: nice friend on January 20, 2009, 12:46:44 PM: BEST WISHES FOR LITTLE Z ....... :goodluck

Umair
Title: Re: Wish us luck !!
Post by: Zaini on January 20, 2009, 04:51:01 PM: Thanks Sharmin and Umair :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 20, 2009, 04:55:56 PM: Zaini,

Just make sure she is eating well despite the tummy ache. Little A tends to lose weight because his appetite has decreased so I really have to keep an eye on him. I find that he does not eat as much as he used to at once so I offer him more snacks while he is doing his homework etc.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on January 21, 2009, 03:02:05 AM: Sharmin,

Her eating is fine Alhumdulillah,she is not complaining all the time ,just in the morning,and today i noticed that it's not every morning she complains,and she used to complain of tummy ache in the morning even before starting Asunra,the pattern is same.

I am just anxiously waiting to increase her dose,15mg/kg is extremely low dose and it's bound to increase her S.F levels,i wonder if her hemo would give me a prescription after she completes her first 15 days.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 21, 2009, 03:51:10 PM: Zaini,

I am glad to hear that. Eating and drinking well is very important when taking exjade. I think that little A's stomach was upset by some of his treatment this summer - when he wasn't able to eat anything for days. The doctor thinks that when something like that happens it takes a while to get into good habits again. Breakfast became tough for a while but things are much better.

Little A's dose was 500mg from July 30th to October 12th (about 2 1/2 months). During this time the tests (metabolic rate, creatinine) were done a few times and that gave the doctors in Oakland the confidence to increase the dose to 625. I wonder if they waited this amount of time because they knew we would be back in October and so they decided to wait - or if in fact they wanted to see how he did on the lower dose for a while. I think that 15 days isn't long enough to observe how she is doing on the lower dose - she needs to have at least one or two blood/urine tests before her dose is increased.

When his dose was increased from 500mg to 625mg we did not notice any difference at all - so if little Z is tolerating the lower dose she will do fine with the full dose too.

I do agree with you that the lower dose may no be helping with her ferritin levels, and in her case because she is not on any other chelator her ferritin may go up a little while she is on this lower dose. However, as this is the process by which all new patients begin using exjade (starting with a lower dose) I think that this short period of time will not affect her in the long term.

Wishing the little princess all the best,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on January 21, 2009, 05:37:56 PM: Yes i also think i'll wait for a month,finish the box,will do all the necessary tests and the will ask her hemo to increase the dose.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 22, 2009, 07:12:42 AM: Zaini,

While she is on the lower dose of exjade - the IP6, carao and other antioxidants that she is on will bind free iron and protect her. If she gets IP6 at least twice a day that will be great. Dr. Vichinsky was convinced of the ability of antioxidants such as IP6 to bind free iron. Carao, along with protecting red blood cells and possibly affecting their effeciency - is also a strong antioxidant and in that way may provide protection from iron for thals.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on January 22, 2009, 09:08:17 AM: Sharmin,

Yes she is taking IP6 twice daily,along with carao,and to some extent i think carao is also effecting her transfusion intervals,but it's quite expensive for us,i wonder for how long i'll be able to get it.
She is also taking Vitamin E 400 IU.
Zaini.
Title: Re: Wish us luck !!
Post by: KHALIFA on January 22, 2009, 04:22:07 PM: alhamdulilah rab ala'alameen

khalifa
state of kuwait
Title: Re: Wish us luck !!
Post by: Zaini on January 22, 2009, 06:09:33 PM: Indeed "Alhumdulillah Rab al Alamieen" .

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 09, 2009, 09:54:30 AM: Tomorrow we have an appointment with my daughter's hemo,all the tests will be done today,we'll be doing CBC,Ferritin,Serum Creatinine,SGPT,Urine Protien and Urine Creatinine.
Any thing else i should ask for?
Three tabs of her frist box are still left but i am doing it a bit early because i need a prescription from her hemo to get another box,since hopefully we'll be increasing the dosage,and she won't give me any prescription unless i show her the results.And Novartis people told us that it's better to order the med 2 days before,so i will get the prescription tomorrow and will call them immediately,and will recieve the med after two days,that's how Little Z won't have to go with out any chelator even for a single day.
Once again,wish us luck :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on February 09, 2009, 09:57:04 AM: Zaini, little Z is in my prayers, please update us and good luck :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Sharmin on February 09, 2009, 03:40:09 PM: Zaini,

I am wishing you and little Z good luck. I hope that all of her tests will be perfect - she has done very well so I just know that her tests will be great.

Best of luck dear,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 09, 2009, 04:39:09 PM: Thanks Manal and Sharmin, :hugfriend

I will update you as soon as i get the results.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 10, 2009, 02:00:37 AM: Hoping our little Angels results are great.
Wishing you luck my little Z :)
(http://i203.photobucket.com/albums/aa249/illpic/Goodluck/g3.gif)

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2009, 08:22:12 AM: Thanks Sharmin :hugfriend

A quick note,We will see my daughter's hemo in two hours,i called lab to find the results,her serum creatinine is 0.6 which is well with in range and exactly the smae as it was before starting Asunra,but her SGPT is elevated, it was 22 before she started Asunra and now it's 45,normal range is till 33,i am quite nervous i don't what her hemo would say.

Andy,

What do you think? what should we be doing? Stop Asunra? go on with the same dose? Or increase the dose? Do you think these elevated levels are dangerous ? Her ferritin is almost the same,it was 1409 before starting Asunra and now it's 1441.

I am waiting anxiously for your replies.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on February 10, 2009, 08:40:20 AM: My bad results did correct by themself. I hope they will do the same in your daughter's case. Maybe you can do an other test next week?
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2009, 08:49:48 AM: Dore,

Were you on the same dose after bad results or you cut down the dose?

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on February 10, 2009, 08:58:24 AM: Hmm, I think I was taking 875mg. I hope I have the right word for sgpt in my mind. here stands sgpt for?
Did she drink enough water?
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2009, 09:07:14 AM: SGPT is indicator of liver function,i think i'll have to wait and re check it again.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on February 10, 2009, 09:09:44 AM: Yes, i was talking about the liver function. Do something relaxing before you go to the doc and dont worry too much. :hugfriend
My fingers and toes are crossed!!! :thumbsup :goodluck
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2009, 09:13:55 AM: Thanks a lot Dore :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2009, 12:33:45 PM: Hi,

I went to my daughter's hemo and she said that SGPT is very slightly elevated so we can increase the dose and there is nothing to worry :dunno she increased her dose very slightly though,from 400 to 500 mg daily and said if everything remains fine we should increase another 100 mg after a month.

As for genotyping she said it's very expensive so it's hard for hospital to do it every time,yes if any patient develops any reaction then lab will do extended matching :dunno.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on February 10, 2009, 02:12:23 PM: I am glad she believes it is fine. Btw is Asunra made in other mg? Exjade has only tablets of 125mg, 250mg and 500mg.
I am not sure of the hospital does genotyping. I think it goes autmotical, because all nurses mark other names on the special rose transfusion form. For me it is a big mystery.

Good luck with the new dose!!!

p.s. I just read your mess. at fb.
Title: Re: Wish us luck !!
Post by: maha on February 10, 2009, 03:21:34 PM: Hi Zaini
I am glad she increased the dose, that should atleast rest your mind a wee bit. Dose adjustments in Asunra is made in 5-10mg/kg.

Zaini, genotyping is done only once, so why did your doc say it is too expensive to do it everytime ???

goodluck with the increased dosage
maha
Title: Re: Wish us luck !!
Post by: Sharmin on February 10, 2009, 03:23:42 PM: Zaini,

I am glad that everything is okay and that the doctor felt that it is fine to increase her dose. I am glad that the doctor did not feel that her SGPT level was not very elevated either. It is good to see that her ferritin isn't elevated and that she is doing well.

I hope that she does well with 500mg and that they are able to increase it next month.

Best,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2009, 03:48:22 PM: Thanks Dore ,Maha and Sharmin,

I just hope that her SGPT will not elevate further,now i remember Mariam had the same problem with Aysam .I hope it will becaome normal very soon.

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 10, 2009, 03:48:52 PM: Hi Zaini,

The normal SGPT (ALT) range is up to the low 40's, so little Z's range is only at the high end of normal. ALTs will often rise with Exjade and do need to be monitored to make sure they don't go to high, but currently this is nothing to cause alarm. it's one of those things, like the rash, that many patients experience early on with Exjade. Your doctor will tell you if it rises high enough to be of real concern.
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2009, 03:50:48 PM: Thanks Andy,

Her doctor said we should repeat Serum Creatinine and SGPT after a month,and right now it's ok,we'll have to see what happens when we gradually increase the dose.

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 11, 2009, 12:23:02 PM: Little Z came back from school with fever and sore throat,is it ok to give her Asunra ? :wah

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 11, 2009, 02:03:44 PM: Should we be checking her for cytopenia?
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 11, 2009, 02:41:56 PM: Zaini,

I can find no precaution against taking Exjade during a cold in the Exjade prescribing information. Desferal may be unique in this matter because it promotes bacterial infections like yersinia. I don't believe this is a concern with other chelators.

And yes, patients on Exjade should have regular white blood cell counts done.
Title: Re: Wish us luck !!
Post by: Zaini on February 11, 2009, 02:44:58 PM: Thanks Andy,

I also tried searching for it but didn't find anything.

We did CBC on 9th feb and it was normal,i guess i'll get WBC count checked again.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 11, 2009, 04:19:05 PM: Zaini,

I hope that Zainab feels better very soon. We continue giving little A exjade when he is sick. Remember, viral illness can cause neutropenia in all children - neutrophils can bottom out (0.0) followed by a quick recovery - usually within a day or two.

I hope that she gets through this cold quickly - I will be checking the board from Oakland to see how things are going.

Take care Zaini,

Sharmin
Title: Re: Wish us luck !!
Post by: maha on February 11, 2009, 04:56:09 PM: Hi Zaini
From the time I started Asunra Hassan`s fallen sick a number of times. Once he was even admitted for antibiotic IV, but I didn`t miss Asunra even for a day.
wishing Zainab a speedy recovery
maha
Title: Re: Wish us luck !!
Post by: Zaini on February 11, 2009, 06:44:51 PM: Thanks Sharmin and Maha,

I remembered that Little A fell sick but Sharmin didn't stop exjade,so i gave her Asunra anyway,the strange thing is that GP told us that there is no severe kind of infection in throat or chest that could be attributed to fever of 104 degree,so he suggested CBC to check Nutropenia,results will be available by tomorrow afternoon,i hope till then she'll be feeling better.

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 11, 2009, 07:05:52 PM: Zaini,

Cough, sore throat and fever are all listed as early side effects when first taking Exjade so there could be a connection.
Title: Re: Wish us luck !!
Post by: Zaini on February 11, 2009, 07:13:26 PM: Thanks Andy,

Lets see if there is any difference in her counts tomorrow,she is very disturbed even in her sleep ,although fever is a bit low as i gave her Febrol,GP said we should wait for the report before starting any antibiotic :dunno.

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 12, 2009, 03:11:46 AM: Her fever is down to 101 degree,i hope it will vanish soon.

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on February 12, 2009, 01:54:30 PM: Zaini, i hope she continue's to be fine. Please update us with the results and a big hug for her. Zaini,please don't for get givng her a lot of water

manal
Title: Re: Wish us luck !!
Post by: Dori on February 12, 2009, 02:57:03 PM: I hope she feels better soon. As for the water: try to give her (instant) vegetable broth for the minerals. :getwell
Title: Re: Wish us luck !!
Post by: Zaini on February 12, 2009, 04:44:24 PM: Thanks Manal and Dore,

She is fine Alhumdulillah,fever is gone,and she is jumping up and down again :jumping I got her CBC results and every count is with in normal range except Lymphocytes which were only slightly low ( 18%,normal range is from 20 to 45 %),so i don't know if they can wreck such a havoc in body,Eosinophils,Neutrophils and monocytes are normal,anyway big relief is that fever is gone now :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 12, 2009, 04:47:28 PM: Good to hear she's back to normal. :biggrin
Title: Re: Wish us luck !!
Post by: Zaini on February 12, 2009, 04:51:57 PM: Thanks Andy,

And thanks everyone for your constant support. :grouphug

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on February 13, 2009, 02:47:26 AM: Hi Zaini Sis ,
its realy nice to hear that she's coming back to normal's thats a super good sign and she will reach the normal levels very sooon Good luck to you and lil Z .

Best REgards
Best wishes
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on February 13, 2009, 02:52:43 AM: Zaini,

I am so glad to hear that she is doing better :)

hugs and kisses to the little angel,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 13, 2009, 03:26:43 AM: Thanks Umair and Sharmin,

She is well Alhumdulillah and off to school now,she'll be taking her first dose of 500 mg of Asunra today,i hope all goes well,so we'll be able to increase her dose to 600 mg after a month,i'll repeat Serum Creatinine and SGPT after a month before starting the dose of 600 mg.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on February 14, 2009, 04:46:00 AM: Hi Zaini Sis ,
How is Lil Z now ?, i hope she will b fine and enjoying the pleasent winter's rainy weather . please keep us updated ,.... Best Wishes for her dose icreasement of Asunra , I pray that it will b a routine day and all will run smoothly and she will tolerate with increased dose as welll ....always praying for her .

Best Regards
Take Care
Umair Bhayya
Title: Re: Wish us luck !!
Post by: Sharmin on February 14, 2009, 04:43:27 PM: Hi Zaini,

How is our princess doing? I hope that everything is going well.

Love,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 14, 2009, 06:30:36 PM: Thanks Umair and Sharmin,

She is well Alhumdulillah,we switched her dose to 500 mg and till now nothing seems to be wrong,i hope it will stay the same.

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on February 15, 2009, 12:11:11 AM: Good luck Zaini, i hope everything will just go the way you want :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on February 15, 2009, 09:09:29 AM: Thanks Manal, :hugfriend

I am praying for same,i hope one day i'll be able to see her ferritin below 500.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on February 15, 2009, 12:48:45 PM: INSHA-ALLAH ( if God wanted ) you will see her Ferritin below 500 very soon , BEST OF LUCK Sis , and best of luck for lil-Z as well .... :goodluck

Always praying
Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Zaini on February 15, 2009, 12:50:02 PM: Thanks Umair :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 22, 2009, 07:06:16 PM: Hi Everyone,

As we heard about low phosphorus in patients who are using exjade,keeping that in mind,we tested Little Z for phosphorus levels,and her levels came back slightly low.Its 3.7,while normal levels start from 4 to 6.3.So what should i do to increase these levels,i know they are slightly low but i don't want them to drop further.

Thanks,

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 22, 2009, 07:37:48 PM: Zaini,

See this link for dietary sources of phosphorus. http://www.healthyeatingclub.com/info/books-phds/books/foodfacts/html/data/data5f.html

Meanwhile, continue to look for a calcium supplement that also contains trace minerals.
Title: Re: Wish us luck !!
Post by: Dori on February 22, 2009, 10:19:09 PM: Hey, I wanted to wish your daughter good luck. I am glad to hear that this type of meds are not very hard for me.
I have not ask for this tests. Whatever it cost I wont stop taking Exjade though. If my appetite is back in the middle of the week I will increase the dosage to 1500mg. Does it work to take those meds in the evening? Does she take enough water? I will try the fennel seed trick :wink

My fingers and toes are crossed for littl Z, a bit older me and all the other who are trying to get the ferritin down!!!!

Sleep well, Dore
p.s. it might be an idea to do something special when she reach at 2000....?
Title: Re: Wish us luck !!
Post by: Zaini on February 23, 2009, 03:14:36 AM: Thanks Andy,

Its hard to find good supplements here,as doctors don't prescribe themselves,still i'll keep looking.

Dore,

Thanks dear,i am trying my best to force her to take water,but almost half of the day she is at school,but still its a relief that her bottle is empty when she comes back from school,she is actually taking the medicine in evening.Her ferritin last checked was 1441 ng/dl .

Good luck to all people who are chelating and trying to get their ferritin down. :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 23, 2009, 03:00:15 PM: Andy,

Shouls i check Little Z for Cytopenia everytime she gets fever?

She has got fever again :( .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 23, 2009, 03:04:45 PM: Zaini,

I have not been checking Little A for cytopenia when he gets a fever . I was told by Oakland and by our pediatrician here that the sudden neutropenia he experienced with a virus the one time had to do with the virus and that Exjade has never been associated with neutropenia. I was told that any child having particular viruses can have the sudden neutropenia with quick recovery.

I hope that Little Z feels better very soon, please wish her the best from me :hugfriend :hugfriend

Sharmin
Title: Re: Wish us luck !!
Post by: Manal on February 24, 2009, 12:11:09 AM: Wishing little Z a speedy recovery :hugfriend :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on February 24, 2009, 02:48:31 AM: 104 degree fever again :wah

Please pray :( .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 24, 2009, 03:39:43 AM: Zaini, Does she have a cold or other infection as well?
Title: Re: Wish us luck !!
Post by: Dori on February 24, 2009, 08:54:17 AM: Aaah, I hope she feels better soon!! :getwell

Does someone know how much that is in Celcius?

Dore
Title: Re: Wish us luck !!
Post by: Zaini on February 24, 2009, 09:09:08 AM: Sharmin,

She has chest and nasal congestion,GP gave antibiotic "Cefixime".

Dore ,

Its 40 degree Celsius.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on February 24, 2009, 09:39:25 AM: Aaah, that is a high temperature. I hope the Cefixime can get it down!!!

Take care, :hugfriend
Title: Re: Wish us luck !!
Post by: Manal on February 24, 2009, 11:33:26 AM: Zaini, this time of the year children are always prone to these congestion.

Don't forget the water bath. The doctor once told me that all the drugs that lower the fever don't work except when the body temp is around 38.5 celcius. So what you have to do is o lower the body temp to 38.5 by water bath so that the drug can start working effectivly.

Also don't forget to give her a lot of water and juice,food is not important in fever . As they say ''starve the fever and feed the cold''

please update us

manal
Title: Re: Wish us luck !!
Post by: nice friend on February 24, 2009, 11:51:22 AM: :getwell :getwell :getwell :getwell :getwell
:getwell GET WELL SOON LITTLE Z :getwell
:getwell :getwell :getwell :getwell :getwell

Umair
Title: Re: Wish us luck !!
Post by: maha on February 24, 2009, 12:05:22 PM: Hi Zaini
I hope Little Z gets better soon. Hassan too had fever 40.6c last week, but he is ok since yesterday. Is there any connection between Asunra and immunity ??? I started Asunra in october and Hassan caught his first cold in the same month. He had his first cough in nov, his first chest infection also in nov...followed by a series of throat congestion and throat infection every two to three weeks. He is due for his tx on thursday and this time too his ferritin might not be exactly accurate becoz of infection. I am so frustrated :wah
loads of health to zainab
maha
Title: Re: Wish us luck !!
Post by: Zaini on February 24, 2009, 12:40:46 PM: Thanks Manal and Umair,

I am trying to keep her hydrated,she did take a water bath yesterday,but not today,she is taking a nap right now,i'll check her temperature again when she wakes up.I hope it will be gone as she has started antibiotic.

Maha,

I also desperately want to know if there is a connection between Asunra and this,fever and then antibiotics do effect hb in negative way,and she has chest congestion,when my son gets sick i can realte it to his congestion or anything else,but when Zainab gets sick,i just feel blind,that i don't know whats going on in her body :( Paranoid mom.

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 24, 2009, 01:30:57 PM: Still 102.4 degree fever,I called her hemo and she said it could be a viral,and if it persists we should check her for malarial parasite,but her fever does not have the pattern of malaria,so i don't think its a possibility.
I have not stopped Asunra.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 24, 2009, 01:55:20 PM: Zaini,

I hope that she feels better soon. I am sure that her fever is due to the virus that is causing her chest congestion. I hope the poor dear feels better very soon. I am praying for her to recover quickly.

Much love,
Sharmin
Title: Re: Wish us luck !!
Post by: Sharmin on February 24, 2009, 03:21:33 PM: Little A also woke up sick - sore throat, cough, stuffy nose and the works. I hope that this cold does not bring down his hg like the last one did. His hg is being tested tomorrow, so far he was looking good....

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 24, 2009, 03:47:12 PM: Is it a world wide viral or what :mad Little Z is a very tolerant girl usually,but today she is getting really cranky,and she is crying that she doesn't want to miss school anymore :( .Infection does bring hb down :( .

Zaini.
Title: Re: Wish us luck !!
Post by: bhatti on February 24, 2009, 07:14:05 PM: Asslam-o-Alaikum Zaini sister. Hoping that litle Z will be better now. Thallasaemia is enough for these little angels. May Almighty Allah save them from other problems.

Bhatti
Title: Re: Wish us luck !!
Post by: Sharmin on February 24, 2009, 09:49:54 PM: I hope that little Z is doing better now. How is her fever?

Little A went to school this morning, I pray that his hg does not drop. The antibody seems to become more active when he is sick.

Sharmin
Title: Re: Wish us luck !!
Post by: Sharmin on February 25, 2009, 02:52:54 AM: I hope that her fever is down now Zaini,
Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 25, 2009, 02:54:16 AM: Thanks Bhatti bro,

Sharmin,

She still has fever,its 101.9 degree,its second day she has to miss school and she is hating it.

When we went for transfusion last Saturday,Doctor was giving us next transfusion appointment for three weeks,i insisted on 4 weeks,but after this continuous fever i think we'll have to go at three weeks :( .

I hope Little A is feeling better now as he went to school,give him a hug from Auntie Zaini,and pray for Little Z.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 25, 2009, 03:01:55 AM: Zaini,

I hope that she fights this very soon. I also hope that it does not affect her hg. I hope that she will be able to go to school tomorrow. After this, I hope that she is done with having colds for the rest of the year.

I am praying for our little Z to get better very soon,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 25, 2009, 11:51:02 AM: Thanks Sharmin :hugfriend

By the grace of Allah,her fever is gone now,its such a relief,although she is looking a bit weak but i am sure she'll recover once she starts eating properly,right now she isn't eating much because of sore taste of fever in her mouth.

Thanks for the continuous support all of you :grouphug

Zaini.

P.S how is Little A's throat now ?
Title: Re: Wish us luck !!
Post by: Sharmin on February 25, 2009, 03:04:30 PM: Zaini,

I am glad that Little Z has gotten over her fever. I think that she will recover quickly now. I hope that she starts to eat well soon.

Little A isn't doing too well today. A lot of cough, chest congestion and stuffy nose. He wants to go to school, but I am not sure if it is a good idea. His dad has taken him to the hospital for his blood test and crossmatch. I hope that his hg is decent. Today is 3 weeks since his last, enourmous transfusion.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 25, 2009, 05:16:49 PM: Sharmin,

His hb is fine on three weeks,i hope he will fight off this cold,Little Z still has cough and chest congestion,i hope it will be gone in a couple of days.

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on February 25, 2009, 11:16:31 PM: Wish both our little angels a speedy recovery :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Sharmin on February 25, 2009, 11:50:43 PM: Thanks Manal and Zaini :hugfriend

I hope that Little Z is better today. It must have been tough on her to have a fever for two days.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 26, 2009, 03:26:44 AM: Thanks Manal and Sharmin,

She is off to school now,she has cough and chest congestion,but she wasn't ready to miss school for one more day :rolleyes so i had to let her go.

Hope Little A feels fine.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on February 26, 2009, 06:48:32 AM: I hope all three litthe sweeties feel well again. :hugfriend
Title: Re: Wish us luck !!
Post by: Sharmin on February 27, 2009, 03:03:00 AM: Thank you Dore :hugfriend

I am hoping that little Z is all better today.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 27, 2009, 03:12:14 AM: Sharmin, :hugfriend

She is ok as she has no fever,but cough and congestion is still there,she is completing her antibiotic,and i am giving her turmeric,honey and nigella,so i hope it will help her.

Do you know the normal ranges of Urine Creatinine and Urine Protien,its strange that they are not written in her reports.

As for low phosphorus,her hemo asked me to double her milk intake.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 27, 2009, 07:14:21 AM: Zaini,

I will check on Little A's reports tomorrow what the normal ranges are listed as. I hope that little z is getting better.

Little A is still congested but he did go to school today because he has missed so much school lately. Transfusion is tomorrow, but lately I have been able to take my laptop with me.

Sharmin
Title: Re: Wish us luck !!
Post by: Sharmin on February 28, 2009, 09:30:18 PM: Zaini,

How is little Z? I hope that she is over her cold now.

Little A has a harsh sounding cough and a very stuffy nose - but he feels well and is playing.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 28, 2009, 09:35:38 PM: Sharmin ,

She is ok,cough is still there,its been only one week she was transfused,but is already looking a bit pale :( i'll get her hb checked tomorrow,she is getting a bit cranky too,i don't know if its cold or her hb has gone very low,i hope its not.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on February 28, 2009, 09:59:37 PM: Zaini,

It is a good idea to check her hg - but please know that when they are feeling unwell they look pale even if the hg is not low. Sometimes when little A is sick he looks pale but his hg is good - and a week later when he feels better his color returns to pink on its own.

Hoping that the little ones get over these colds soon,

Sharmin
Title: Normal Ranges
Post by: Sharmin on March 11, 2009, 02:46:19 PM: Zaini,

I am listing all of the tests are routinely done for little A since he has been on exjade and the normal reference ranges (in Canada) for each.

glucose random 3.6 - 11.1 mmol/L
sodium 133 - 145
potassium 3.3 - 5.1
chloride 98 - 111
CO2 content 21 - 31
ALT 1 - 35 U/L
bilirubin, total 0 - 19 umol/L
bilirubin direct 0 - 7 umol/L
creatinine 30 - 70 umol/L
urea 2.0 - 7.0 mmol/L
ferritin 10 - 110 ug/L
GGT 11 - 63 U/L
Lactate dehydrogenase 125 - 300 U/L

Urine Chemisty reference ranges were not provided, but the tests are as follows and I am posting little A's results from January 7/09

Creatinine, urine 2.50 mmol/L
Protein, urine 0.05 mmol/L
protein/creat ratio, urine 0.020 g/mmol

Little A's ALT level has remained around 25 since we began exjade - however in his last blood test it was 53 - Andy had told us that this is too small of an elevation to have any concern over - our doctor here and the docs in Oakland confirmed this. I think that little Z's ALT was an even smaller number so you should not be concerned at all right now.

I hope this helps,

Best of luck for little Z on her next blood test,

Sharmin
Title: Re: Wish us luck !!
Post by: nice friend on March 11, 2009, 03:26:42 PM: :getwell Little-Z ,

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Zaini on March 11, 2009, 03:44:23 PM: Thanks a lot Sharmin :hugfriend That definitely helped.

I have never checked Little Z's glucose levels,should i get them checked?

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on March 11, 2009, 04:07:17 PM: Hi Zaini,

I guess glucose levels should be intermittently checked in all thals - I don't think that children whose ferritins are below 2000 are really at risk of having iron in their pancreas - but they do suggest having glucose checked intermittently in Oakland.

Sharmin
Title: Re: Wish us luck !!
Post by: Manal on March 11, 2009, 11:48:11 PM: Yes Zaini, the endocrinologist require this test for Ahmad twice a year. Though it is more related to increased iron overload, all thal should check it

manal
Title: Re: Wish us luck !!
Post by: Zaini on March 12, 2009, 01:51:40 AM: Thanks Sharmin and Manal,

I'll get the test done,by glucose levels you mean fasting blood sugar? Or GCT?Which test exactly should i ask for?

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on March 12, 2009, 04:50:24 PM: Zaini ,
i hope and wish that Little-Z's results will come Normal , ...

Lots of good wishes and prayers
Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Zaini on March 12, 2009, 05:00:45 PM: Thanks Umair :hugfriend

I've got her Vitamin D levels checked,will have to wait till 18th,lets hope they come back normal,along with SGPT and Serum Creatinine.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on March 12, 2009, 05:07:37 PM: Hi Sis,
INSHA-ALLAH (if God will's it) ... hope and believe good for the results :thumbsup ...

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on March 12, 2009, 05:14:43 PM: Zaini,

I hope that all of the tests come back completely normal.

Best,

Sharmin
Title: Re: Wish us luck !!
Post by: Manal on March 12, 2009, 07:00:43 PM: Zaini

The test is fasting blood sugar (she should not eat anything but water at least 8 hours before the test)

Wish you all the luck in her results

manal
Title: Re: Wish us luck !!
Post by: Zaini on March 14, 2009, 08:15:15 AM: Hi Every one,

Little Z's tests came back,after two months of Asunra her SGPT is 59,a month back it was 45 :( which means its still elevating,serum creatinine is same as last month 0.6,well with in range Alhumdulillah,and ferritin is 1592,last month it was 1441,which means it is also rising.
She was taking 500 mg of Asunra,and her weight is 27 kg,i know its a very low dose,but if SGPT is increasing on that low dose where would it be on maximum dose :( .

I was hoping to switch her to 600 mg,is it ok to increase the dose? i tried reaching her hemo but she wasn't available ,i am also awaiting her Vitamin D results.

Thanks every one.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on March 14, 2009, 01:59:45 PM: Hi Sis,
i m not an experty , soo no sugestion at he moment , all that i wana say is BEST OF LUCK to Littl-Z and May God bless her with the best of health and everything ... :goodluck

Lots of good wishes
Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Zaini on March 14, 2009, 06:07:37 PM: Thanks Umair,

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on March 14, 2009, 08:13:59 PM: :grin Ur WelCome Sis, .... dont mind the grin Emoticon bcoze its how i react if anybudy say thanx or encourage's me for something good , i always like to reply like this :grin ( with big griny smile ) ...

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on March 14, 2009, 10:24:18 PM: Zaini,

I asked Oakland about SGPT/ALT - they told me that these levels (little A was 53 last time) are not cause for concern because they are marginally increased. They said that the levels would have to be much much higher before they would get concerned. I think that little Z's levels are fine. You should be fine increasing her dose to 600.

I think that once she starts receiving the full dose of asunra her ferritin levels will come down nicely too. I am glad that she did not spike after starting asunra. Little A takes 625mg of exjade - he also weighs 27kg even though he is 10 years old, he's a skinny little squirt :biggrin

I think that things are actually looking good for little Z right now. If you have any concerns I can consult with Oakland.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on March 15, 2009, 10:54:14 AM: Thanks a lot Sharmin :hugfriend

I understand Little A is not on maximum dose of 30 mg/kg,why is that so? Because he is on desferal too?

Little Z started her dose of 600 mg today.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on March 15, 2009, 04:34:59 PM: Hi Zaini,

Yes, I think that is why he is on a smaller dose - because he gets desferal 5 X a week. I wonder if they will increase his exjade dose once they reduce his desferal.

Little Z, best of luck with the higher dose sweetheart! :hugfriend

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on March 15, 2009, 05:15:14 PM: Thanks Sharmin,

I so wish i can use desferal with Asunra,but i know doctors here won't allow us to,i wonder when the time will come we'll see her ferritin below 1000. :dunno

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on March 15, 2009, 06:56:05 PM: Quote
i wonder when the time will come we'll see her ferritin below 1000
Very Soon Sis , INSHA-ALLAH .

Best REgards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on March 15, 2009, 07:11:47 PM: Zaini,

I hope that her ferritin is below 1000 very soon, my prayers are always with her.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on March 16, 2009, 01:53:41 AM: Thanks Umair and Sharmin :hugfriend

Is it advisable to do this combination therapy with out doctor's supervision? i know its foolish of me to even ask,but God knows how desperate i am to lower her ferritin.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on March 16, 2009, 02:36:30 AM: Dear Zaini,

Little A is getting a lot of desferal because his transfusion requirement is still quite high. Usually patients who go on combination dfo/exjade treatment have desferal only 2 or 3 times a week. Little A is being monitored by the Oakland and for that reason I am more comfortable with him doing this treatment. I understand that many other patients are also using this combination - but I wonder if they are being as closely monitored as little A. Currently, we are going back to Oakland every 6 months - and having numerous tests every 3 weeks.

So far, no adverse effects have been seen in any of the patient using that combination therapy. If I can send you all of the tests that little A is having done and your doctor can do them every three weeks - perhaps little Z can try the combination treatment with desferal 3 times a week. Maybe your doctor can phone and discuss the possibility with doctors in Oakland. The study we are in will be wrapped up in a year or so and then they will be published. Little Z is in good health and as far as I know she should do well on combination, but I don't know how to advise you at this time.

Remember that little Z's ferritin levels are in a safe range - and soon they will get even lower as her exjade dose increases.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on March 16, 2009, 02:57:01 AM: Thanks Sharmin,

The thing is,i don't know if i'd be able to convince her hemo,when I got a prescription from her for Asunra,she said right away,no desferal and no defriprone,and this is what Novartis is telling everyone right now,so they don't dare go against it.
Although i am thinking of consulting another hemo,Dr Tahir Shamsi,lets see what his opinion is,i once went to him and i found him a lil different,i'll see what he has to say about it,i'll get print outs from the forum for him to see.

Thanks again, :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on March 17, 2009, 03:04:22 AM: Hi Zaini,

Have you received the rest of little Z's test results yet? Who's the cutie little baby? She is sooooo precious!!

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on March 17, 2009, 03:07:55 AM: Hi Sharmin,

I am waiting for her Vitamin D results...

This is my sweet little neice :biggrin :biggrin :biggrin Duaghter of Pareeshay,she is soooo cute.

Zaini.
Title: Re: Wish us luck !!
Post by: Pareeshay on March 17, 2009, 03:17:42 PM: hi sis!
:goodluck wid lil Z's vit D test result..
Title: Re: Wish us luck !!
Post by: Zaini on March 22, 2009, 09:57:32 AM: Thanks a lot sis :hugfriend

Hi everyone,

Sorry for late update but i am a bit struggling now a days with myself,getting out of bed is even a struggle. :rotfl
Little Z went for transfusion on friday,her hb 4 weeks post transfusion was 9.8,which isn't bad i guess,what with she had fever and cough after last transfusion,About SGPT doctor said this reading is not concerning,Little Z is now on 600 mg Asunra.For Vitamin D her hemo also suggested shots.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on March 22, 2009, 10:43:21 AM: Zaini Sis,
yeah , its good Hb , .. good luck Little-Z for With D shots and Asunra ( and all the treatments ) ... :thmbsup .. for

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Andy Battaglia on March 22, 2009, 03:36:06 PM: Zaini,

I think you should also have your vitamin D level checked.
Title: Re: Wish us luck !!
Post by: Sharmin on March 22, 2009, 05:47:56 PM: Zaini,

Having a hg of 9.8 after four weeks is ideal. Do you know how much blood she received during her previous transfusion?

I agree with Andy, I think that you should have your vitamin D checked.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on March 22, 2009, 06:42:28 PM: Thanks Andy,

My cousin also suggested that i should get my Vitamin D levels checked,whats alarming me is that now a days when a wake up after sleep,my face has so much swelling that it really looks odd,puffy eyes and everything.

Sharmin,

Little Z is receiving 450 ml blood on every transfusion,which makes it around 16 ml per kg.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on March 22, 2009, 06:55:25 PM: According to Oakland that is perfect - to have a hg of 9.0 - 10.0 (approx 9.5) four weeks post tx - with the volume little Z is receiving. Furthermore, with her being sick it is great that she was able to maintain her hg - god bless :)

I had severe vitamin D deficiency last year - I was on 3000IU vitamin D for a few months. Now I am on 1000IU maintenance dose of vitamin D.
Sharmin
Title: Re: Wish us luck !!
Post by: maha on March 22, 2009, 07:04:14 PM: Hi Zaini
You should get your hb checked and also your thyroid function as a swelling or oedema is a symptom of hypothyroidism. I remember you had your thyroid checked sometime a year or so back and it was in the borderline. I really think you should repeat the test. Goodluck with your health. Hassan`s fighting with his sis, got to run

Maha
Title: Re: Wish us luck !!
Post by: Zaini on March 22, 2009, 07:33:32 PM: Thanks Maha,

I will get these levels checked ASAP.

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on March 22, 2009, 09:48:11 PM: Zaini,

Why don't you postpone little Z transfusion for another week ( Tx every 5 weeks) as long as the Hb is 9.8??? Why don't you wait until it is 9 ???
Was this normal for her before starting carao???

As for the puffy face, sometimes this happen to me when i sleep for 8 hours or more after a long period od sleeping 4 or 5 hours only

manal
Title: Re: Wish us luck !!
Post by: Zaini on March 23, 2009, 06:43:27 AM: Andy and Sharmin,

Quote
Why don't you postpone little Z transfusion for another week ( Tx every 5 weeks) as long as the Hb is 9.8??? Why don't you wait until it is 9

Should i be doing that? What do you think?

Quote
Was this normal for her before starting carao???

Manal,

Before starting carao she was going on three weeks,and her hb used to hover between 9 and 9.5.
The puffiness is here when ever i wake up,be it one hour or more.

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on March 23, 2009, 01:29:26 PM: Quote
Before starting carao she was going on three weeks,and her hb used to hover between 9 and 9.5.

I think this is a good observation that should be monitered cause i observe that after carao the rate of hemolysis durig fever or illness is not the same but i am still monitering.

Regarding my opinion, i think that a hb of 9.8 is more or less a 10 so why not to wait for a week so that you reduce the iron taken from transfusion and at the same time she will be still in the rate of 9.2 to 9.5 which will not affect growth or activity

manal
Title: Re: Wish us luck !!
Post by: Zaini on March 23, 2009, 06:42:42 PM: Quote
i observe that after carao the rate of hemolysis durig fever or illness is not the same but i am still monitering.

I also think so.

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on April 14, 2009, 10:38:13 AM: Hi Everyone,

Little Z finished a month on 600 mg of Asunra,i got her creatinine and SGPT checked so that we can move on to 700 mg,and her SGPT is 94,last month it was 59 :( is that anything to be concerned about.i'll contact her hemo but i wanted your opinion too,is it ok to increase the dose? She hasn't reached her maximum dose yet,which would be 800 mg.

Waiting for your replies,

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on April 14, 2009, 10:56:21 AM: Dear Zaini

As you know i am not well expierenced in chelation, but from my readings i can say that this is nothing to worry about because it is accompanied by the usage of the chelator and the increase is still acceptable.

Though liver functions are a good reference but when elevated this does not mean the organ (liver ) will be affected or is damaged cause there are many disease where the functions are normal and the tissues of the liver is not normal for example this usually happens with Bilharzia (spelling..) patients.

I am sure Andy or Sharmin will give you a more accurate answer

manal
Title: Re: Wish us luck !!
Post by: Zaini on April 14, 2009, 01:44:37 PM: Hi,

Thanks Manal for your guidance :hugfriend .

I called hemo and she said that we should stick to 600 mg for now,for atleast a month and then check her ferritin and SGPT and then decide :( she said if SGPT elevates further we may have to quit taking Asunra :whyme i really don't want to.

Andy,Sharmin,

What do you say? Should i increase the dose or stick to 600 mg for on more month,my understanding was that once Little Z will reach her max dose SGPT may go back to normal :( please tell me what should i do?

We need prayers,Little Z won't like going back to Desferal .

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on April 14, 2009, 02:30:17 PM: Zaini,

I think you should continue on the current dose until her next test and see which direction the readings go. Is she taking nigella?
Title: Re: Wish us luck !!
Post by: Zaini on April 14, 2009, 03:06:57 PM: Thanks Andy,

Yes she is taking Nigella daily and i was kind of hoping that it would bring her SGPT down :dunno .Her serum creatinine is 0.7 which is well with in range Alhumdulillah.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on April 14, 2009, 07:37:55 PM: Hi Zaini,

Lil A's SGPT levels were elevated too during his last two blood tests - his hematologist - and the docs in Oakland were not concerned at that time. I will email them and ask them what levels they actually become concerned at, and I will get back to you soon. Personally, I agree with Andy - I think that you should continue at the exjade level that you are on currently for a little while.

I don't think that you should be too concerned at this time, how are lil Z's ferritin levels?

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on April 15, 2009, 05:46:38 AM: Sharmin,

Right now we are continuing with the same dose as her hemo and Andy suggested,i didn't check her ferritin this month,because i know that she is not on her max dose so it must be increasing,her doctor also said to give it some time before checking it again,so after completing another month of 600 mg Asunra,i'll get it checked.

Zaini.
Title: Re: Wish us luck !!
Post by: Pareeshay on April 15, 2009, 06:20:33 AM: Hello Lil Z!

(http://tbn2.google.com/images?q=tbn:QlqytQW1STW9bM:http://i317.photobucket.com/albums/mm379/tagx/cat/christian/praying-lion.gif)

Best wishes n prayers,
Aunt Pareeshay and lil W.
Title: Re: Wish us luck !!
Post by: Zaini on April 15, 2009, 08:31:22 AM: Thanks a lot sis,:)

You know very well how it was a relief switching from Desferal to Asunra,and you know Z won't like to go back on that.

Zaini.
Title: Re: Wish us luck !!
Post by: maha on April 15, 2009, 08:41:02 AM: Hi Zaini
I hope everything resolves in this month and our Lil Z can stick to Asunra. Do you know why this drug elevates ALT levels?

take care
maha
Title: Re: Wish us luck !!
Post by: nice friend on April 15, 2009, 08:45:12 AM: Ops..... i m Late na ???.... :grin its my PC's fault :grin ...
Hi Zaini sis ,
(http://images.faithclipart.com/images/3/1208370294341_294/img_large_watermarked.jpg)
:goodluck.

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Zaini on April 18, 2009, 07:53:57 PM: Thanks Maha and Umair, :hugfriend

Guys,

After the last SGPT test i was a bit tensed,i msgd Andy and he told me that the best time to test SGPT is when child has rested properly as with high activity SGPT levels raise higher,i told him that we did this test in afternoon at 4 PM and before that Little Z was playing with her brother,he told me it wasn't a good time.So i decided to repeat it on transfusion day as we leave at 7 in the morning and Little Z wakes a few minutes before,so that we can see the difference,and guess what ? Her SGPT came back 59 :biggrin instead of 94,its a huge difference,and i never would have known any such thing if it wasn't for Andy.

Thanks a lot Andy,foe being our guiding light,i can't thank you enough.Now i'll ask her hemo if she thinks its appropriate to increase the dose,even if she says no,i am happy with lower SGPT levels :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on April 18, 2009, 07:55:33 PM: Zaini,

I am so glad to hear this! I think Andy can really create superthals!!

Sharmin
Title: Re: Wish us luck !!
Post by: Manal on April 18, 2009, 11:58:17 PM: Congratulations Zaini and many thanks Andy :hugfriend :hugfriend

How can labs ignore such an important criteria???????????????????

manal
Title: Re: Wish us luck !!
Post by: Andy Battaglia on April 19, 2009, 12:02:31 AM: I read about when to do the liver tests on several patient forums but not on any medical site. Once again, the people dealing with it know more than the trained pros.
Title: Re: Wish us luck !!
Post by: maha on April 19, 2009, 04:10:14 AM: Hi Zaini
This is indeed great news. And I am sure the next time someone complains about a rise in SGPT the first to read the post would definitely ask---- What was your activity level just before the test? Thankyou for a great piece of info Andy.

maha
Title: Re: Wish us luck !!
Post by: Zaini on April 19, 2009, 09:13:02 AM: Thanks evereyone, :hugfriend

I really don't know where would i be if it wasn't for this forum :lovethissite .

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on April 21, 2009, 11:25:41 AM: Hi Guys,

We went to see Lil Z's hemo today,and she gave us a green signal for increasing the dose of Asunra :biggrin so now we'll start 700 mg.She said if you can manage her ferritin below 1500,that would be ok,but for me below 500 would be great :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Pareeshay on April 21, 2009, 12:07:55 PM: Wow sis!
Glad to hear ur gud news!

(http://tbn1.google.com/images?q=tbn:GKCpxcbJ8siEZM:http://i266.photobucket.com/albums/ii261/funkbutter/graphics/Good_Luck/9_good_luck_balloon.jpg)

best wishes and prayers..
Pareeshay:D
Title: Re: Wish us luck !!
Post by: Zaini on April 21, 2009, 12:11:23 PM: Thanks Sis :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on April 21, 2009, 04:08:00 PM: Good luck Zaini, with the new dose, keep updating

manal
Title: Re: Wish us luck !!
Post by: Sharmin on April 21, 2009, 04:37:48 PM: Zaini,

all the best with this new dose - I hope that lil Z's ferritin levels decrease quickly:)

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on April 21, 2009, 05:23:45 PM: Thanks Manal and Sharmin :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on April 21, 2009, 05:44:04 PM: Pareeshay,
Quote
If you light a lamp for somebody,it will also lighten your path.

I see you doing this sweetie :hugfriend We are so lucky to have you here :)

Sharmin
Title: Re: Wish us luck !!
Post by: nice friend on April 22, 2009, 11:53:52 AM: GOOD LUCK Sis, and Lil Z ... :goodluck

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Pareeshay on April 23, 2009, 01:35:39 PM: Sharmin didi

so sweet of u to say dese appreciating words..m touched! :heartpink

Quote from: Sharmin on April 21, 2009, 05:44:04 PM
We are so lucky to have you here :smiley

infact im so lucky to hav u guys as frndz.

Between,I cant do much for lil z and other thal patients..joining dis site is the only way for me to support all of them.i wish i could do more,lyk our admin Andy. :lovethissite
now i better get down from cloud nine on which ur words hav sent me :rotfl

xxx
Pareeshay :biggrin
Title: Re: Wish us luck !!
Post by: Zaini on May 16, 2009, 01:26:52 AM: Hi Guys,

Just a quick update,

Lil Z is going for transfusion today,her hb after four weeks is 10 which is good Alhumdulillah,but her ferritin is almost the same,last time it was 1592 and this time its 1527.We'll be checking her SGPT in couple of hours.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on May 16, 2009, 03:37:30 AM: Hi Zaini,
its good to hear that her Hg is in fine range .

@ Lil-Z
Best of Luck Liltle-Z for all the stuff you're going for today :goodluck.....

Lots of Best wishes
& Best Regards
Umair Bhayya :) :grin
Title: Re: Wish us luck !!
Post by: Sharmin on May 16, 2009, 04:02:22 AM: Hi Zaini,

I am glad to hear that lil Z's hg is good. I think that you will see a decline in her ferritin soon, it does take a while with exjade but it happens. I just think that it is a good sign that you did not see a sharp increase. I have a feeling that her iron levels are actually lower than her ferritin level.

Please let us know if her SGPT level has come down. Always wishing the best for the all of our little ones.

Best of luck,

Sharmin
Title: Re: Wish us luck !!
Post by: T @ r ! Q on May 16, 2009, 05:10:19 AM: pretty good Hg lil Z, congrats. And good luck for Tx
Title: Re: Wish us luck !!
Post by: Zaini on May 16, 2009, 08:41:23 AM: Thanks Umair,Sharmin and Tariq,

Her SGPT this morning was 55,last month it was 59,so there is a slight decrease,but i think its a good sign.

I think i should continue with the same dose of Asunra for one more month,she is on 700 mg and her weight hovers in between 27-28 kg.what do you guys suggest?

One more thing,since last 3-4 months Lil Z's pre transfusion hb has been 9.8,so when i last went to her hemo,she said "why don't you try 5 weeks? "I am not sure about that,again what do you guys think?

Love always :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: T @ r ! Q on May 16, 2009, 09:10:22 AM: You shouldn't be concerned as far as ferritin is not rising i think. Let the SGPT drop a bit more before increasing the dose.

Go for 5 weeks if Hg remains above 9.5 after 5 weeks. Which i think is possible since z is intermedia and Hg doesn't drop that much in a week in them. Or you can set it as alternate, 1 Tx at 4 week and other at 5 week.

My 2 cents :)
Title: Re: Wish us luck !!
Post by: Manal on May 16, 2009, 09:13:12 AM: Hello Zaini

Definetly if i were you i would give it a try and transfuse every 5 weeks. You will have nothing to lose and if it didn't work you can go back every 4. But what you will gain is increasing the transfusion gap with all its benefits

Also i think that everything looks normal alhamdoullah, why not increase the dose Asunra and start the right chelation dose,you having nothing that stops you

Zaini, have you ever thought of trying hydroxurea since little Z has an intermedia mutation??

manal
Title: Re: Wish us luck !!
Post by: nice friend on May 16, 2009, 10:10:32 AM: Hi Zaini,
not know much about it, but Tariq and Manal are right i think ... i think, let SGPT decrease a little more , bcoze with this dose if SGPT isn't decreasing that is also not increasing and it could be in increasing trend after increasing Exjade dose ... soo thats why i think let it decrease a litlle more. ..
Hg : i think it will be good to try wat Tariq has sugested alternate gap ..

Best Regards for Lil-Z
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Dori on May 16, 2009, 12:37:13 PM: I think you should give it a try for a few months and than review it with the doc. Ofcourse only as Little Miss Z feels good by it.

I talked with my doc about my fe and he said this is how it works. First the patient is happy, than the patients thinks camiolle (kamille) tea should help me more [relax] and it start working and the patients fainted and believes in it again. It can take more than a year to reach this point. That was the peptalk!!
Xx Dore
Title: Re: Wish us luck !!
Post by: Sharmin on May 16, 2009, 03:33:06 PM: Zaini,

I am glad that her SGPT value is coming down! As for trying to go a fifth week between transfusions - Oakland said to us that it is best to transfuse at a pretransfusion hg of 95 to 100. Perhaps you can try for 4 1/2 weeks?? Over time she will get less blood without letting her go too low. I don't think it is good to let them go down to 90 between txs.
What does everyone else think?

Wishing lil z all the best always :hugfriend :hugfriend :hugfriend

love,
Sharmin
Title: Re: Wish us luck !!
Post by: Sharmin on May 16, 2009, 03:35:11 PM: Zaini,

Another thing that can be tried is a slightly smaller volume of transfusion. This time lil A's hg was high so his doctor transfused 413ml of blood rather than the usual 550ml. We will see how thing are in a few weeks.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on May 16, 2009, 06:40:36 PM: Thanks everyone for your thoughts,they are really valuable for me :hugfriend.

Well my mind is a jumble of thoughts right now,what i can do and what i should be doing,i think i will try once for five weeks and see if her hb remains above 9.5,i don't wanna go lower than that,as far as the dose of Asunra is concerned,this very minor decrease in numbers made me think that may be because Lil Z was on good chelation regimen before starting Asunra,700 mg might work for her,its not necessary,but i'll just wait for a month and if ferritin increases again i'll ask her hemo to increase the dose,its really a struggle with her,she is never quite ready to increase the dose.

Manal,

Yes i have given a thought to hydrea many times,even once dr Tahir Shamsi asked me to start it,but let me tell you, our little prince Ahmad is really lucky Manal :hugfriend ,coz i have seen patients who are on hydrea,and each one of them had bone deformations,i know its not necessary that it would happen with everyone,but i am just scared to try it,as we all know bone deformity is not reversible.

Thanks for your input guys,i'll try four and a half or five weeks this time,to see if she can maintains the hb above 9.5.

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on May 16, 2009, 06:53:57 PM: Zaini,

I agree with you about the Asunra dose. It is best to wait and see how well she does on this dose. If her ferritin does not rise, this may be sufficient, especially in light of the fact that her chelation is being supplemented with IP6. Does she also drink tea?
Title: Re: Wish us luck !!
Post by: Zaini on May 16, 2009, 07:34:26 PM: Thanks Andy,

She is taking IP6,but she does not drink tea on regular basis,i am trying to make it a habit,but its taking time,what with scorching weather here,she'd take a cold juice anytime,but tea! its hard.Still i'll keep trying.

Andy,

What are your thoughts about her transfusion interval.

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on May 16, 2009, 07:39:12 PM: Will she drink ice tea?

As far as transfusion interval, take the extra week and see how she does. It may be pushing things but you won't know until you try and it won't do any harm if her Hb does drop during the week.
Title: Re: Wish us luck !!
Post by: nice friend on May 16, 2009, 07:44:29 PM: Zaini ,
if Lil-Z is resisting to drink tea bcoze of warm wwaether but she can drink cold drink or juice na , then Why dont you Try Ice tea , that is available in many different flavours like peach and alot other .. i would to sugest her to taste ice tea ...

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on May 16, 2009, 07:53:45 PM: Zaini,

Perhaps you can try tea with honey in it - lil A drinks green tea with honey in it and he loves the taste.

Good luck,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on May 16, 2009, 07:56:36 PM: Thanks everyone, :hugfriend

I'll try green tea with honey,Thats a good idea,thanks Sharmin,and if still she doesn't like it,i'll check Ice tea too.:)

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on May 16, 2009, 10:35:38 PM: Zaini,

1- What i mean is that you use the hydroxurea with transfusion, you don't have to stop transfusion. In the last conference of Syria, there was a good lecture by Iranian hematologest who found that the usage of hydroxurea has eliminated the need for transfusion in up to 50% in the major patients enrolled in the study.

It was a big debate during the lecture because some doctors from Greece suggested trying the hydrea as a protocol for transfusing patients too. Though doctor Cappilini, announced that she was so sure of the numbers of the Iranian studies but she commented that is somehow related more to the nature of mutation of the Iranian population and that what goes for them (elimination of transfusion in majors) is not the norm for all othe rmutations.

But in some studies too it showed that sometimes the usage of hydrea with transfusions can increase the gap between transfusions. What is encourging is that if it doesn not work,you can stop it at any time.

2- If you are going to use canned ice tea, take care because almost all brands have vitamin C

3- If you are going to make hot tea at home then cool it in the fridge, don't add the honey in any hot solution. Honey should always be used in room temperature and if it is heated, some componenets of the honey change and over the very long use, it creates toxins in the liver

manal
Title: Re: Wish us luck !!
Post by: nice friend on May 16, 2009, 11:03:59 PM: Hi Zaini & Manal ,
Ice Tea i m talking about is available in powder like form (in sachet ) and you always have to prepare that at home , .. i will let you know complete recipe of that really soon ( ASAP)

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: maha on May 17, 2009, 12:38:07 PM: Hi
Its getting really warm here too. And I make iced tea at home. Boil 4 glasses of water, add a tea bag a piece of grated ginger, few sprigs of mint and sugar and lemon to taste and cool it . My family loves it including Hassan :wah. I am hesitant to give it to him because of the lemon and we usually have it in hiding. Is it ok to give it in between meals?

thankyou
maha
Title: Re: Wish us luck !!
Post by: Manal on May 17, 2009, 03:47:10 PM: Maha, when vitamin C is heated, it is broken and is no more useful, i.e does not do its function.

Even i have read once that if you have a fresh orange juice and you just shake the bottle very hard, it is broken too cause it is a weak vitamin in composition

http://www.thalassemiapatientsandfriends.com/index.php?topic=1706.0;highlight=citric+acid

manal
Title: Re: Wish us luck !!
Post by: Sharmin on May 17, 2009, 03:58:42 PM: Hi Maha,

I agree with Manal. Also, citrus should not be avoided because it has many helpful properties. Especially if it is between meals. The tea sounds delicious by the way!

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on May 17, 2009, 05:55:13 PM: Manal,

I have never heard about hydrea and transfusion going together,i'll definitely ask her hemo about that,the doctor who asked me to start hydrea ,said that we'll have to stop transfusions and let he hb drop to 8 and then hydrea would be started.

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on May 18, 2009, 02:37:44 AM: It is better to take tea with meals as it helps to inhibit iron absorption, while lemon is best taken between meals so that it doesn't add to iron absorption. Ice tea without lemon could be taken at meals and with lemon between meals. Thals do need vitamin C but can only take low doses so it's best to get it from foods like citrus, used in moderation.
Title: Re: Wish us luck !!
Post by: Sharmin on May 18, 2009, 04:44:26 AM: Zaini,

I am not sure but I was told by the thalassemia center (Sick Kids) in Toronto that transfusions are completely stopped and hemoglobin is allowed to drop significantly before hydrea is started. I believe that they also said that transfusions are not given with hydrea because transfusions suppress the marrow.

I could be wrong. Andy, do you know more about this?

Sharmin
Title: Re: Wish us luck !!
Post by: cherieann on May 18, 2009, 07:37:49 AM: Good Luck :hugfriend I will pray :candle that you both will be fine
Title: Re: Wish us luck !!
Post by: Zaini on May 18, 2009, 07:52:31 AM: Quote from: Sharmin on May 18, 2009, 04:44:26 AM
Zaini,

I am not sure but I was told by the thalassemia center (Sick Kids) in Toronto that transfusions are completely stopped and hemoglobin is allowed to drop significantly before hydrea is started. I believe that they also said that transfusions are not given with hydrea because transfusions suppress the marrow.

I could be wrong. Andy, do you know more about this?

Sharmin

Thats what i have heard about hydrea. :dunno

Thanks Cherianne. :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: maha on May 18, 2009, 07:54:19 AM: Hi Zaini and Sharmin
The use of hydrea on transfusing majors has been discussed before. It`s usually practised in countries where availability of safe blood is a issue. The use of hydrea is known to increase the tx intervals. Quite sometime back one of our members opkaram had mentioned that the use of hydrea had increased his daughters tx intervals from 30 days to 45days. I remember this clearly as I had asked my hema about it then, and he just declined it saying it helps sicklers not thals. When I learnt it was a chemo drug I lost interest in asking further.

take care
maha
Title: Re: Wish us luck !!
Post by: cherieann on May 18, 2009, 08:23:09 AM: Hi Zaini, Sharmin and Maha
I don't understand what I am reading re hydrea from you all.
I take one tablet daily and it has helped me last an extra week to 10 days longer.
My hb was never allowed to drop for me to get started and my transfusions have not been stopped or prolonged. Maybe each country is different with their guidelines.
We don't have any more of a safe blood issue as the next country and yet it is used on those of us that it helps.
It doesn't help everyone as the drug has to be adjusted accordling to the individual.
Some people only have a weekly dose of one tablet and receive the same results as someone like me on a daily dose and then there are the people who won't get any benefits regardless.
I do not have sickle cell anaemia, I am a Beta Thal Major who swears that it helps me. My hb has been in the 90's to 100 after 6 weeks so I am pretty lucky. The only time it is lower is when I have been sick which is understandable.
I hope that my small input may answer some of your questions or give you some other points to discuss with your haema.
Title: Re: Wish us luck !!
Post by: Zaini on May 18, 2009, 11:19:12 AM: Maha,

Yes thats the prob that it is a chemo drug.

Cherianne,

Wow,i never knew you were taking hydrea,and honestly i never knew if transfusing majors take it,I would like to talk about it with her hemo,the only concern again is adding another drug,and to be precise a chemo drug.

Andy,

I'd love to know what you think about it?

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on May 18, 2009, 11:27:26 AM: WOW Cheriean , you shared something reallly helping and informative .. i asked a few times to my doc abt Hydrea and she said it is not for Thal Majors ,it help's only intermedias .... i will again talk to her abt it ... Thanx alot Cherry :grin

Umair
Title: Re: Wish us luck !!
Post by: maha on May 18, 2009, 12:22:10 PM: Hi cherieann
I didn`t know you are on hydroxyurea as well. 6 weeks interval is great. I remember a trial run in Algeria on thal majors with significant improvement amongst all. If the same trial had been run in the USA or UK it would have probably been followed everywhere.

maha
Title: Re: Wish us luck !!
Post by: cherieann on May 19, 2009, 06:49:13 AM: Wow! ??? I thought I had posted before that I take hydrea.
Maha, nice friend, Zaini
It wasn't until you said, that I found out it was a chemo drug. The knowledge hasn't changed my mind as the results are worth it.
Although I am clinically diagnosed Major now, I was first diagnosed as being the high side of intermedia before they changed it. The reasoning was that my health had deteriorated to class as a Major.
Apparently I can produce 1% of blood which is why we decided to try hydrea.
Zaini I can understand more pills and lest of all a chemo drug, but for me it was the right choice for me. With my ferritin so high, I wanted to prolong the time between each transfusions to help get my ferritin down by chelation without the constant transfusions. It is an up hill battle that sometimes doesn't work and my ferritin stays still or climbs but as of oct last year my ferritin hit the 5000 then Jan this year 4000, Mar 3800 and this month 3200. :yahoo
Its still high but :yahoo its come down.
Title: Re: Wish us luck !!
Post by: Dori on May 19, 2009, 09:22:54 AM: Quote from: Manal on May 17, 2009, 03:47:10 PM
Maha, when vitamin C is heated, it is broken and is no more useful, i.e does not do its function.

Even i have read once that if you have a fresh orange juice and you just shake the bottle very hard, it is broken too cause it is a weak vitamin in composition

http://www.thalassemiapatientsandfriends.com/index.php?topic=1706.0;highlight=citric+acid

manal

I asked my father - who is a chemist - and it doesn't matter how hard you shake the bottle, the vitamin C won't break at all. You can't break molecules.

I haven't ask him about the heating yet.

@ maha: the recipe of ice tea sound yummy.
@ umair: i really hate it that all those producents add extra Vit C and iron to their products!!! Scanning labels isn't my favo job.
Title: Re: Wish us luck !!
Post by: Manal on May 19, 2009, 09:52:44 AM: Dore

That is good to know, i was told this by one of the nutrientists (spelling...) who was this when talking about fresh orange juice

manal
Title: Re: Wish us luck !!
Post by: nice friend on May 19, 2009, 01:12:51 PM: @ Cherriean :
WOW bcoze whenonce i asked to my Doc abt Hydrea she said "it benefit's to only Intermedias so its not for you" .... now i have a reason to discus it again that why i said " wow " ...

@Dore :
Ice Tea , you may check the label whether it has added vit-c or not ...
BTW , i like to scan labels bfore taking anything and i love to read nutrition facts on labels ....

sorry buddies i dont know much , soo correct me if i wrong at anything ...

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Andy Battaglia on May 19, 2009, 05:42:07 PM: Keep up the good work, Cherieann and get your ferritin down low, low ,low. :biggrin
Title: Re: Wish us luck !!
Post by: Dori on May 19, 2009, 07:47:22 PM: Quote from: Andy on May 19, 2009, 05:42:07 PM
Keep up the good work, Cherieann and get your ferritin down low, low ,low. :biggrin

>lowest<

:grin
Title: Re: Wish us luck !!
Post by: cherieann on May 20, 2009, 05:42:45 AM: :kissy Thank you Door, Andy and nice friend.
I promise that I'm still fighting :bat to knock the ferritin down.
Title: Re: Wish us luck !!
Post by: Sharmin on May 20, 2009, 02:45:20 PM: Good job Cherieann,
It is nice to see your iron levels coming down!

Sharmin
Title: Re: Wish us luck !!
Post by: nice friend on May 20, 2009, 05:01:50 PM: Way to Go Cheriean : keep fighting :catfight . we all r with u when-ever you need help ....

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: cherieann on May 21, 2009, 05:57:18 AM: :hugfriend Thank you guys. I really needed to smile.
Apart from the ferritin coming down, I have had a pretty lousy 4 weeks.
I had an infection from a skinned heel, then cramped neck and then the flu as well as being knocked back about the exjade.
We are still looking into the exjade and I will let you guys know.

Zaini I wish you and your angel all the best. You'll knock some sense into these doctors I'm sure.

Nice friend :rotfl

Sharmin :wub
Title: Re: Wish us luck !!
Post by: Zaini on May 21, 2009, 11:45:35 AM: Than ks Cherianne,I hope you'll feel well soon. :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on May 21, 2009, 02:19:12 PM: Quote from: cherieann on May 21, 2009, 05:57:18 AM
:hugfriend Thank you guys. I really needed to smile.
Apart from the ferritin coming down, I have had a pretty lousy 4 weeks.
I had an infection from a skinned heel, then cramped neck and then the flu as well as being knocked back about the exjade.
We are still looking into the exjade and I will let you guys know.

Zaini I wish you and your angel all the best. You'll knock some sense into these doctors I'm sure.

Nice friend :rotfl

Sharmin :wub

You were the one have problems with getting Exjade. I dunno, but if you want me to send a letter to the health minister then I am willing to do that. Think about it, ok? My offer is serious. Carepages is an USA community where you can set up your personal website/blog to contact family and friends with you during illness. On those pages they have asked us to write those letters/emails to ministers e.g. institutes.

I hope you feel well soon. :getwell

Dore
Title: Re: Wish us luck !!
Post by: nice friend on May 21, 2009, 06:53:52 PM: :getwell Cherry ....

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: cherieann on May 22, 2009, 07:13:17 AM: Door Thank you so much for your offer. I will keep it in mind.

I had an appointment with my haem last week and was informed that to date only one person in NZ has received funding for the exjade and another patient pays for it out of her own pocket.
Four other haems have been turned down as well and would now like to join forces with us to address the reasoning behind the decision. For my case they felt that we hadn't addressed all avenues and would like my port to be taken out and a new one put in, then we are to redo the desferal through it. :crazy My haem told them that we have done that and it wasn't a good option to take the port out because what if they couldn't find a good line for the new port.
My answer was a flat no! :bat Its okay for these committee members to suggest such a thing :huh but I'm the one who has to go through it all :banghead and know that it aint a good idea. :sadno
Now I am getting word through my pharmacist that Pharmac are looking into my case again.
I am crossing my fingers and praying.
If this don't work then I will let you know Door.

Nice friend - thanks :wub
Title: Hi Zaini
Post by: Sharmin on May 28, 2009, 05:14:00 PM: Zaini,

I haven't heard from you in a while, how is Zainab? I hope that her numbers are looking good.

Sharmin
Title: Re: Wish us luck !!
Post by: T @ r ! Q on May 28, 2009, 05:33:07 PM: Sharmin,

Zaini is having problems with her internet connection. She will be here as soon as it gets fixed.
Title: Re: Wish us luck !!
Post by: nice friend on May 28, 2009, 08:00:35 PM: I was thinking the same, she is not online since last 3 days , quiet long it is .. i hope her internet error will be fixed soon and she will be with us here on forum really soon .. Hey Zaini sis fix that ASAP , forum is already soo boring and slow ...

Best regards
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on May 28, 2009, 09:38:13 PM: Tariq,
Thank you for letting me know I was getting a little worried.

Zaini, I hope that your internet problems are fixed soon - missing you here.

Sharmin
Title: Re: Wish us luck !!
Post by: Manal on May 28, 2009, 09:52:41 PM: Miss you Zaini :hugfriend hope it won't be long :hugfriend :hugfriend

manal
Title: Re: Wish us luck !!
Post by: T @ r ! Q on May 29, 2009, 05:57:48 AM: Message from Zaini:

"I am missing you all and the forum terribly. I have net on my cell but I hate using it that way"
Title: Re: Wish us luck !!
Post by: nice friend on May 29, 2009, 01:59:26 PM: Zaini Sis,
Come back as soon as possible ...

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Zaini on May 29, 2009, 04:23:19 PM: Hi Everyone :biggrin

I am back,sorry for being out of touch,but as tariq told you my internet connection was having problems and apparently my modem refused to work any more, so i had to convince my isp of that.
I missed you all sooooooooooooooo much :grouphug i can't tell,this forum is one of those things in my life which i look forward to every morning,so happy to be back :kiss.

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on May 29, 2009, 04:28:52 PM: :biggrin Good to have you back, Zaini. :hugfriend
Title: Re: Wish us luck !!
Post by: Sharmin on May 29, 2009, 04:49:01 PM: Good to have you back Zaini!!
hugs to you and the kids!
Title: Re: Wish us luck !!
Post by: Zaini on May 29, 2009, 05:38:41 PM: Thanks Andy and Sharmin :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on May 29, 2009, 08:33:23 PM: Good to have you back sis, Welcome Back to site ...

Umair
Title: Re: Wish us luck !!
Post by: Zaini on May 30, 2009, 02:35:09 AM: Thanks Umair :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on May 31, 2009, 04:31:11 PM: I am glad your problem had been fixed. My notebook "died". Dad tries to bring it back to life. It's difficult: windows is at C and D. We removed it from D ofcourse but he don't understand it's gone and werestall windows at d and he refused to repair it. [any thoughts?] [no umair, can't bring it to a repair shop yet) Like you noticed, I got an iPhone and my parents pc but I can't use that.Anyway, I am glad you are back!!!!!

Best wishes, Dore
Title: Re: Wish us luck !!
Post by: Andy Battaglia on May 31, 2009, 05:30:23 PM: Dore,

D is the recovery drive and shouldn't be altered. You may have to reinstall Windows from the original CD to get the notebook running again, but of course, this means you will lose all the data on the hard drive. It will restore C and D to the original status and then Windows updates will have to be run to make it current. Perhaps the repair shop can find a way to back up the data first before reinstalling Windows.
Title: Re: Wish us luck !!
Post by: Zaini on May 31, 2009, 06:28:01 PM: Thanks Dore :) I hope your pc will be up and running soon.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on May 31, 2009, 08:17:46 PM: Andy ,
thats wat i usually do with my PC when-ever that try to die hahahha ... format C drive and then re-instal the windows. i always store all the data at D drive and thats why i never lost data when-ever i re-installled the windows .. sometimes when some error looks not ready to fix then i used to take another way and that is , to move all the data from D drive to Data Traveler and then Format disk ( Fdisk Command ) .... last month i took my PC to an experty for the very first time in past 9 years , hahaha , and that was bcoze of an interneal error like ( ram was Blown up , i mean that was died ) thats why i were failed to get wat is the probleme was, ram was not working properly so that was resulting the the windows files corruption ..then i opened up the CPU and did something very strange ( that is my hobby to open up CPU and play with hardwares sine computer was new to me , i several times took out the modems when-ever i start using LAN [Local Area Network] and i did the same many times with Graphic cards as well :wink :grin ) , so when experty ased me wat happened and i briefed him that i opened up the CPU and did wat-ever i wanted and wat-ever i have done with it many time since i m using this PC ... he smiled and took that in his custody , i told him ( to let him know that i know all the hardwares that are in it ) i told him that if he needed this modems instlalation files then he can call me and if he want that company's manufactured Graphic cards drivers then he can call me as well , i also told him that i have done many thing with its hardware ..... so next day my PC was ready but he said, he is unable to install VGA card and Voice card , then i told him that i have disabled both from BIOS and then he said " oh My GOD , it was the only probleme for wat i was worried since last 2 hours " hahhaha :rotfl ... so my PC gave him a very tough time hahaha ... anywayz ,, i think now should have some sleep so let me win-up everything , it will take sometime bcoze i have to read and reply a few other posts too .. soo , Take Care You all .. and best of luck to you Dore for your Pc .. and a :getwell message for your Pc :grin ... hope you'll back soon with your Pc and your Pc will be running fine very soon ..

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Dori on June 01, 2009, 12:38:41 PM: I am too tired to write a completely update with Iphone. The most imprtant stuff has been rescued. Dad was busy with installing windows but he is travelling for business now. I will spend some days away from home. However I must study hard, and Friday I will tanking up;)
Title: Re: Wish us luck !!
Post by: Nicky06 on June 06, 2009, 04:53:09 AM: I am wishing you luck my dear friend! Hoping that you can do your work a successful one!
Title: Re: Wish us luck !!
Post by: Zaini on June 06, 2009, 06:59:32 AM: Hi Nicky,

Welcome on the forum :welcome2

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on June 06, 2009, 08:04:27 AM: Hello Nicky ,
:welcomewagon to the community , ...

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Zaini on June 16, 2009, 03:50:15 PM: Hello everyone,

Z's pre transfusion hb last time was 10,at the interval of 4 weeks,so i thought to increase the interval a lil bit and see if she can hold hb between 9.5 and 10,so we decided to go on 4 and half weeks,like she had an appointment for 13th june and we transferred it to 17 june,that is tomorrow,and her hb today came back 8.5,its not only disappointing but a bit shocking too as i was hoping that in case it doesn't stay above 9.5,it must be above 9,and definitely not below it ,but it seems i was hoping too much,anyways now i am confused about her next appointment,should we stick to 4 weeks,or this time i shpould ask for an appointment of three weeks? Any suggestions ? ???

What is amazing is that usually i notice that she feels a bit down in her last week,but this time i didn't even notice that,and i was happy and thinking that may be we'd be able to extend her between transfusion gaps to 5 weeks,and then this hb of 8.5 :dunno.

We are waiting for her ferritin and Serum Creatinine results and SGPT will be done in the morning,so please pray that these results will be fine.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on June 16, 2009, 04:49:59 PM: Zaini,

the most important thing for me - and that is what I have understood from so many years' experience with thal- is first to try to keep your hb at the right level which is definitely never below 10. Do not get your hopes high and think that the longest the interval the better. What's the difference between 4 weeks' time or 4 and a half? None in my opinion. Not even the iron load if you follow a good chelation scheme. There is a big difference though if the hb is 9.5 or 10, as far as the stress of the body is concerned. And little Z needs no stress if she is to evolve normally.
The loss is bigger than the gain.
In my opinion an hb 10 with an interval of 4 weeks is ideal and together with a low ferritin achievement should do wonders for your little angel.

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on June 16, 2009, 04:58:42 PM: Thanks Lena :hugfriend

Yes i think i'll have to stick with what you said,hb of 10 and good chelation,i don't want her growth to be effected in any way,and really today's hb came as a big shock as its been months that she ever had hb this low,it was always above 9 and since last few months even above 9.5.I am confused about this time though,because after seeing hb of 8.5 her doc will be insisting on 3 weeks transfusion.

Everything was going fine and now i wanna kick myself for changing it :( .

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on June 16, 2009, 05:01:49 PM: Zaini,

I agree with Lena about maintaining a hemoglobin level above 9.5 but also want to remind you that hemoglobin levels are affected by hot temperatures, so it may be the summer heat that caused the measured drop. I wouldn't worry about why it dropped because it is probably nothing other than the temperature.
Title: Re: Wish us luck !!
Post by: Lena on June 16, 2009, 05:41:51 PM: Aafwan Zaini,

Do not worry. Even if your doctor insists on making the next transfusion after 3 weeks, you can always raise it to 4 later when you reach an hb of 10. It does not mean you will remain at 3 weeks' intervals for the rest of your life. In Saa Allah.
Title: Re: Wish us luck !!
Post by: nice friend on June 17, 2009, 01:45:20 AM: Zaini,
Best of luck for lil-z's Hg and interval .. i hope she will recover soon and her pre-tx will raise back above 10 and will remain in that ... Wish u and lil-z alot of luck for evrything .. :goodluck i agree with wat Lena & Andy has said , keeping HB above 10 is more important than long interval , in growing age .... i hope n wish that everything will back to good - INSHA-ALLAH

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on June 17, 2009, 04:44:17 AM: Hi Zaini,

cbc results are not always completely accurate. For the last two transfusions lil A has been having a cbc before his ivig - for some reason his hg was lower the day of ivig and higher one week later. Obviously his hg did not increase because his marrow is suppressed, but there is an element of error. If lil z does not look too low, chances are her hg is higher than 8.5. A while back lil A's hg at week 3 was 108 and then at week 4 it was 114, that indicates a big range of error.

I hope that lil z's hg is predictable and high in the future,

best of luck,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on June 17, 2009, 02:31:57 PM: Hi Guys,

Thanks Andy,Umair and Sharmin :hugfriend

Transfusion went well Alhumdulillah,but her ferritin is not budging,its in 1500s since last 4 months,i discussed it with the doctor in hospital today and he said as you are monitoring her well what with all the tests done regularly and everything,you can increase her dose to 800 mg,to see if that changes things,What do you guys suggest? Should i increase her dose to 800 mg or should i stick to 700 mg,her weight hovers between 27 and 28 kg,today it was 27.1 kg.

Good news is that SGPT went down to 49,last time it was 59,Serum Creatinine was 0.7,and ferritin 1552,last time it was 1527.

So any suggestion guys ? about the dose ?

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on June 17, 2009, 03:23:08 PM: Zaini Sis,
i think you may increase dose for a month to get down iron after that decrease the dose if SGPT elevate again ...

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Lena on June 17, 2009, 04:47:36 PM: Zaini,

does she take ferriprox too? if not, why?

Lena.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on June 17, 2009, 05:07:28 PM: Zaini,

According to 30mg/kg, she should be in a dose of around 800 mg daily. It may be time to bump it up a bit.
Title: Re: Wish us luck !!
Post by: Zaini on June 17, 2009, 05:57:50 PM: Thanks everyone, :hugfriend

Lena,

She is taking Asunra aka Exjade,according to Novartis Exjade is to be taken alone,i know there are people who are taking desferal and its working,but i haven't heard of anyone taking Exjade and Ferriprox together.

Andy,

Yes i think i'll increase her dose.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on June 17, 2009, 05:59:24 PM: Quote from: lena on June 17, 2009, 04:47:36 PM
Zaini,

does she take ferriprox too? if not, why?

Lena.

A combination of Exjade & Ferriprox?

Never heard before..

Zaini: Don't feel quilty. I do the same. What Lena says makes sense to me, but there is always a voice which said "why don't we give it a new try".

As for the ferritin. Has she have any side effects? I have read the update from Novartis, you can go to 40mg/k when Exjade isn't doing his job yet. However: Do remember that it took me 8.5 months before I saw THE drop.

I am glad to hear the transfusion went well!!

xxx Dore
Title: Re: Wish us luck !!
Post by: Zaini on June 17, 2009, 06:09:11 PM: Thanks Dore,

Z hasn't reached even 30 mg/kg,so my first goal would be that,and luckily today i had a chance to have a little chit chat with the ward doctor at the hospital,and he said that when patients start Asunra,we usually ask them not to expect any thing until one year,and its been almost 6 months Z has started asunra.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on June 17, 2009, 06:25:04 PM: Zaini and Dore,

In our hospital there is a liittle girl of about 9 who has been taking ferriprox and exjade together for 6 months or so now and she is doing well. Of course I have to agree with you that she is an exception. Not many thals are on this combination.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on June 17, 2009, 10:16:07 PM: Lena,

I am very much interested in any reports about using Exjade and Ferriprox together and the results. Most doctors have been wary of using the two drugs together, so this is a rare case. If you can get any information about how well she does on this combination over time, please keep us informed.
Title: Re: Wish us luck !!
Post by: Sharmin on June 17, 2009, 11:37:43 PM: Zaini,

Another issue is that the first thing exjade does is remove iron from tissues - such as the liver, the skin and releases it into the plasma. In order to actually see how well exjade is working you would need tests that can measure actual iron levels - and I know that these tests are not available to you. I actually think that lil Z is doing better than ferritin results indicate - remember some patients see huge increases in ferritin levels when they begin using exjade but lil did not have this happen. I believe that her tissue iron levels are much lower than what you may think that they are, especially because she has not transfused for too many years and then she was on combination L1/desferal treatment from such a young age. I hope that ferriscan is available to you soon so that you can have some reassurance.

Remember in the past lil As ferritin levels and actual liver iron levels were very different. I think that the ferritin level readings will appear lower during the next 6 months. Best of luck with what you decide with her doctor.

Much love to you and lil z,

Sharmin
Title: Re: Wish us luck !!
Post by: nice friend on June 18, 2009, 03:23:27 AM: well, i dont know from where i got this argue about using Exjad+Ferriprox in combination therapy but i m sure its true :
doctor's avoid using these medicines togather bcoze if one or both medicine react a lil wrong and patient get side-effects of on or both medicine then that will be dificult to figure out that it was bcoze of which medicine and if that is bcoze of both medicine .. both meds have their side-effect mild and worst both kind of , so they dont like to use both meds togather, and i think its never been tested anywhere , i mean no trials at all ...

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Lena on June 18, 2009, 04:54:08 AM: Andy,

In Greece we try a lot of new things but never without close monitoring. Up to now this little girl is o.k , no side effects, she avoids desferal hindering her growth (and I think this was the main reason the doctor replaced desferal with exjade), she has also gained weight, as she was skinny and had no appetite while on ferriprox and desferal. I will get more info on this and let you all know.

Umair,

we are always critical on everything new. What about the desferal and ferriprox combination? Have we not been critical and suspicious on that too? I know I personally had been. But look at the results of combination therapy! If a side effect happens while on desferal-ferriprox combination, wouldn't you raise the same question? which med to blame? and if your reply is that we know which is which and what side effects each drug has, I will say the same for exjade and ferriprox: we are aware of the side effects of each drug. To tell you the truth originally I was not so much for exjade but I try to keep an open mind. As for Novartis it is logical not to propose a combination of the two drugs: the company tried from the scratch to pass exjade as an "orphan drug".

Anyway, let's see what the course will be.

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on June 18, 2009, 08:01:33 AM: Sharmin,

I do agree with you about tissue iron level,but what worries me a bit is that we have seen cases where people were religiously compliant but they still ended up having iron in their organs,and since we don't have any means to measure organ iron,this thing sometimes worries me a little,specially when Z puts her hand on left side of her tummy and complains of tummy ache,it may be nothing,and it doesn't happen often enough,but when she complains about pain in a specific area rather then whole tummy,it worries me a little that who knows whats going on in her body :dunno.

I asked the doctor about T2* and Ferriscan,they are not available in Pakistan,he said he went to last thalassemia conference and there he met people who design software for T2*,he came back and told this about the head of hemotology at the hospital,but he said costing was an issue and as knowing affordability issues,this was obviously not going to be profitable for them :( although they have all the setup and machinery available ,they only need the software.

Lena,

I was really interested in the combination of ferriprox and exjade as they both are oral meds and are easy to take,but i was told that as they both work at cellular level and remove iron from tissues ,there is no need to take them together,but this would be a great advantage for people who either have desferal allergy or are on exjade but had severe iron overload in heart,do keep track of that little girl.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on June 18, 2009, 01:07:24 PM: you're right Lene, but i was talkig to the aspect of countries where there isn't a good facilities to keep a close watch on subject ( patient ) body's reactions .. people who r living in the countries where is monitoring is not soo good and accurate shouldn't try these complicated ways of treatment ... but :agree at all wat you said .. thanx for correction , God Bless You ...
let's hope for better results :) in treatment of thalassemia and Chelation ...

Best Regards
Umair
Title: Re: Wish us luck !!
Post by: Dori on June 18, 2009, 02:35:12 PM: had no appetite while on ferriprox and desfera

That's pretty strange. I could eat day AND night while I took 3x3 times ferriprox. Since I started Exjade I lost 10 kilo's & add 2 on my weight again.
Title: Re: Wish us luck !!
Post by: baal on June 18, 2009, 03:53:00 PM: same on me doore.....

i get 25 kilos heavyer with the ferriprox......
from 70 to know 95.........

panos
Title: Re: Wish us luck !!
Post by: Manal on June 19, 2009, 01:28:28 AM: Quote
although they have all the setup and machinery available ,they only need the software.

Zaini, in my country here, they don't have the software, but they just send the CD of the MRI scans to be interrpruted in Australia and then they write the report there and send it back to Egypt again

manal
Title: Re: Wish us luck !!
Post by: Zaini on June 19, 2009, 04:28:29 AM: Manal,

Thanks for telling me this,i'll definitely talk about this with the doctor.

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on June 19, 2009, 02:05:42 PM: You are welcomed Zaini, good luck. I hope it will work.

Can Sylivia (ferriscan) comment on this.

manal
Title: Re: Wish us luck !!
Post by: Zaini on June 19, 2009, 05:16:40 PM: Good idea Manal ! i'll PM her.:)

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on August 08, 2009, 06:58:54 AM: We are at the hospital for tx,Z's SGPT came back 231 :( doctor is not decided if he will reduce the dose of asunra but he asked me to see him again b4 leaving for home,her ferritin is 1400 something,any ideas ???
Title: Re: Wish us luck !!
Post by: Andy Battaglia on August 08, 2009, 02:30:38 PM: Zaini,

Since her ferritin has continued to drop, it won't be a critical matter if little Z has to lower her Asunra dose temporarily. The SGPT is not at any dangerous level, but it may cause some concern about Asunra, so if the doctor wants to exercise some caution at his point and lower the dose, go along and see what the next test reveals.
Title: Re: Wish us luck !!
Post by: Zaini on August 08, 2009, 04:08:18 PM: Andy,thanks for ur input,i was anxiously waiting for it,her doctor has asked me to stop asunra for a week and then repeat the test,i realy dont like the idea of stopping chelation entirely even for a week,i'd rather lower the dose or even cut it in half,Andy plz advice what do you think i should do? Drop chelation for a week or cut off the dose? She is on 800 mg and her weight is 27 kg. Thanks again Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on August 08, 2009, 04:30:58 PM: Zaini,

Can you try half dose for a week? Would the doctor go along with that. I would also advise to increase any natural chelators like IP6 and green tea extract and also have her drink more tea during this period.
Title: Re: Wish us luck !!
Post by: Zaini on August 08, 2009, 06:27:00 PM: Andy,

I don't know if doctor will listen to it or not,but i guess i'll do that anyway,i'll give her 400 mg for a week and then will repeat the test, once when her SGPT was 94 her hemo said you'll have to stop asunra once it crosses 100,so i think she'll say the same,we have her appointment for 11th of august.today it was ward doctor who suggested giving a break for a week.

I hope we won't have to stop asunra permanently,it would be devastating.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on August 08, 2009, 08:55:26 PM: Hi Zaini,

I hope that her levels return to normal soon. Taking a break should reduce them quite quickly. Please keep us posted.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on August 19, 2009, 06:03:45 AM: Hi Guys,

As i posted earlier we had to stop Lil Z's Asunra as her SGPT went really high,it was 231 at that time,we stopped Asunra for a week and rechecked her SGPT today,and it came back 66,so it has lowered although is still above normal ranges,her doctor also asked us to test her Creatinine which came back 0.6,and Total Bilirubin which is 0.9.So i asked her doctor and she permitted to resume Asunra although on a bit lower dose,previously she was on 800 mg,now we'll start again with 600 mg,and build up the dose gradually as we did before,so i am hoping that her SGPT won't increase that much again.

Thanks for your support.

Zaini.
Title: Re: Wish us luck !!
Post by: Kathy11 on August 19, 2009, 08:33:03 AM: Goodluck to little Z' :bighug
I hope this time you will be lucky your enzymes will be steady, keep finger cross

Zaini keep trying, because it is the only ways to succeed.

take care
Kathy
Title: Re: Wish us luck !!
Post by: Sharmin on August 19, 2009, 03:34:14 PM: Zaini,

I am glad to hear that my friend. I hope that her levels stay well within the normal range when you resume asunra. When lil A was around 6 he had some sensitivity to desferal so we took it away for a while. The sensitivity did not occur again after we resumed. I think that lil Z will do well now. We have just restarted exjade with lil A, he is supposed to be on 1000 mg 5 times a week and 625mg on the weekends - however we have just started him on the 625mg for now. We will increase his dose slowly, as you are doing for lil Z.

Take good care - I hope to hear good news in the future about our little sweetie :hugfriend :hugfriend

Sharmin
Title: Re: Wish us luck !!
Post by: Canadian_Family on August 19, 2009, 04:18:58 PM: Hi Zaini,

This is very good development for Little Miss Z. I thought 800mg of exjade was higher for her age. Pardon my ignorance but what is Zainab's ferritin, its importatn to manage the dosage of exjade with minimum side effects. The balance is delicate and should be carefully monitered by doctors.

Keep us posted.
Title: Re: Wish us luck !!
Post by: Zaini on August 19, 2009, 05:48:40 PM: Hi Eveyone,

Thanks Kathy and Sharmin, :hugfriend

Thanks Canadian family,

Lil Z's ferritin checked this month was 1400,and its been roaming around 1400 to 1600 since she started Asunra in January,and if calculated by the weight,her dose was almost 30mg/kg,as her weight is 27 kg.Now we will resume with 600 mg,and hopefully SGPT will remain in control.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on August 19, 2009, 06:09:39 PM: We have a Dutch saying 'De aanhouder wint'. My English slipped a little bit out my brains, but it means something as 'if you don't stop trying, you will win'.

Good Luck, Miss Little Z :hugfriend
Title: Re: Wish us luck !!
Post by: Manal on August 19, 2009, 09:46:57 PM: Thanks Zaini for the update. I feel this is a good sign and i hope she will continue doing well inshallah
take care :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on August 20, 2009, 06:29:37 AM: Thanks a lot Dore and Manal :hugfriend Definitely we won't stop trying :) .

One thing else i forgot to mention was her PHT,it was 71 and the doctor said it was in the high normal range,i don't know what difference would it make and what does the reading interpret? Any help ??? .

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on August 20, 2009, 01:58:21 PM: Zaini,

In reference to little Z's parathyroid level, what is her vitamin D level? This has much to do with the function of the parathyroid.
Title: Re: Wish us luck !!
Post by: Zaini on August 21, 2009, 09:25:55 AM: Andy,

We didn't do Vitamin D test at the same time,but when checked last time i think a couple of months back it was 18,and her calcium was also normal low,so i think it effects PTH?

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on August 21, 2009, 05:59:57 PM: If the vitamin D level is not at least 30, the parathyroid hormone level may be affected.

http://www.clinlabnavigator.com/Tests/VitaminD.html
Quote
A 25-OHD concentration of 20 ng/mL is adequate to prevent rickets and osteomalacia. However, a recent editorial in JAMA (292:1416-18, Sep 22/29, 2004) stated that some individuals with a 25-OHD level of 20 ng/mL already exhibit compensatory increases in PTH and suggested that a 25-OHD level of 30 ng/mL is necessary to maintain normal levels of PTH.

I think getting her D level is the real key to controlling the PTH.
Title: Re: Wish us luck !!
Post by: Zaini on August 21, 2009, 07:01:23 PM: Thanks Andy,

We are working on it,she is taking One Alpha .25 mcg daily,which is activated vitamin D3.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on August 23, 2009, 01:25:34 PM: Zaini Sis,
i hope everything is fine now at ur and Lil-z is doing fine ... wishu and lil-z all the best :)

best regards
umair
Title: Re: Wish us luck !!
Post by: Zaini on August 23, 2009, 02:42:01 PM: Thanks Umair,hope you are doing well and enjoying Ramadan :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on August 23, 2009, 03:42:20 PM: Hi Zaini,

I hope that everything will work out well for lil Z. I think that vitamin D will be very helpful.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on September 06, 2009, 07:45:34 AM: Thanks Sharmin :hugfriend

In last month Lil Z's SGPT raised to 231,Asunra was stopped for a week,SGPT recheckd,came back 66,her hemo asked us to resume 600 mg of Asunra,now after 15-16 days,means yesterday,she had a transfusion and we rechecked SGPT and its again 127,:( i really don't know why it keeps raising again and again and what can i do to stop that.

I don't know what her hemo would say,would she let us continue Asunra or not :( .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on September 06, 2009, 04:29:12 PM: Hi Zaini,

I am not sure what the right answer is to that. When lil A's SGPT rose the docs in Oakland said that it was not significant and over time (even though we did not change his exjade dose) it returned to normal. It is hard to know what will happen over time because now lil A is on 1000mg of exjade a day (5 days a week) and 625mg a day for 2 days. We will know after Tuesday what his latest value is.

I hope that lil Zs levels will return to normal on their own, please let us know what the doctor says,

Sharmin
Title: Re: Wish us luck !!
Post by: Andy Battaglia on September 06, 2009, 06:49:19 PM: Sharmin,

The reason the doctors were not concerned is because these small increases don't imply any danger. At levels of 5 times normal for SGPT, doctors will stop Exjade, or sometimes just lower the dose for awhile. With serum creatinine, Exjade will be stopped when there is a 33% increase in adults in creatinine two readings in a row. In children, two creatinine increases in a row will result in a lowering of the Exjade dose until it resolves. I look at 300 as the borderline for SGPT. At this point, the Exjade dose should be reduced until the SGPT drops back to normal.

Zaini,

127 is not high enough to force Exjade dose reduction. Please make sure little Z is getting plenty of water daily.
Title: Re: Wish us luck !!
Post by: Zaini on September 06, 2009, 07:50:40 PM: Thanks Sharmin and Andy :hugfriend

Lets see what her doctor has to say about that,i have to inform her and she'll be available on tuesday.

Thanks again,

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on September 07, 2009, 09:58:43 PM: AOA Zaini sis,
Wishing all the best of luck to Lil-z ...

lots of god wishes
and best regards
umair
Title: Re: Wish us luck !!
Post by: Zaini on September 08, 2009, 04:40:18 AM: Thanks Umair :)
Title: Re: Wish us luck !!
Post by: Sharmin on September 09, 2009, 04:24:24 AM: Best of luck to lil Z, Zaini. I hope that all of her levels are good and that her ferritin levels start coming down very soon.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on September 09, 2009, 07:03:18 AM: Thanks Sharmin,

I really hope that her ferritin will come down,so that we'll be able to go with a lower dose of Asunra,which will be less side effects and more economical :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on October 28, 2009, 11:24:18 AM: Hi everyone,

I wanted to give a little update,this time when Little Z went for transfusion,we gave sample for SGPT and it came back 40,Alhumdulillah close to normal,and her ferritin is decreasing too,it went from 1400 to 1261,its a very small decrease but i am still happy that it has started to decrease,she is on 600 mg Asunra,and we are sticking with the same dose,hopefully her ferritin will lower more :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on October 28, 2009, 12:21:06 PM: Thanks Zaini for sharing the wonderful news, congratulaation dear :hugfriend

Keep it up, with love to you and little Z :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Sharmin on October 28, 2009, 01:19:30 PM: Zaini,

Thanks for sharing the good news. Little A's SGPT had increased for a short duration and then returned to normal. Once it was normal for a while, his exjade dose was increased to 1000 (5 X a week) and 625 (2 X week). Soon after that, his ferritin decreased to 500. Exjade requires a lot of patience, but once things are under control, it can reduce the ferritin to near normal levels. I hope that will be the case for our lil Z very soon.

Keep us posted!

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on October 29, 2009, 06:04:24 AM: Thanks friends :hugfriend

Sharmin,

How much exjade Lil A is taking right now ? since his ferritin is 500?

Zaini.
Title: Re: Wish us luck !!
Post by: maha on October 29, 2009, 06:35:27 AM: Hi Zaini
Glad to hear Lil Z`s SGPT levels are close to normal and her ferritin is on the decline.

maha
Title: Re: Wish us luck !!
Post by: Zaini on October 29, 2009, 06:39:52 AM: Thanks Maha :hugfriend.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on October 29, 2009, 02:03:57 PM: Hi Zaini ,
Thanx for the super good update , i m glad to hear this .. may Lil-Z will do more fine with Exjade/Asunra ... May ALLAH (God) bless u, ur family n especially lil-z ..

Lots of best regards

Umair :)
Title: Re: Wish us luck !!
Post by: Sharmin on October 29, 2009, 05:44:12 PM: Hi Zaini,

Lil A is still getting the same dose (1000mg/5 days a week) & (625mg/2X a week). The reason for remaining on a high dose, despite having low iron levels is that we are keeping up with a less predictable transfusion requirement. Although better than before, his hg requirement is still higher than most children.

I think that lil Z will do even better, once her iron levels get down they will be maintained on a lower dose :) It sounds like things are going in the right direction now.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on October 30, 2009, 02:15:16 PM: Thanks Umair and Sharmin :hugfriend

I hope soon her ferritin will be below 1000.

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on October 31, 2009, 06:21:51 AM: Quote
I hope soon her ferritin will be below 1000.
INSHA-ALLAH (("God willing")), zaini sis , Ferritin will come soon below 1000 ...

Umair
Title: Re: Wish us luck !!
Post by: Dori on October 31, 2009, 08:14:31 PM: Quote from: Sharmin on October 29, 2009, 05:44:12 PM

Lil A is still getting the same dose (1000mg/5 days a week) & (625mg/2X a week). The reason for remaining on a high dose, despite having low iron levels is that we are keeping up with a less predictable transfusion requirement. Although better than before, his hg requirement is still higher than most children.

Why two different doses of Exjade in a week? Why not all week long 1000mg? The other thing I want to say is that Lil A and I are taking exactly the same dose. I too take 1000mg, but then every day. Is this dose not way too high for him? What interval of blood transfusion does he have?
Title: Re: Wish us luck !!
Post by: Sharmin on November 01, 2009, 02:36:39 AM: Zaini,

I just love the picture you have of lil Z. God bless our little princess.

Dore,

Lil A is on a higher dose of exjade (approx 30mg/kg) in place of the combination therapy her was on. He receives 20cc/kg of blood every 3 weeks - which is higher than the recommended 15cc/kg of blood every 4 weeks. It is best at his age to stay ahead of iron accumulation, especially considering that his high tx frequency resulted in a little bit of iron overloading in 2008. He will have a SQUID and T2* repeated in February. By then we will also see if his tx frequency stabalizes in order to decide if his exjade dose needs to be adjusted.

The doc felt that it was best to give him a higher dose for 5 days, and a lower one for 2 days in order to reach what she felt was the best overall chelation for him. I wonder what they will do when in February. I would like to see his iron remain below 500, actually close to 100 if possible while he is growing.

Perhaps you require a maintenace dose, while lil A requires a slightly more aggressive dose ??? ???

I hope that your chelation is going well :)

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on November 01, 2009, 10:04:23 AM: Thanks Sharmin,

It was eid day so she was reaallyyy happy :wink

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on November 01, 2009, 12:45:19 PM: Quote from: Sharmin on November 01, 2009, 02:36:39 AM

I hope that your chelation is going well :)

Well? It stays around 1000. I'd tx at friday and it was a bit under 1000 now. Things are very hectic here, no free day untill 5 December if not Christmas. My hgb remains to stay low. I think we finally have found a new hgb cyclus. (more about later) But I am getting restless again so maybe I try to reach the 500 before 2010. My Exjade tests are set up every 3 months now, so I will ask for an extra one before 2010. :wink

I must get it low quickly, because I must be able to tell all pkd people of the worldl that chelation really helps!
Title: Re: Wish us luck !!
Post by: Bostonian_04 on November 02, 2009, 04:23:42 PM: Zaini,

It is great to know that Litthle Z's ferritin is coming down. Her recent picture is very pretty. You are doing an awsome job managing her Thal.

Dore, it is wonderful to hear that you have lowered your ferritin so well....
Title: Re: Wish us luck !!
Post by: Zaini on November 03, 2009, 05:59:40 AM: Thanks Bostonian :hugfriend

Hopefully her next ferritin reading will be even lower.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on November 03, 2009, 04:45:03 PM: Zaini,

I wish that most parents were allowed to start on exjade/desferal combination as it is a quick method of lowering iron in the organs and plasma. Once iron levels have been lowered, exjade can maintain it quite nicely. I think that in lil Z's case combination therapy for 6 months would be enough to get her iron levels very low and then you would be able to maintain her nicely on exjade.

The docs in Oakland feel that it is a very safe and extremely effective combination. I hope that they will publish their data very soon and that more people will be able to try it. I think it would be even better to have a combination of L1/exjade or
starch-desferal/exjade.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on November 03, 2009, 04:49:59 PM: Sharmin,

Yes you are right,and once this research is published and if i can get a hold of it,i might be able to convince her doctor,the problem is,the doctors here see patients with such high ferritin on regular basis,that 1200 doesn't seem much to them,and when i say that i want it to be below 500,they say 1200 isn't bad either,thats why they are not ready to take any new steps or measures,because according to them 1200 is just fine,which i know is not :dunno .

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on November 03, 2009, 04:54:59 PM: Since Exjade was introduced, there have been doctors in the US who have prescribed the Exjade/desferal combo even though no testing had been done. The needs of the patients outweighed concerns about using the combo. As a result, I now get to see the wonderful updates on Facebook from Masuma, who is fully enjoying married life these days. A couple years ago she was in the ICU with congestive heart failure. Very aggressive chelation with Exjade and desferal brought her ferritin back down under 1000 and she is doing great.

If your doctor is willing to monitor the combination, I see no reason any doctor should not prescribe this combo in cases where it is needed. Please do not undertake this on your own. Have proper supervision and close monitoring. I will add that in NYC, I did hear some comment from a well known doctor about how many doctors will not wait for trials but will be proactive and trial it in patients themselves. This doctor nodded with approval of this practice. We can't always wait for trials. Sometimes, the needs of the patients are far more pressing.
Title: Re: Wish us luck !!
Post by: Zaini on November 03, 2009, 05:08:49 PM: Thats the thing Andy,her doctor is not willing to approve the combo and i don't wanna take this step on my own,so as for right now,we are just working with the exjade and hoping that it will lower her ferritin.

The thing that worries me is that we don't have T2* or ferriscan available,so we don't exactly know in what condition her organs are,its been 5 and a half years she has been transfusing and her ferritin has never gone higher then 2400,that seems like a good thing but we know that even with low ferritin readings you can end up with iron over load in organs,so as of right i can only pray that these technologies will be available here one day.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on November 03, 2009, 05:10:56 PM: Zaini,

I wonder if your doctor would be willing to talk to the doctors in Oakland, and do the appropriate tests with lil Z. In the past, levels between 1000 - 2000 were deemed acceptable for thals, and these thals, although they are growing up and living long lives are having some issues such as infertility, other endocrinology issues etc. I truly believe that keeping a child's hemoglobin as close to normal (10) as possible and keeping the iron levels as close to normal as possible is the key to having them grow up normal and healthy.

I am confident that her organs are most likely free of iron because of the short duration that she has been transfused, and because she was on a very good chelation plan. Especially, the L1/desferal - and now the exjade.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on November 03, 2009, 05:44:04 PM: Sharmin,

We are keeping her pre tx hb on 10,and working to lower down the ferritin :yes.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on November 03, 2009, 05:44:52 PM: Zaini,

why did they stop her from L1? because they turned her in exjade? I tend to think that exjade alone is good only for low ferritin levels.

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on November 04, 2009, 09:33:37 AM: Yes Lena,They stopped L1 once she started exjade,and they are not allowing us to use any combo with exjade.
Title: Re: Wish us luck !!
Post by: Lena on November 04, 2009, 12:22:25 PM: Zaini,

First of all they did well to stop Zainab from desferal--better exjade or ferriprox alone in her age. As to not allowing you to use the ferriprox-exjade combo...well, that's because there is no protocol yet and there is no way at all to convince them about that. It takes a little bravery from the doctor's part to dare do that. If it works, that would be the end of most of our problems. Of course one has to keep in mind that exjade was promoted as an "orphan drug", as monotherapy that is, and that's why there have not- up to now- been any clinical trials on the combo with ferriprox. But I wonder: how did the desferal-ferriprox combo start? Were there any clinical trials back then before they accept to apply it? Anyway, the only combo with exjade at the moment is that of desferal-exjade, both chelators made by the same company. Were there any clinical trials of desferal-exjade combo? I am not aware of any. If someone knows, please tell us. I am curious...

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on November 04, 2009, 06:00:12 PM: Lena,

I am not aware of any clinical trials but Little A was part of the study done at Oakland on this combo,i hope Sharmin would be abl;e to tell you more about it.

Zaini.
Title: Re: Wish us luck !!
Post by: Emby on November 04, 2009, 06:36:11 PM: Dear Zaini,

It will come down InshaAllah. Both our boys ferritin peaked at 2500/2900 before it started to decline and that was just with desferal. Lil Z is on a better chelation regime i feel.
I'm sure Allah Ta'ala will make things easy for your little Hafizah.....how is she getting on with hifz?...she looks beautiful by the way.

Sending heart felt love your way,
Emby
Title: Re: Wish us luck !!
Post by: Zaini on November 05, 2009, 06:58:20 AM: Thank you so much Emby, :hugfriend

I am sure hopeful that it will come down,She is getting on fine with the hifz,she is on "Surah Yasin" (She started backwards),hopefully she'll finish it in couple of years.

Much Love , :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Emby on November 07, 2009, 12:41:55 PM: MASHAALLAH!!!!.....thats fantastic....I pray Allah make the memorisation easier and easier for her...and for you as parents the ability to help and support her all the way.

Lots of Love,
Emby
Title: Re: Wish us luck !!
Post by: Zaini on November 07, 2009, 06:53:40 PM: Thank you so much Emby :hugfriend

Prayers are our precious asset ,we definitely need them :yes .

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on November 16, 2009, 06:55:56 AM: Hello everyone,

Lil Z woke up with a fever of 102 degree F today,its probably due to cold,i am going to the physician in a bit,but should i keep giving her Asunra or stop it ?

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on November 16, 2009, 07:45:31 AM: Zaini,

I know that we stop ferriprox and desferal when in fever. I would do the same with Asurna. But of course this is only my opinion.

Lena.
Title: Re: Wish us luck !!
Post by: Dori on November 16, 2009, 11:19:49 AM: Good luck with your appt. I wish her speedy recovery!
Title: Re: Wish us luck !!
Post by: Manal on November 16, 2009, 11:25:56 AM: Sending my love to you and littel Z :hugfriend Wishing her a speedy recovery. Please update us

manal
Title: Re: Wish us luck !!
Post by: Sharmin on November 16, 2009, 11:48:56 AM: Wishing lil Z a speedy recovery. I would give her a break from the asunra today.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on November 16, 2009, 12:14:42 PM: Thanks everyone :hugfriend

Her fever is down a bit,but not gone,doctor said its probably weather which is changing now a days and Lil Z was telling me that everyday a kid is absent from her class due to fever,so i hope its nothing to worry about,My son also had fever for a day last week.

I guess i'll go with Sharmin's advice and give her a break from Asunra for today,i hope fever will be gone by tomorrow and she'll be able to resume Asunra.

:grouphug

Zaini.
Title: Re: Wish us luck !!
Post by: Canadian_Family on November 16, 2009, 06:17:52 PM: Hi Zaini,

Gving a break is a good idea. We stop Exjade everytime there is fever, vomiting or nausea. In simple words, HSC has advised that everytime when there is a suspicion of any type of virus, please stop exjade. The virus go crazy if exjade is administrated. Remember, Little Miss A went to hospital last year in November with severe vomiting and nauea (same scenario).

The only logical explanation I came up with that exjade will increase ferritin in blood as it chelates the iron from the organs, viruses love iron rich envoirnment and multiply fast (just my wild assumption). So giving a break is good.
Title: Re: Wish us luck !!
Post by: Lena on November 16, 2009, 06:46:03 PM: You are right Canadian Family,

I know that this happens with desferal---it nourishes viruses (yersinia, klebsiella, mucoplasma) and that's why we stop desferal when having infection. Better stop everything.

Lena.
Title: Re: Wish us luck !!
Post by: Dori on November 16, 2009, 08:59:35 PM: Quote from: Canadian_Family on November 16, 2009, 06:17:52 PM
The only logical explanation I came up with that exjade will increase ferritin in blood as it chelates the iron from the organs, viruses love iron rich envoirnment and multiply fast (just my wild assumption). So giving a break is good.

Sharon Moalem writes about this in his book "Survival of the sickest". It's worth to read.
Title: Re: Wish us luck !!
Post by: Zaini on November 17, 2009, 04:39:49 PM: Thanks everyone,She had fever in the morning but thankfully it was gone by noon,she took a nap in the afternoon and when she woke up she still had no fever so i gave her Asunra,she is feeling better now.

Canadian Family,

I think your assumption is pretty good :yes .

Zaini.
Title: Re: Wish us luck !!
Post by: Canadian_Family on November 17, 2009, 05:51:06 PM: Thanks Lena and Zaini.
Title: Re: Wish us luck !!
Post by: Keep Smiling on November 18, 2009, 02:12:32 AM: i just came to know about zaini fever now, you know i had been busy with exams :rotfl :rotfl

how is she now????
lots of love for zaini..........
Title: Re: Wish us luck !!
Post by: Manal on November 18, 2009, 02:16:49 AM: Zaini

I am happy to kow that the fever is gone, please take care and give her a big hug from me :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Sharmin on November 18, 2009, 03:18:41 AM: I hope that our Lil Z is completely better now. Big hug to our princess:)

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on November 18, 2009, 06:54:36 AM: Thanks every one :grouphug

Lil Z is off to school today,fever has gone,leaving a foul feverish taste in her mouth,due to which she is a bit cranky coz nothing tastes good,its her last week before transfusion,i was able to get transfusion appointment a couple of days earlier as her unit tests at school are coming up and i want her fresh and strong for the tests,and fever does bring hb down so i assumed that her hb might be a lil low,it may be not but i just didn't wanna take any chance as she is looking pale at the moment.Fever was probably due to cold as she still has a little bit of cough.

Thanks again :grouphug

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on November 20, 2009, 01:48:30 PM: @ Zaini Sis ,
Glad to hear that everything is fine again and she is back to school again ... wishing her all the best of luck , health and life .. may God bless her with everything she need ( Ameen ) ...

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Zaini on November 20, 2009, 06:05:34 PM: Thanks Umair :hugfriend .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on November 20, 2009, 06:06:54 PM: I hope lil Z is all better now and that her tx went really well:)

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on November 20, 2009, 06:15:56 PM: Thanks Sharmin :hugfriend

She is much better now,her pre transfusion hb this time was 9.1 ,which i am assuming was because of fever and we have taken next appointment for 3 weeks,but the thing thats worrying me is her SGPT,last month it was 40 or 44,and this month again it came back 80 :( ,Could fever effect SGPT readings ? I hope it will be down by her next transfusion.

Zaini.
Title: Re: Wish us luck !!
Post by: Keep Smiling on November 21, 2009, 09:56:17 AM: May God bless her...............
Title: Re: Wish us luck !!
Post by: Zaini on December 20, 2009, 08:29:09 AM: Little Z's SGPT has risen again :( its 145 now,i don't know what to do since she is already on a low dose,that is 22mg/kg,and her ferritin was checked in October and it was 1261,its decreasing painfully slowly,i haven't checked it with her doctor yet,as it sunday today,i'll call her tomorrow. :( .

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on December 20, 2009, 09:09:25 AM: Zaini,

why is she not on ferriprox alone? I am not talking about ferriprox-exjade because your doctor does not suggest it as I remember. And I am not sure 22mg/kg you mention is so low a dosage. The lowest one which I am going to start with, is 10 mg/kg. My doctor told me that in such low dosage no side effects arise. Of course, I have a low ferritin level so this low dosage can be justified.I do not think this is recommended for higher counts.
I really do not know what to recommend for Zainab. I surely do not like the ups and dows of her SGPT. I also do not like the continuous breaks, now and then, of her chelation due to exjade side effects. What about ferriprox? Why don't you ask your doctor about that?
I'll ask mine for Zainab too, next time I go to the hospital.

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on December 20, 2009, 12:47:17 PM: Lena,

Thanks for your reply :) Z was on ferriprox alone once,and those were the days she reached her highest ever ferritin,2400,so i never thought of going back on that,either we'll have to wait for exjade to get adjusted with her system or either its combination therapy of ferriprox and desferal,since her doctor is not ready to let her use desferal with exjade,last time when her ferritin showed a little decline,i was hopeful that exjade has adjusted by now,but this rise in SGPT has worried me a little again.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on December 20, 2009, 04:17:18 PM: Zaini,

the best therapy ever is combination therapy, especially the one that includes ferriprox as it is the only cardio-protective chelator. Please keep us informed after consulting your doctor.

Lena.
Title: Re: Wish us luck !!
Post by: Fadd on December 20, 2009, 08:17:52 PM: Dear Zaini

many of the children here in Fatimid Foundation started Asunra. their record was maintained and the doze was adminstered. even the doctor and my mama asked me to switch to Asunra, but i was afraid that starting Asunra may affect my university and studies if it were not suiting me. so i decided to stay on Ferriprox and Desferal. my ferritin last month was 1900.My fault, as i don;t comply with the advise due to the tough schedule and projects at university.
Now, recently my doctor told me that many of the children have switched back to Ferriprox as the Asunra didn;t suit them and also their ferritin wasn't under control.
the doctor here in Fatimid says that the "Golden therepy" is combination of Desferal and Ferriprox.
Desferal is hard to administer due to the needle prick, and i'm sure little Zainab won't like it, but if the SGPT levels are not going to get stable, you should consult with your doctor and switch back to Desferal or Ferriprox. (This is only my suggestion, the doctor can guide you well).

Best wishes for cutie Zainab

Fouad
Title: Re: Wish us luck !!
Post by: Andy Battaglia on December 20, 2009, 08:23:46 PM: I wonder why the kids have trouble with Asunra. I hope the doctors are starting them on low doses until their bodies get used to the drug.
Title: Re: Wish us luck !!
Post by: Manal on December 21, 2009, 02:52:07 AM: Zaini, i wish you can find the best and comfortable option for little Z, good luck my friend

manal
Title: Re: Wish us luck !!
Post by: Sharmin on December 21, 2009, 02:58:17 AM: Zaini,

I wish that lil z's sgpt would not rise. I also hope that ferriprox/exjade combination will be approved for more people soon.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on December 21, 2009, 09:08:01 AM: Thanks everyone :hugfriend

Lena,

I forgot to tell you that Z did start Asunra with low dose,she started it with 15 mg/kg,and in January her first year on Asunra will be complete,as for combination thearpy,i know its the best,but as we all know that desferal can hinder bone growth,and Z isn't very tall already,infact she has gained only 4 cms in her height in last year,she is 124 cms.I am not expecting her to be tall as i am only 5'2 and my husband is 5'6 or 5'7,but i'd like her to grow normally.

Fouad,

Thanks for your concern,I am just hoping that Asunra will work for her,coz she'd hate going back on desferal,and since her ferritin is not that out of control and is showing decline so i am hopeful that she won't have to switch back to desferal.

Andy,

Do you think i should give Z a break from Asunra for few days? She is already taking Nigella,anything else you think would help?

Sharmin and Manal thanks for your wishes :hugfriend .

Zaini. :hugfriend
Title: Re: Wish us luck !!
Post by: Keep Smiling on December 22, 2009, 04:51:46 AM: Lil Z i have a lot of prayers for u, Insha Allah everything will be fine soon!

Abbas
Title: Re: Wish us luck !!
Post by: Zaini on December 22, 2009, 06:00:20 AM: Thanks Abbas, :)

We are planning to recheck her SGPT on coming friday or saturday,we'll see what happens next.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on December 22, 2009, 06:05:15 AM: Zaini,

You can try giving her a few days off to see if it lowers the levels a bit. The SGPT (ALT) level is also affected by hemolysis, so it isn't automatically just the Exjade raising the level. Is there any possibility of her taking desferal a couple times per week along with Exjade until her ferritin gets down below 1000?

The Ferriprox/desferal combination should also be considered if Exjade proves unsuitable. There are many possible combinations using the two drugs. 5 days Ferriprox and two days desferal is one that many find easy to follow.
Title: Re: Wish us luck !!
Post by: Zaini on December 22, 2009, 06:25:59 AM: Andy,

Thanks for your reply,Last time when her levels were elevated,and they were somewhere in between 200 and 300,we stopped Asunra and the levels did come down below 100,after that it came down till 40 and then started rising again,first 80 and now 145.

I am ready to try two days desferal and 5 days Asunra,it would be more economical for us too,but her doctor is not ready to do that,sometimes i think about giving it a try with out her consent,but then i get confused should i do that ??? .

Zaini .
Title: Re: Wish us luck !!
Post by: Lena on December 22, 2009, 10:34:31 AM: Zaini,

I do not think Asurna is a good idea any more. If this raise happens to me - twice - after I start it, I will certainly drop the case.

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on December 23, 2009, 05:33:54 AM: Lena,

I know what you mean,i am just desperately hoping that the situation will get better,and i am thinking seriously about two days desferal and 5 days Asunra program,although Z's doctor may not allow it but i know other doctors here who are following this,and i know doing this with out her doctor's consent might aggravate her doctor,but desperate times call for desperate measures.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on December 23, 2009, 06:23:45 AM: Zaini,

I am sorry to insist on this - I know you don't want to leave Asurna and I fully understand your point of view - but I believe that even with 5 days of Asurna things will be the same.That is my personal opinion, of course. It is up to you and your doctor to find the best solution for Zainab.

I am curious though : why ferriprox is not a choice for you at all?

Hoping for the best,
Lena.
Title: Re: Wish us luck !!
Post by: Emby on December 23, 2009, 01:10:00 PM: Salaam Zaini,

Our youngest ALT shot up to 302 six years ago (6 years old then). His ferritin was also very high, 2781. We were told that it could be a viral thing and they would keep an eye on it. The 'viral thing' went on for three years before the reading for ALT began to decline. There was no investigation.
Now his ALT suddenly went up again. It was 20 last month but now is 132. He has been a bit
flu(ish) lately. His ferritin has gone up too from 517 - 608 - 839. Again we are told the same thing.
Our little ones blood intake has been increased because his pre tx Hb was dropping to below 9.0 and the ALT reading and ferritin has gone up from that exact time. Maybe it is because of this that his readings have gone up. I asked his Doc to put him on combi of desferal+ferriprox because he also has mild liver and heart iron and because of this but his Doc is insisting on keeping him on just ferriprox because Doc says the iron levels are not severe. We will wait to see what his readings are the next time and if no decline in levels then inshaAllah, i will push for combi.
I agree with Lena on combination of ferriprox and desferal...i too think this is a stronger more efficient form of treatment.

Luv,
Emby
Title: Re: Wish us luck !!
Post by: Andy Battaglia on December 23, 2009, 02:52:08 PM: An increase in ALT that corresponds with an increase in transfusion requirement would most likely be due to the hemolysis taking place that is destroying red blood cells, which is the reason behind the increased transfusion requirement. Most likely, this has nothing to do with the chelator in this case, whereas, with Zainab, I don't believe there has been any increase in transfusion requirement. This leaves Exjade as the most likely reason for the increase in ALT.

Emby, keep an eye on the ferritin readings. It is possible for ferritin to fluctuate without and increase in iron load, as all infections will raise the serum ferritin level, so Ferriprox alone may be enough, but if the level continues to increase, adding desferal a couple days a week will get the level back down. Every study has shown the Ferriprox/desferal combo to have the best chelation effect.
Title: Re: Wish us luck !!
Post by: Lena on December 23, 2009, 04:35:27 PM: Quote from: Emby on December 23, 2009, 01:10:00 PM
I asked his Doc to put him on combi of desferal+ferriprox because he also has mild liver and heart iron and because of this but his Doc is insisting on keeping him on just ferriprox because Doc says the iron levels are not severe.

Emby,

I really do not understand those doctors who say only ferriprox. I have been on ferriprox alone for one year, due to low ferritin level (45) and my next MRI showed a light increase on liver iron, due to my being only on ferriprox.
This is a clearcut thing: combination is far the best. Ferriprox is specialised on heart and desferal or exjade on liver. Cut and dry. Any doctor who does not understand this is a fool. And what's that about "mild liver and heart iron"? In our Unit most of us have T2* heart and liver 40. Do you know what 40 means? Perfectly clean heart and liver. 100%. Do you know what we do? Never abort our chelation therapy. Mostly combination therapy. Sorry, but it's getting on my nerves when doctors are a drawback on their patients' improvement.

As Andy said, please check up on next readings and act accordingly.

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on December 23, 2009, 05:15:25 PM: Lena,

As you said you understand why i am trying to cling to Asunra,when Z was on combi therapy of desferal and ferriprox,we did at least 5 days of desferal,and her ferritin level when she started Asunra was 1400,meaning combi therapy definitely worked for her,but i am just not sure if only two days desferal would work,if we start combination therapy again,i guess we'll have to go back on five days a week again.

Emby thanks for your input :hugfriend Z did have flu in last few weeks,i am not sure whats causing this raise in numbers.

Andy,

I am sorry but i didn't mention that Z's last two transfusions were on three weeks rather then four weeks,which is her ususal routine,as far as i remember first time it was because of fever and and next we took three weeks appointment to cover it,and before the recent transfusion on 12th december,her pre tx hb was 9.8,so we took 4 weeks appointment this time,but her last two transfusions had a little less interval then usual.

We'll recheck her SGPT and if its low we might give Asunra one more shot,or may be not,i am not very clear on that right now,thanks for every post guys :hugfriend .

Zaini,
Title: Re: Wish us luck !!
Post by: Lena on December 23, 2009, 05:27:01 PM: Zaini,

I agree with you - with ferritin above 1000 two days of desferal are not enough. Of course, the four weeks' transfusion interval is a very good thing as Z is not getting so much blood. I am sure you will find the best solution for Z.

Lena.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on December 23, 2009, 05:52:26 PM: Zaini,

The increased transfusion regimen could raise the SGPT level if it is because of hemolysis. This is common and may have to do with the particular batches of blood not lasting quite as long as usual. I wouldn't be too concerned at this point, unless it continues.
Title: Re: Wish us luck !!
Post by: Zaini on December 23, 2009, 06:27:33 PM: Thanks Lena and Andy, :hugfriend

I don't know why,may be i am assuming but i feel like her reading will be low in recheck,as the same happened last time,may be i am just hopeful :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on December 23, 2009, 11:54:54 PM: I hope the same Zaini :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on December 24, 2009, 04:32:25 AM: Thanks Manal :hugfriend Everyone please remember us in your prayers :yes .

Zaini.
Title: Re: Wish us luck !!
Post by: Fadd on December 28, 2009, 06:07:29 PM: Did you check on Zainab's SGPT count this Saturday or Friday?
I pray that you come up with a good news.

Fouad
Title: Re: Wish us luck !!
Post by: Sharmin on December 29, 2009, 12:35:36 AM: Hi Zaini,

Waiting to hear about lil Z's results - praying that they will all be good.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on December 29, 2009, 06:27:19 AM: Thanks Fouad and Sharmin :hugfriend

Z just left for the lab,hopefully her SGPT will be down this time Inshallah :pray .

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on December 29, 2009, 09:28:16 AM: i have the same wish. I keep my fingers crossed! :hugfriend
Title: Re: Wish us luck !!
Post by: Keep Smiling on December 29, 2009, 12:47:26 PM: Insha Allah, numbers will be low..........
waiting for update..

Abbas
Title: Re: Wish us luck !!
Post by: Fadd on December 29, 2009, 03:10:10 PM: Gee Inshallah...

Fouad
Title: Re: Wish us luck !!
Post by: Sharmin on December 29, 2009, 05:03:43 PM: Hoping for the best Zaini,

Sharmin
Title: Re: Wish us luck !!
Post by: Manal on December 29, 2009, 10:41:38 PM: Good luck Zaini :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on December 30, 2009, 05:40:32 AM: Thanks everyone :grouphug

I got a call from Lab today and they told that we'll have to give blood sample again for the test as the sample they have has hemolysed :mad so now we'll have to go to lab again tomorrow morning and wait another day :hysterical .

Thanks for all your wishes,we do need them. :yes

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on December 31, 2009, 08:09:53 AM: Hi Guys,

So the test was done in the morning and the reading came back "32" :hi5girls i haven't checked it with her doctor yet,but i assume we'll be allowed to start Aunra again,i am hoping that this raise was temporary and it won't happen again.

Thanks for all your wishes friends :grouphug .

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on December 31, 2009, 08:12:08 AM: Glad to hear that,Zaini. I hope there will be no more obstacles to Z's chelation now.

Lena.
Title: Re: Wish us luck !!
Post by: nice friend on December 31, 2009, 08:41:40 AM: Zaini Sis ,
glad to hear the results , wishing all the luck to lil-z for her future :) ...

Best Regards
Take Care
Umair
Title: Re: Wish us luck !!
Post by: Keep Smiling on December 31, 2009, 09:47:55 AM: i m really happy to know the results,,,,
Best of luck lil Zaini

Abbas
Title: Re: Wish us luck !!
Post by: Fadd on December 31, 2009, 06:38:02 PM: That's really great to hear... :)

Fouad
Title: Re: Wish us luck !!
Post by: Zaini on January 01, 2010, 08:39:47 AM: Thanks everyone :grouphug

She has resumed Asunra,Hopefully i won't be writing about elevated SGPT anymore inshallah .

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on January 01, 2010, 01:16:52 PM: The new year is bringing good news Zaini, so happy for you :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on January 01, 2010, 05:10:59 PM: Thanks Manal :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: nice friend on January 02, 2010, 06:23:05 PM: AOA Zaini Sis ,
Best of luck to u n lil-Z .... :goodluck

Best regards
Take cAre
Umair
Title: Re: Wish us luck !!
Post by: Sharmin on January 03, 2010, 08:49:50 AM: Zaini,

I am very glad to hear that! I hope that her SGPT will remain low and her ferritin will also begin to drop. Remember, her actual iron stores are definitely decreasing, whether you can see it reflected in SF or not. That is something we have noticed with Lil A with all of his tests.

Best best wishes in the New Year to you and to lil Z,

Love,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on January 03, 2010, 04:39:09 PM: Thank you so much Sharmin,

I hope you guys are enjoying holidays :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Zaini on February 01, 2010, 05:42:59 PM: Hi Everyone,

A little update on Z's ferritin level.last time checked in October it was 1261 and now its 1133,its dropping painfully slow :( and its been a year she started Asunra,her SGPT is a bit high then normal range,i am hoping that splitting of dose might giver her round the clock chelation and will bring her ferritin down faster.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on February 01, 2010, 06:05:48 PM: What did you say about ferriprox, Zaini? Why couldn't Z take it?

Lena.
Title: Re: Wish us luck !!
Post by: Manal on February 02, 2010, 12:29:57 AM: Hope it will be better Zaini by next time, be patient my friend :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Sharmin on February 02, 2010, 01:48:44 AM: Zaini,

I think that lil Z is on a maintenance dose and that is why he ferritin is remaining constant. I am still glad that it has not risen, I also believe that the exjade is removing iron from her organs and tissue. I wish that she could be on a higher dose for a little while - but her SGPT values have been a little bit of a concern. I also wish that you docs would allow combination for a while.

What Lena is doing - exjade/L1 combination will be a great thing once more widely acceptable.

Sending best wishes,

Sharmin
Title: Re: Wish us luck !!
Post by: Bostonian_04 on February 02, 2010, 04:51:27 PM: Hi Zaini,
Good to hear about low SGPT for Little Z. Ferritin of 1133 is still pretty good for a growing kid. You are doing great job controlling Little Z's ferritin.
Title: Re: Wish us luck !!
Post by: Sharmin on February 02, 2010, 06:53:16 PM: Zaini,

I am thinking that splitting her dose will have two benefits, it will lower her ferritin and decrease her SGPT value because she is getting smaller doses.

Best of luck,

Sharmin
Title: Re: Wish us luck !!
Post by: Canadian_Family on February 03, 2010, 12:33:49 AM: If I can add my two cents. Splitting the dose can be beneficial in little Z's case. The ferritin level is pretty good for little Miss Z, its not bad at all. Do not be alarmed unnecessariy. I think at this point, all of us are in trial and error situation to achieve our goals.

As discussed in another thread, little miss A is going to split the exjade as well and we are hoping that would resolve her nausea problem.

Stick together :biggrin
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 03, 2010, 02:47:20 AM: This is how it has worked with every chelator. It is the patients and parents who discover the best chelation techniques. Novartis planted the idea of once daily dosing in patients by asking them if they would like a once daily chelator. Of course everyone will say yes, but the reality in actual use, is that reducing the side effects and making the drug more tolerable overall by splitting the dose is becoming more important than once daily chelation. With the speed of the internet at work, new ideas in managing chelation spread rapidly, just as we've seen by our advising patients to start on low doses of Exjade and Ferriprox when first starting the drug. Most doctors now know to recommend this and this has been accomplished largely through parents and patients bringing this to the attention of the doctors. I think we will quickly see this same phenomenon with this bit of advice about Exjade.
Title: Re: Wish us luck !!
Post by: Sharmin on February 03, 2010, 06:19:45 AM: You are right Andy, Oakland is advocating splitting of the dose now. They have advised us to do so with lil A's exjade.

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on February 03, 2010, 11:07:33 AM: Thanks so much for your input everyone :)

Bostonian,thanks for your kind words,sometimes we really do need them :hugfriend its good to hear that you guys think that Z's ferritin is not alarming,and yes we will be splitting the dose from tomorrow if i get the medicine today,Novartis said they are short of 100 mg boxes,and today i have her last dose,hopefully i'll get it by tomorrow.

I am also seriously considering combination with desferal,but the thing is,the doctor who is allowing his patients to do that,i am not sure if he'll let us do that because of Z's ferritin levels,coz they usually see kids with thousands of ferritin level,but still as Z gets a break from school i am planning on visiting him,as i don't wanna do it without doctor's supervision.

Can anyone plz give me a link to kid's growth chart,for south asian kids? I can't seem to find it and the ones i found i couldn't understand.Z is 127 cms tall and weighs 27 kg.

Thanks :grouphug

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on February 03, 2010, 04:45:20 PM: Zaini,

You are right to consider combination with desferal, not to mention desferal alone- in this phase.
From my experience, when ferritin does not go down and insists somewhere around 1000, next step is to proceed with something more aggressive- desferal. The only question is Z's age--then again so many young thals have grown up using desferal and of course Little Z will be on it just for a while.
My estimate is that Z's ferritin will not come down at least considerably and if it does it will delay in doing so. That's what I think. Sorry if I disappoint you, but truth must be told and right steps must be taken. I have heard of a case with ferritin 1500 (on ferriprox-exjade combination therapy) and she was removed fron that chelation therapy back to ferriprox-desferal - for a while to manage a drop in ferritin and then again back to exjade....

Zaini,

Do what you feel is best--I only suggest things in this site out of my experience and according to my personal opinion, trying to help to the best of my ability.

Also inform your doctor that ferritin optimal levels have been brought down to 100... Why don't you show him/her info from this site? Will be offended,eh?But doctors must not inhibit our health evolution because of their ignorance, must they?

Lena.
Title: Re: Wish us luck !!
Post by: Dori on February 03, 2010, 05:57:24 PM: I typed a whole bunch and then it was gone. So meet you all in the weekend.
Good luck and happy days!!!
Title: Re: Wish us luck !!
Post by: Zaini on February 03, 2010, 06:09:57 PM: Lena,

You never disappoint me :) i know you are telling the truth and yes,if that doctor doesn't allow Z to use Asunra and desferal together,i might go back to desferal and ferriprox again,painful it may be but if its necessary,we don't have much choice.

Regarding the doctor,i once tried to show her content from this site but she didn't consider it much,but i have high hopes for this other doctor,i am just waiting for Z to get free from school,she'll get a break for a week or so in february i guess,and thats only because she bites my head off if i make her miss school to go to doctor,so considering that its not an emergency,i am not pushing her.

One more thing why i am a bit hesitant in going back,Z is growing up and now unfortunately she has started arguing and questioning about all the medication or supplements she has to take,she'll literally hate going back on desferal,thats why i was hoping so much that Asunra would work,but if not,don't worry i am not giving up,i'll have to convince her anyway,it just makes me feel bad that i always keep convincing people to take supplements and i didn't know that my own daughter was resenting taking them.Go figure ..

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on February 03, 2010, 06:24:34 PM: Thanks for your vote of confidence, Zaini.

I would suggest that you persuade little Z that she has to switch back on ferriprox-desferal and that it will be only for a while- just temporary - until she manages to lower her ferritin. The reward will be to continue with exjade. She may accept it this way. I fully understand what you have said about children stating their own opinions and standing up to their feet.

Lena.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 04, 2010, 04:43:27 AM: Zaini,

I do think that before considering a change of chelators, that you should give the split dose twice daily a chance, before trying other chelators again. She may make a bit more progress because she has a better chance of covering a full 24 hours with chelation. Exjade is not metabolized at the same rate by all patients and for some, a daily dose isn't giving the 24 hour chelation that is intended. Don't forget that one dose of Exjade is supposed to give 24 hour chelation, but this is equal to no more than the chelation provided by 12 hours of desferal. At its best, Exjade has been found to be equivalent to desferal. What this means is that any patient who isn't getting a full 24 hours chelation from Exjade, is also not getting the same chelation they would from daily desferal use. I think this realization has had a big impact in this recent revising of the dosing recommendations that doctors are giving. Hopefully, the result will be less nausea, potentially less effect on liver levels and a true 24/7 chelation regimen.

Little Z is only on a maintenance dose of Asunra so you can't expect much decrease in ferritin, but the slow drop may accelerate a bit if she has full time chelation with the split dose. Another consideration to be made is that since she is an intermedia, she should be taking less annual blood volume than a major, so a full dose of Asunra may not be needed, especially if she continues to make progress, even if slowly. If splitting the dose has a positive effect on her liver levels then bumping the dose another 5 mg/kg per day might be possible. I don't think this trial should drag on too long, but if you try the split dose and see improvement, it will be worth it to continue.
Title: Re: Wish us luck !!
Post by: Zaini on February 04, 2010, 07:22:07 AM: Lena,

You are right,i would have to do that once i give split dose a try.

Andy,

You are right,i am aware that Z is not on her full dose,which would be 800 mg,she is on 600 mg basically because of her liver levels being unstable,so i am also hoping that splitting the dose might help us,regarding blood volume,i don't exactly know how much blood she is taking annually,but she is transfused 450 ml in every transfusion,and sometimes she goes on third week and sometimes on fourth,sometimes i do think about giving hydrea a try,with transfusions,but i am just afraid it would add more tablets to her schedule and more side effects to keep an eye on.

Thanks for your input,i'll check her records and will let you know how much blood she got in last year.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on February 04, 2010, 11:11:47 AM: I try to put myself in Zainab's shoes and imagine what it is for a young thal to have to deal with a chelation scheme necessary in order to continue his/her life. You see, when I was young, chelation did not exist and I found out all about it when I was 15. That means all my life as a child was spent without having in mind I had to have desferal or ferriprox or exjade and which combination to follow.
Of course, I was lucky to survive, for I had reached the turning point and I hadn't realised that at all.
Nevertheless, up to that point I had to deal with my transfusion dates only and that gave me a bit of a rest.
In spite of having that rest however, if I had to choose between less chelation concern and being chelated from a smaller age, I would have chosen the second.
What I am really trying to say, is that I am jealous of all young thals as they start their lives with every possible medical help and every possible wide variety of their chelation medicines. And an access to gene therapy.

So, you have to choose and decide and this must make you thankful and optimistic.
Read, be aware of the new developments and choose and do not doubt that life will be fruitful despite the difficulties.

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on February 04, 2010, 12:28:28 PM: Lena,

Thats what i told Z,that you are fortunate enough to have these things in ur life,not every one can afford these medicines and supplements,even some parents can't afford transfusing,they go to charity hospital where transfusion depends on availability of blood.And you are living a normal life despite of what you have,Allah Almighty has saved you from any complications,(God Forbid) and i have seen kids with terminal illnesses,the other day i was visiting the website of Make a wish Foundation Pakistan chapter,and i saw a pic of a boy who was in last stages of cancer,next time when we go to hospital,i'll make her meet cancer patients,if they are there on that day,i hope she'll understand the difference between why she has to take these meds or supplements and why they have to.

May be she is a bit young to understand this comparison,but i want her to be strong and confident,from right now when she is just a kid,so that she won't take people's worthless pity to heart when she grows up,and when she grows up she'll be a strong and confident person,who would take thalassemia as a part of life,and not life itself.She'll realize that these meds and supplements are friends and helpers,not obstacles or hindrances in life.

Andy,

I just check her records,she was transfused 14 times last year in 2009,and every time the quantity was 450 ml,is that ok or is that too much?

Zaini.

P.S She took her first half dose today.
Title: Re: Wish us luck !!
Post by: Sharmin on February 04, 2010, 04:26:14 PM: Hi Zaini,

I think that both lil Z and lil A are going through this phase. I wish we could sit them both together and talk to them! I am realizing something though. All of these years I have been very matter of fact with lil A - my attitude has been "it is what it is - here are your pills - lets get on with your day".

Suddenly, in recent months - especially after having the parasite issue - he began complaining about all of the disgusting and unpleasant medications and supplements he has had to take. At first I took the too bad, you are fortunate approach but I realized that he just needed to express that the situation "sucks". He just needed me to acknowledge it - when I failed to, he said one day - "yes mom I AM grateful! I never said that I wasn't - but all of the meds and pills make me want to throw up all of the time - somedays it is just too much - I am not complaining for no reason. Caroa is too gross to even smell and I have had to take it. Exjade tastes like chalk dissolved in water and I take it. The pills are hard to swallow and make me sick for hours after but I take them - the needles and IVs have hurt but I take them - can't you just agree with me that it sucks sometimes?" "I know I am better off than others, I am glad that I can run and play and be smart - but this STILL sucks - and I wish you would stop pretending that it doesn't. It could be worse - but at least admit it is hard on me!"

This opened my eyes. I do have to understand that most of the time I have to act matter of fact, but when he needs to say this I should let him. I need to let him vent and feel understood. I shouldn't make him feel guilty when he doesn't feel strong or when he doesn't take these meds with a smile on his face. I should listen, understand and gently nudge him back in the right direction.

I hope that this makes sense, I have learned it from lil A recently and I am still in the process of understanding. He didn't mind IVs and needles as much as he minds ingesting so many things.

Sharmin
Title: Re: Wish us luck !!
Post by: T @ r ! Q on February 04, 2010, 07:19:01 PM: Lena,

Quote from: Lena on February 04, 2010, 11:11:47 AM
What I am really trying to say, is that I am jealous of all young thals as they start their lives with every possible medical help and every possible wide variety of their chelation medicines.

Totally agree. I myself started proper DFO chelation at the age of 15 and oral chelation just 4 years ago. Things would have been completely different if I started it all at the initial age.
Title: Re: Wish us luck !!
Post by: Zaini on February 05, 2010, 05:53:50 PM: Sharmin,

You are totally right as always :yes

Tariq and Lena,

I know,i can understand what you guys must have missed,i had a cousin who succumbed to thalassemia at age of 20 or 22 in 1985 or 86,coz chelation wasn't available commonly at that time,i totally agree with you guys,we have started splitting dose,she is taking 300 mg in the morning and 300 mg in evening,lets hope for the best Inshallah.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on February 05, 2010, 06:08:28 PM: Things will work better, Zaini.
And if not, God forbid,you have other paths to follow. Do not worry.

Lena.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 05, 2010, 08:52:29 PM: Zaini,

I really hope that splitting the dose helps. I am sure Zainab would like to give Asunra as much chance as possible to work for her. I think from the psychological perspective, this is best for her. If it still causes problems, she will know it's not the drug for her, but without trying the split dose, it would always leave a question in her mind.

Lena,

You're one of the survivors from your generation and your own strength of will is a big reason why you are here today to share your experience. I so wish that oral chelators had been available all along to you and those from your generation. I think many more would still be with us if this opportunity had existed. One question I have for you. I have seen this with some long term desferal users. The pump can become something of a crutch that isn't always easy to give up. Did you have any problem putting your pump away once you stopped using it?

Sharmin,

Thank you for a beautiful post and some perspective into the minds of the young. I think all too often we see the world through our own eyes and never understand the little things that can make life so much more bearable for our children. Just showing your child you can see things as he or she sees them can help to forge bonds that will last forever.
Title: Re: Wish us luck !!
Post by: Lena on February 06, 2010, 04:38:26 PM: Andy,

No problem at all, none whatsoever. In fact, although the pump has never been a special burden for me, there came a day- out of the blue - that I decided to make a turn with my chelation. I decided I wanted to stop the pump, stop the needles and improve my quality of life. Even if exjade does not work, I think I'll stick to Ferriprox - and that's that. I do not suggest, of course, that every thal should skip desferal like this - my last count showed my ferritin was 103. So, to answer your question Andy, although the pump did not make me considerably suffer I happily parted with it after 30 years.I parted it,though. I have not put it away, I haven't locked it in a drawer but I keep my fingers crossed that I will not use it ever again.And I know many friends of mine who do that, too.

Lena.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on February 06, 2010, 06:47:18 PM: Lena,

Your attitude towards stopping the pump is what I expected when people first switched to Exjade, but I was surprised at how many people had a psychological in addition to physical dependency to their pumps, as the one thing in life they identified with having the ability to keep them alive.

These little psychological issues people have to deal with should always be recognized by those who wish to truly empathize with those who are living with thal. On the other hand, I think most patients have greatly enjoyed the freedom from the pump, and when an oral chelator does not work out for a patient, and it requires a return to the pump, there is a new set of psychological issues that needs to be taken into account, as it can be a depressing notion to think about returning to the needle. Because of this, among other reasons like better compliance, I do not think oral chelation should be quickly abandoned at the first sign of trouble, as has usually been the case with Ferriprox and we are now also seeing to some extent, with Exjade. Temporarily ceasing the drug and/or developing a new program for taking the drug, such as dose splitting, should always be tried before ceasing the drug altogether.
Title: Re: Wish us luck !!
Post by: Lena on February 07, 2010, 08:00:03 AM: Andy,

I forgot to tell that I have "suffered" this return to the pump after one year's monotherapy with Ferriprox. Well, it didn't make a difference to me back then -2 years ago- and I used the pump regarding it to be a tool for better chelation. However, as my heart is clean, desferal becomes toxic (I have mentioned this in another thread) and makes me have heart palpitations(about 90-100 pulses which last for one hour after the end of the pump) which I do not experience when in oral chelators. This was one reason for me to start thinking of dropping the pump - along with the life quality improvement, of course, and now I find myself more decisive to drop the pump completely.

I agree that there is a psychological attachment to it, but not by the general thal population.
There is a slight depression to thals - that, I have noticed - when pump comes back into their lives.
But this is a great possibility, isn't it? Thals must keep in mind that their chelators count three(desferal-ferriprox-exjade). Not two. They must play with them and switch from one to the other, depending on each case. If they keep that in mind, they will be more ready to face any unhappy development.

I also agree about not abandoning the drug altogether with the first sign of side effect. Although I have noticed that thals who react to the drug from the beginning they will keep on reacting to it, second, third time, and they finally drop the case and switch to another chelator. I have seen this happening with Ferriprox, and now with exjade. Surely one must stick to it for a while remaking the chelation scheme but it rarely helps.

Lena.
Title: Re: Wish us luck !!
Post by: Madhavi on February 07, 2010, 04:13:24 PM: Was just reading all that has been posted here...
Zaini...I dont know if I have even a fraction of experience or knowledge as has already been put here to be able to advise you...
I can only hope that whatever decision you make is medically correct and is apt for Lil Z!
I can understand how tough it will be to answer her questions...but you will find the answers within you or with great friends like Sharmin here!
I am amazed again at how much strength and wisdom you all parents have!
All the best.....
Madhavi
Title: Re: Wish us luck !!
Post by: Zaini on February 10, 2010, 04:32:57 PM: Thank you so much everyone, :hugfriend

Andy,

Of course she wants to give every chance to Asunra,and i know she'll understand if she had to go back,but it'll hurt me more then it'll hurt her,i remember when she was on desferal she often complained she couldn't sleep well.

Its been only 5 days she started split dose,but the immediate difference i have noticed is that her stomach ache is reduced by 50%,and thats a good sign i guess,i am praying her SGPT will be down and we'll be able to increase her dose.

Keep her in your prayers :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Fadd on February 10, 2010, 06:37:32 PM: Dear Zaini,
Every thing will turn out to be fine Inshallah, and reduction in stomach ache of Little Z is the step one towards it. :)

Fouad
Title: Re: Wish us luck !!
Post by: Dori on February 10, 2010, 07:52:23 PM: Off topic: Lena, your writings are always helping me. You are very close to my heart and you are so smart and like an eye opener for me. Thank you :hugfriend
[It's not my best English, but I hope you understand what I meant to say]
Title: Re: Wish us luck !!
Post by: Manal on February 11, 2010, 12:29:25 AM: I agree with Dore too :happyyes :happyyes
:agree

Zaini
Prayiny for our little sweatie, keep updating my friend

manal
Title: Re: Wish us luck !!
Post by: Lena on February 11, 2010, 07:33:55 AM: Dori,

I am touched by your opinion and I am so happy if I have helped you in any way. Your English is absolutely understood-not to worry.

Manal,

You are one of the most caring people I have met--not only to your family but to others,too.

Glad to have met you both.

Lena.
Title: Re: Wish us luck !!
Post by: Sharmin on February 11, 2010, 02:20:14 PM: Lena,

Somedays I wish that we could program all thal children to have your strength and attitude - what a difference it would make to everyone. I read your posts very carefully to learn how you think so that I can instill the same in my son. I would love for him to talk to you someday, I would want him to hang on to every word.

I look at all adult thals, who did not have the privileges that our little ones have, with such admiration. You have paved the way back when all odds were against you. The younger thals just have to follow in your footsteps with the odds stacked up in their favor. These young people should be looking at you thinking, if they did it under their circumstances - we can certainly do it with all that we have.

I really hope that you choose to write a book about your experiences someday Lena, the inspiration you would give everyone would be incredible.

Sharmin
Title: Re: Wish us luck !!
Post by: Lena on February 11, 2010, 05:14:45 PM: What can I say? I thank you all for your vote of confidence! Realy! When I started writing in this site I could never have expected something like this. I do not know about writing a book Sharmin, all I know is that I am willing to anwer whatever you want to ask me about or ever talk to you or your little ones,
any time.

Thanks again - all of you! :hugfriend

Lena.
Title: Re: Wish us luck !!
Post by: Manal on February 12, 2010, 02:41:27 AM: Quote
I really hope that you choose to write a book about your experiences someday Lena, the inspiration you would give everyone would be incredible.

What a brilliant idea Sharmin, please Lena give it another thought..you would do great

Manal
Title: Re: Wish us luck !!
Post by: mohamed on February 12, 2010, 09:37:48 PM: i agree too... :agree
Title: Re: Wish us luck !!
Post by: Zaini on April 19, 2010, 04:24:29 AM: Hi Guys,

Its been over a month i posted in this thread,as you all know that Z was having trouble with her elevated SGPT levels,and on Andy's advice i started giving her split dose of Asunra,that is 300 mg in morning and 300 mg in evening,her dose was already low because of her SGPT levels,in March when we gave blood sample for SGPT,somehow it got lost and we never got the result,last saturday Z went for transfusion and we gave sample for SGPT and guess whats the reading ?? 23 !! :biggrin its normal Alhumdulillah,so dose splitting does work :biggrin And we were able to resolve this problem just because of this wonderful forum :hugfriend not a single doctor ever told me to split the dose to help her SGPT levels,all every doctor said was stop Asunra for a while or may be you'll have to go back to pump :dunno .But thanks to this forum i am sure Z will do fine with Asunra InshAllah .

Andy,

I am thinking about increasing her dose now to 700 mg,but i'll give it to her on alternative days just to be on the safe side untill we get next reading of SGPT,What do you think ?

Zaini.
Title: Re: Wish us luck !!
Post by: maha on April 19, 2010, 05:58:56 AM: Hi Zaini
Alhumdulillah really happy for you and Z. By the way does your doc know you have been splitting Z`s dose, if not you should inform them so that many more children benifit from this. How`s her ferritin behaving? I too wanted to split Hassan`s dose just to see its effect on his ferritin but whatever 100mg boxes novartis had was reaching expiry in july. Did you get the 100mg boxes easily?In my hometown I had to request novartis for 100mg boxes and still waiting to get it till then I have enough boxes (400mg and 100mg) to last me till july.

maha
Title: Re: Wish us luck !!
Post by: Manal on April 19, 2010, 06:06:43 AM: Wonderful news Zaini, :biggrin :biggrin I hope many can benefit from this important tip. Moniter the frequency of ferritin decrease so you can know if the splitting the dose has bettter effect on ferritin or not

So happy for you my friend, i know how you were afraid that you might go back to desferal again , but thanks God :hugfriend :hugfriend
manal
Title: Re: Wish us luck !!
Post by: Zaini on April 19, 2010, 06:09:34 AM: Maha,

Thank you so much :hugfriend her ferritin has stayed the same as her dose was maintainance dose rather then chelating dose,and we were unable to increase her dose because of elevated SGPT levels,her ferritin is 1185.But i am hoping once we increase her dose it will come down,Her doctor doesn't know yet that she is on split dose,i will tell her in my next visit,i was waiting to see what result we get from this.We never had any problem in getting 100 mg boxes,in fact i remember i told Novartis delivery person that we need 100 mg boxes because we wanna split the dose because of elevated SGPT levels and he never objected.

Kisses for Hassan :hugfriend

Manal,

Thanks a lot dear friend,i am Thankful that it worked,ferritin as of now is same because of low dose,but once we increase her dose i am sure we'll see a drop InshAllah :yes .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on April 19, 2010, 06:12:53 PM: Zaini,

I am glad that her SGPT levels are in the normal range now. Once again the advise we have gained here has been most helpful. I hope that lil Z's ferritin levels decrease significantly soon. Do you find that she gets a tummy ache from the exjade? Lil A complains of tummy problems due to exjade, especially first thing in the morning. Does it get better when you split the dose?

Please give my love to my lil Z :hugfriend :hugfriend

Sharmin
Title: Re: Wish us luck !!
Post by: Andy Battaglia on April 19, 2010, 10:48:37 PM: I want to add that splitting the dose will ensure 24 hour chelation, which is something that is not happening with most patients who take Exjade just once daily. Actual use has not shown the 24 hour coverage that was hoped for in many patients.
Title: Re: Wish us luck !!
Post by: Zaini on April 20, 2010, 04:07:37 AM: Sharmin,

Thanks a lot :hugfriend Tummy ache does get better after splitting the dose,it doesn't totally vanish,but it gets better and less frequent.I have increased her dose to 700 mg on alternate days,we'll see whats her next SGPT is and then increase the dose permanently.

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on April 20, 2010, 06:21:04 PM: Zaini,

I just wanted to get back to you. I haven't been well and get behind at times. Yes, alternating doses is an accepted method for ensuring the proper dosing is achieved.
Title: Re: Wish us luck !!
Post by: Zaini on April 21, 2010, 04:15:54 AM: Thanks Andy,

Be well and take your time :) i hope the increase in dosage will bring her ferritin down.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on May 16, 2010, 09:25:10 PM: As for splitting the dose. I have done that and I am glad to tell you that I am back on 1500mg. I have not read all post since I am very tired and in pain (study means pc thse days) I am a bit (and more) frustrated that with 1000-1500mg over the last 6 months my ferritin remains stable around 600. Yes, everyone tells me it is good. And, yes I know I have dreamt about such levels for a long time, but I do not want to be stuck for 6 months.

Owh, Zaini you talk about alternative days. Could you tell me more about that? How looks little Z's scheme of Exjade?

Dore
PS this means I take again 40mg/kg
Title: Re: Wish us luck !!
Post by: Zaini on May 17, 2010, 04:16:28 AM: Hi Dore,

We give Lil Z 700 mg on one day and then 600 mg on the next day,in split doses of course,after 3 weeks of following this pattern her SGPT came back 31,which is a lil bit higher then last time,when it was 23,but its still in range,so we will follow the same pattern for another four weeks and then after checking her SGPT,we'll decide if she can take 700 mg on daily basis.

Her ferritin is 1168,i am not happy with these numbers,but i have to be patient ,no other choice,i shared my concern over her ferritin last time with her doctor and he said "on 1100 you should be celebrating,i am more worried about kids who have ferritin of 5-6000".

Well i won't be happy until she reaches 500.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on May 17, 2010, 04:56:57 AM: Zaini,

anyone should look at the best and not at the worst, let alone doctors(although I understand his/her concern).

Lena.
Title: Re: Wish us luck !!
Post by: Zaini on May 17, 2010, 07:28:53 AM: You are totally right Lena .
Title: Re: Wish us luck !!
Post by: Zaini on August 13, 2010, 10:09:27 AM: Hi Friends,

An update here,and a good one too :) Z's ferritin is now below 1000 finally :) Very slightly though,its 918,but i am taking this as a good sign,along with SGPT which last time was 22,she is taking 700 mg Asunra right now,and i guess its doing something,coz her last ferritin reading was 1168,i hope our patience with Asunra is finally paying off.

And one more thing,we couldn't have done it with out your support and Andy's guidance :hugfriend.

Zaini.
Title: Re: Wish us luck !!
Post by: Lena on August 13, 2010, 04:38:19 PM: Glad to hear that, Zaini. 918 is pretty good and of course, the lower the better.

I have concluded - and apply this to myself - that 200 must be the limit. I think this must be the highest "maintenance ferritin level" and once you have brought it down, your effort must be to keep it up to 200. Of course, this is only my personal conclusion of what is a safe enough ferritin level...

Lena.
Title: Re: Wish us luck !!
Post by: Sharmin on August 13, 2010, 04:55:28 PM: Zaini,

I am so glad to hear that!! Prior to hearing this news I was going to suggest that you discuss exjade/desferal combination with your doctor - as many patients here are now on the combination with great results.

In lil z's case - it seems like things are going very well:)

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on August 14, 2010, 08:15:32 AM: Thanks Lena and Sharmin, :hugfriend

Lena,

I agree with you,i hope Z will reach that mark soon,we know that Lil A is around 500,i am curious if any other kid is around 200.

Zaini.
Title: Re: Wish us luck !!
Post by: Bostonian_04 on August 19, 2010, 02:10:11 PM: Great news Zaini....Now little E's ferritin is around 500. In Boston, when One of the kids ferritin went below 400, the heamo lowered exjade dose. he didnot want the ferritin to go to low. Do not if it has anything to do with other minerals getting chelated.
Title: Re: Wish us luck !!
Post by: Zaini on August 20, 2010, 09:19:54 AM: Bostonian,

Great news for Lil E,looks like Z has a hard competition :) I am so happy for Lil E :hugfriend Z is on 700 mg right now.

Zaini.
Title: Re: Wish us luck !!
Post by: Manal on August 20, 2010, 01:59:01 PM: congratulation Zaini, so happy for both of you :hugfriend
manal
Title: Re: Wish us luck !!
Post by: Zaini on August 21, 2010, 10:33:47 AM: Thanks Manal :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on September 23, 2010, 03:48:31 PM: Congratulations to little Z, Litte E and Litte A!!! :high5
Title: Re: Wish us luck !!
Post by: Sharmin on September 25, 2010, 01:40:21 AM: Remember also that ferritin readings can be wrong. Little A's ferritin readings were much higher than his SQUID or T2*. For example, at one time his ferritin was 1300, 1800 on two readings while his SQUID was only 700. Chances are lil Z's actual iron is much lower than her ferritin. Lil A is currently on 750mg of EXJADE - he weighs about 30 kg.
Title: Re: Wish us luck !!
Post by: Zaini on September 27, 2010, 01:19:29 PM: Lil Z has started taking 700-800 mg Asunra on alternate days,and her SGPT this month was 29,so far so good :) .
Title: Re: Wish us luck !!
Post by: Manal on September 27, 2010, 10:36:07 PM: Inshallah everything will go the way you want it Zaini :hugfriend

manal
Title: Re: Wish us luck !!
Post by: Zaini on September 28, 2010, 11:59:46 AM: Thanks Manal,InshAllah :) .

Zaini.
Title: Re: Wish us luck !!
Post by: Madhavi on September 28, 2010, 02:43:47 PM: All the best to Lil Z!
A long way to go but she has such a wonderful mom who in turn has such lovely support here at thalpal...you will succeed for sure!
Love,
Madhavi
Title: Re: Wish us luck !!
Post by: Zaini on September 28, 2010, 07:06:08 PM: Thanks Madhavi,

Couldn't do it with out you all :hugfriend

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on September 29, 2010, 01:17:09 AM: I hope lil Z's SGPT remains in a good range and that her iron levels continue to drop. I have a good feeling if you did a SQUID or MRI you would find that her iron levels are around 500-600.

You're doing a great job my friend,

Sharmin
Title: Re: Wish us luck !!
Post by: Zaini on October 16, 2010, 05:14:21 PM: Hi Sharmin,

I am sorry i missed this post somehow,thanks a lot my friend :hugfriend .

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on October 17, 2010, 06:22:26 PM: :) :hugfriend
Title: Re: Wish us luck !!
Post by: Zaini on January 04, 2011, 12:03:40 PM: Hi Everyone,

Here is an update on Lil Z's ferritin,checked on 31st December it came back 727,in August it was 918,its decreasing slowly,she is taking 800 mg of Asunra daily,400 in the morning and 400 in the evening,the question is should i decrease her dose or not? I haven't asked her hemo because i am sure she'll ask me to lower the dose,but i need an opinion from you guys first,what do you guys think? Her weight is around 29-30 kg .

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on January 04, 2011, 01:54:15 PM: Congratulations!
Why do you want to lower it?
Title: Re: Wish us luck !!
Post by: Zaini on January 04, 2011, 04:08:35 PM: Thanks Dore,

I don't want to lower it just wanted to know that with ferritin going down should the dose be lowered ?

Zaini.
Title: Re: Wish us luck !!
Post by: Andy Battaglia on January 04, 2011, 04:11:48 PM: Zaini,

I would wait until, the ferritin goes below 500 before lowering the dose.
Title: Re: Wish us luck !!
Post by: Zaini on January 04, 2011, 04:14:00 PM: Thanks Andy,

I was also thinking the same,just wanted to confirm i was on the right track.

Zaini.
Title: Re: Wish us luck !!
Post by: Sharmin on January 04, 2011, 06:18:22 PM: Zaini,

That is excellent news, I agree with Andy - keep her on the current dose until her iron levels are below 500 because you want to decrease her iron level to less than 500 and then maintain her at levels below 500. I am so glad for you and for her:) Your hard work and patience are paying off:)

Sharmin
Title: Re: Wish us luck !!
Post by: Lena on January 04, 2011, 06:50:31 PM: I agree with Andy. Get it down and then consider lowering the dose.

Lena
Title: Re: Wish us luck !!
Post by: Bostonian_04 on January 05, 2011, 07:39:34 PM: Hi Zaini,

Very happy to hear Little E's ferritin level. You worked really hard to get here. All kudos to you and off course little Z.

Based on our experience, please stay extra vigilant on the liver function tests. possibly test it every month to make sure her liver is not affected by exjade.
Title: Re: Wish us luck !!
Post by: Manal on January 05, 2011, 09:06:30 PM: Finally Zaini, :hugfriend congratulation and keep it down :biggrin

manal
Title: Re: Wish us luck !!
Post by: Zaini on January 06, 2011, 12:00:31 PM: Thank you everyone, :hugfriend

Sharmin,Lena,Bostonian,Manal, :hugfriend

We are keeping her SGPT in check,we get it checked every time she goes for transfusion,on her last transfusion it was 22, Do we need to do LFT too?

Thanks for all your support.

Zaini.
Title: Re: Wish us luck !!
Post by: Dori on January 11, 2011, 08:12:30 AM: Yes, little Z and Ziani, keep the therapy going! I believe soon you are in control about little Z's ferritin.
Please tell little Z shes an inspiration for all, atleast for me. Her studies are going well?
(L)
Title: Re: Wish us luck !!
Post by: Zaini on January 11, 2011, 12:05:42 PM: Thank you Dore :hugfriend you are an inspiration for us as well, yes her studies are going pretty good,she has memorized more then half of the Holy Quran,and with that her academic studies are going good as well.

Love,

Zaini.