Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: zahra on April 28, 2010, 09:20:51 AM

Title: starting Exjade
Post by: zahra on April 28, 2010, 09:20:51 AM
Hi,
My son will be two years old next month and we have been informed that he will be put on exjade at his next visit on the 6th of May which will be about 4 days before his birthday. His ferritin has been over 1000 for two months now. I have been fretting about all the possible side effects. I hope they arent a serious problem for him. I have been reading about how the ferritin goes up before it starts to come down in seriously iron overloaded patients. is it the same even when the ferritin isnt so high? When should I expect to see a decrease? Any tips on how to get a two year old to take it would be highly appreciated. Should I initially try a single dose or split dose? My doctor had initially okayed using the supplements and homeo meds until exjade and hydroxy urea are started. Is it ok to continue them? Even if the doctor disagrees? I think hydroxy urea will be started later so side effects can be judged seperately.
Wish us well.

Zahra
Title: Re: starting Exjade
Post by: maha on April 28, 2010, 09:49:56 AM
Hi Zahra
Start with a lower dose and build it up eventually to the required dose. My son Alhumdulillah hasn`t had any of the side effects other than an initial loss of apetite. I first gave his med with water but he puked, so I mix it with orange juice. After a few sips when he used to refuse to drink further I used to give him the same way I would give him antibiotics       ( 10ml medicine spoons).At the age of 2 my sons ferritin was over 2000 and 18 months of chelation later is still around the same figure. Everyone responds differently so only time would tell.

maha
Title: Re: starting Exjade
Post by: zahra on May 10, 2010, 05:44:21 AM
Hi everyone,
My son started exjade four days ago. The first day was easy as he was really fascinated by the battery operated stirrer the doc gave him from an exjade starter kit. Day 2 the novelty wore off but he drank it. Day 3 he drank it so he could go out to drop his sister off at her bus stop. Day4 he refused to drink it. Since it was his birthday gave him one of his gifts on condition he drinks it.......still very reluctant , even though his sister mock raced with him to see who finishes the juice first. After an hour he only wanted to eat yogurt saying his tummy hurt. Vomited half way to his regular amount of yogurt . Went to sleep still complaining of tummy ache.
I know the leaflet says its a common side effect and just keep them hydrated but I cant help being concerned. I truly hope this will be temporary.
Interesting point is that his ferritin was 912 when starting . It had been 1234 and 1142( he had been sick so had jumped from 765 to 1234 in 4 weeks) the two months before. Doc said it will be more then 1000 in reality b/c he was transfused after the 912 sample was taken.
The doctor had recommended starting on 30mg/kg  which would be 375mg at weight of 12.6 kg. However the pharmacy had only the 250mg tablets and not the 125 ones so we have ended up starting on 250mg until the other ones become available so its already a lower dose.
Thanks for listening.
Zahra
PS: The doctor okayed the supplements and homeo meds so going to continue them
Title: Re: starting Exjade
Post by: Andy Battaglia on May 10, 2010, 02:06:47 PM
Hi Zahra,

I usually recommend a starting dose of no more than 1/2 of the needed dose and as low as 1/3. It takes a week or two to get more accustomed to the drug, especially with small children. Novartis recommends a starting dose of 20 mg/kg and not 30. We have found that an even lower dose works better when first beginning the drug. We have also recently begun to advise splitting the dose into two daily doses, as the result of the experience of several people who have tried this with their kids and found much less nausea. The whole dose is still taken but taken this lessens the stomach upset. It also gives a full 24 hour chelation, since Exjade has a half life of no more than 16 hours.

I would suggest starting again with a low dose split into twice daily. This is far preferable to quitting Exjade altogether. This has worked for many patients, and will likely help your son tolerate the drug better. Once he is used to it, you can raise the dose, but I would suggest to keep the dose split into twice daily.
Title: Re: starting Exjade
Post by: zahra on May 10, 2010, 03:26:01 PM
Dear Andy,
Thank you for your prompt reply. I had asked the doctor about starting on a lower dose but he didnt agree. Sometimes it seems god helps and they didnt have the whole dose . The 250 mg they do have is about 20mg/kg and not 30mg/kg. The pharmacist says you have to throw away half the tablet if you split it to get the 375 mg recomended. That is prohibitively expensive. I didnt believe my ears when I found out the price. A nurse told me that this is nothing .They have one father who is paying Dh 40,000 a month for exjade b/c the childs ferritin is high. (weight high also????). Its insane! Anyway the doc then said to start at this dose and increase as it becomes available. I cant buy smaller doses by myself as Exjade is available only at this hospital in my city and only by prescription.
If the insurance company doesnt approve soon maybe I can get Asunra from Pakistan.
In the meantime I am thinking of giving it another shot tomorrow. Maybe it was just a one time thing. i havent missed a dose yet.If it repeats I will contact my doctor and get him to prescribe a smaller dose and agree to split dosing. One more question though. How long should he have not eaten to give the second dose of the day? Thanks again for all your invaluable help.
Zahra
Title: Re: starting Exjade
Post by: Bobby on May 10, 2010, 03:40:20 PM
Hello Zahra,
 
I hope your little one gets better at accepting his medicine. Keep trying.

I'm due to start exjade as soon as i hear back from the Dr., maybe even this week. I just wanted to remind everyone to not use metal utensils or metal containers to mix exjade. Also, when Andy mentioned splitting doses I thought about purchasing a pill splitter, because I normally cut pills in half with a knife. After researching I noticed some pill cutters use a thin blade to cut the pill, so just be aware of this also.

Take care of yourselves.
Title: Re: starting Exjade
Post by: Andy Battaglia on May 10, 2010, 03:41:04 PM
Zahra,

The updated Exjade prescribing information is attached to the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1928.msg16165#msg16165 

Quote
DOSAGE AND ADMINISTRATION-----------
• Recommended initial daily dose is 20 mg/kg body weight, taken on an
empty stomach at least 30 minutes before food.

30 mg has been shown to cause problems when starting and the prescribing info reflects this. However, in actual use, changes to the administration of Exjade come sooner. Dose splitting is a new idea but this has already reached the doctors and many doctors are now recommending this, especially where young patients are involved. At least one small study has recently been launched to see the effect of taking Exjade with meals, so we may see even more refinement of the instructions as time passes. Currently, the "take 30 minutes before a meal" instruction stands (but I would like to hear from anyone else who may have tried Exjade with meals or taken it with something other than water, apple juice or orange juice).

If you can get Asunra, it is the same drug and far cheaper.
Title: Re: starting Exjade
Post by: Andy Battaglia on May 10, 2010, 03:43:29 PM
I should add that Novartis does supply Exjade in different strengths, so physically splitting the pills may not be necessary. In the US, Exjade can be found in Tablets for oral suspension: 125 mg, 250 mg, 500 mg. Asunra is also available in various size tabs.
Title: Re: starting Exjade
Post by: Lena on May 10, 2010, 04:27:29 PM
I am curious,

Zahra,

has the doctor even mentioned Ferriprox to you?


Lena.
Title: Re: starting Exjade
Post by: zahra on May 10, 2010, 05:06:14 PM
Hi Andy,
it would be great if they could give exjade with foodas it will probably reduce stomach problems significantly. Exjade is available in different strengths here also (usually). Its just our luck that they ran out just now. They hope to have more of the 125mg ones in a day or two. I have read the information in the link and showed it to one of the junior doctors at the hospital. It made him really wary about being the one to introduce us to exjade . He even warned the doctor who did that i probably know alot and left quickly. ;) You guys are great!
Zahra
Title: Re: starting Exjade
Post by: baal on May 10, 2010, 05:16:12 PM
i splitt my dose in 2 and

take it with a meal....  panos
Title: Re: starting Exjade
Post by: Andy Battaglia on May 10, 2010, 05:44:54 PM
And I would like to add that Panos has had very good success lowering his iron load, so perhaps taking it with meals has no negative effect on the chelating ability of Exjade.

It has always been the patients who have discovered new ways to use their chelation. It has been the doctors and drug companies who have adopted these methods after proven by patients.
Title: Re: starting Exjade
Post by: zahra on May 11, 2010, 05:01:34 AM
Hi Lena,
The doctor did mention ferriprox and desferral but prefers exjade. Perhaps this is b/c they are associated with the cleveland clinic and ferriprox isnt allowed in the US yet or b/c they are part of an exjade trial. Or maybe its just b/c its once a day.Just guessing.
The good news is that though I had to use a syringe to get the exjade down today (b/c of huge protests) there was no vomiting and no complaint of pain either. Hip hip hooray! Maybe its b/c he fell back asleep soon after drinking it??? I will try to put him back to sleep after exjade again tomorrow.
Thanks for asking
Zahra
Title: Re: starting Exjade
Post by: zahra on May 11, 2010, 05:08:50 AM
Hi Bobby,
Can you please find out if it is ok to cut the pill in half. The pharmacist didnt seem to think so. She said you have to throw away what you dont use immediately. Maybe you can buy the pills at half the dose to split it up???
I know about not using metal utensils but am really curious about why the medicine is sold in metal foil blister packs??????
Zahra
Title: Re: starting Exjade
Post by: Lena on May 11, 2010, 05:16:54 AM
Zahra,


It is o.k to cut the pill into two and use half now and half later. I know for sure. In fact, I suggested,  in this forum,  splitting the dose in two, when my doctor suggested this to me stating it is better for 24 hour chelation. It seems lighter for the stomach,too. We have members in this site who adopted the dosage splitting and their kids accepted it better than the one dosage effect.
Pity your doctor does not prefer ferriprox as it is very good medication,too.

Good luck,
Lena.
Title: Re: starting Exjade
Post by: zahra on May 14, 2010, 07:13:17 AM
Hi all,
Today is the 8th day.I got the 125mg exjade on day 6 so have been giving that in evenings so its a split dose albeit unequal. Still taking 250mg in mornings. I just wanted to mention that the stool colour changed on day 4 so it seems the exjade is working now. Day 4 is also the only day my son has had stomach discomfort and vomited, after that he has been ok. The doctor had said the skin rash usually appears b/w day 10 and 15 and goes away in 15 more days without leaving any scars and without discontinuing exjade and that is the most common side effect. I hope he doesnt get it .Lets see how things go on from here.
Zahra
Title: Re: starting Exjade
Post by: Manal on May 15, 2010, 01:07:00 AM
Thanks Zahra for the update, best of luck

manal
Title: Re: starting Exjade
Post by: Zaini on May 17, 2010, 04:20:43 AM
Best of luck Zahra :thumbsup

I hope your little one won't experience any skin rash,Lil Z never had any such problem Alhumdulillah.

Zaini.
Title: Re: starting Exjade
Post by: Sharmin on May 17, 2010, 02:58:19 PM
Best of luck Zahra,

Sharmin
Title: Re: starting Exjade
Post by: joanne on May 22, 2010, 02:26:43 AM
Hi everyone..I have THAL intermedia but don't transfuse...

I had an MRI done on my liver at the Toronto General Hospital by Dr Ward and he has advised me that my iron in my liver is 14.5

I will be starting Exjade and feel very nervous..Can I maybe get some feedback on Exjade??





Sincerely



Joanne
 ps why can I not use metal  cuttlery?
Title: Re: starting Exjade
Post by: Andy Battaglia on May 22, 2010, 02:42:51 AM
Hi Joanne,

The metal cutlery is just a precaution. It was believed that since Exjade chelates iron, that it could react to the iron in cutlery or containers, thereby reducing the effect of the drug. There is no danger. It's advised in the hope that avoiding metal means the drug will give you its full potential.

Regardless of what the doctor advises, start Exjade on a low dose of 1/3 to 1/2 the required dose. This gives your body a chance to get used to the drug. Novartis advises 2/3 dose for starters, but my observation has been that patients do better when they slowly build the dose over a 2-3 week period.

Your liver iron does need to be addressed. Has your heart been checked with the T2* test?
Title: Re: starting Exjade
Post by: joanne on May 22, 2010, 04:11:15 AM
Thanks Andy...yes and all was fine with my heart...what do you mean my liver needs to be addressed? isnt that why Im going on Exjade?
Title: Re: starting Exjade
Post by: Andy Battaglia on May 22, 2010, 02:44:50 PM
Yes, Joanne, that is why you've been prescribed Exjade. When I respond to a post, I try to respond so that anyone else reading it can also benefit. It may be stating the obvious, but I do try to make use of every teachable moment. With intermedia, many people are not aware that iron overload can occur, even when not transfusing. Of course, this is the direct result of excess iron absorption from the diet, which is why a low iron diet is often recommended, along with drinking tea with meals, as it helps to inhibit iron absorption. Foods rich in vitamin C, such as citrus, should be avoided with meals, because they increase iron absorption. As far as the liver iron level, your doctor probably already explained this, but this level should be lower than 7 and the lower the better. You may already be aware of all of this, but I do try to answer so that many people can benefit.

One more tip about Exjade that I want to pass on, is that many people have had problems with nausea, so in the past year, quite a few people have tried splitting the dose and taking half in the morning and half in the evening. This does seem to decrease the nausea, so if this becomes a problem for you, it's something to consider.
Title: Re: starting Exjade
Post by: joanne on May 22, 2010, 08:54:46 PM
thank you for your wonderful advice Andy!!! :)

Will any tea do?

I am very worried because I have a 5 year old son..so I am worried about something happening to me...do you think the Exjade will help remove the iron?

Title: Re: starting Exjade
Post by: Andy Battaglia on May 22, 2010, 09:27:24 PM
Hi Joanne,

Yes, Exjade is good at removing liver iron. If your heart iron was also a problem, I might suggest some desferal, also but like many with intermedia, your liver was first to get the iron load. Exjade should work fine. I was curious about something. I have often read that non-transfusing intermedias can get iron build up in their organs that is not reflected in their ferritin levels (the ferritin level will look OK but the organ iron may be high). Did you have any ferritin tests and if so, what was your level? This info is helpful when advising others with your condition.

And yes, any tea will do and milk is also something of an iron absorption inhibitor, so adding milk is also fine. Vitamin C supplements should be kept low and citrus is OK to take between meals. If you have any questions about what foods to minimize, let us know.

And we all want to see you around to take care of your son, also, so feel free to ask anything. One bit of info that would help is do you still have your spleen?
Title: Re: starting Exjade
Post by: joanne on May 22, 2010, 10:45:16 PM
Andy, I dont remember my ferritin level but I know its very low...I will get the numbers and post them!


Thanks for your help!
Title: Re: starting Exjade
Post by: Manal on June 02, 2010, 01:43:23 AM
Andy,

I remember from last year conference that i copied the findings that were investigated in a study that discussed LIC in thal intermedia. You can check the numbers below

http://www.thalassemiapatientsandfriends.com/index.php?topic=2863.0

Quote
* Unreliable readings of ferritin in Thal intermedia were also discussed and how same ferritin has a different LIC in thal major and thal intermedia patients. I was able to copy the readings and you will find a great difference in the LIC range

Ferritin                         LIC mgFe/dry weight TM         LIC mgFe/dry weight TI
500                                       2.7                                 5.8
1000                                     5.4                                    11.6
1500                                       8.2                                 17.4
2000                                       10.9                                 23.2

These numbers really shows that we never depend on serum ferritin in TI for detecting iron overload

Also increased LIC is correlated with PHT in thal intermedia patients

manal
Title: Re: starting Exjade
Post by: zahra on June 03, 2010, 11:12:35 AM
Hi everybody,
Its now almost a month on exjade for my son. the first week was 20mg/kg and then 30mg/kg. This was taken in an uneven split dose of 250 mg in the morning and 125 after the afternoon nap. Ferritin at three weeks had gone down just a little ( as expected) from 912 to 896. My son does have tummy aches sometimes , especially after the morning dose and has vomited twice. I have noticed that this doesnt happen if I suceed in putting him back to sleep after giving him the medicine as advised in a post here. The doctor prescribed zofran.......I haven't given him it. Putting him back to sleep must have less potential side effects .:) I do wonder however if I should be concerned about any damage to his stomach ,like the doctor hinted at possible ulcers. I mean does a mild transient tummy ache and occcasional vomiting really indicate that? and if so what should I be watching out for and how is it preventable?
Thanks for listening
Zahra
Title: Re: starting Exjade
Post by: Zaini on June 03, 2010, 02:27:09 PM
Zahra,

I can't say anything for sure,but i can share my experience,its been more then a year my daughter started exjade,and she does have tummy ache often,and very rarely she throws up too,but in last summer we did her annual ultrasounds and everything was ok Alhumdulillah,and we are due for another annual round of tests and ultrasounds,other then that our doctor never showed any concern about occasional tummy ache being something serious.So i hope there is nothing harmful in these occasional tummy aches,as they are very common side effects of exjade.

Zaini.
Title: Re: starting Exjade
Post by: joanne on June 09, 2010, 12:56:01 AM
Hi everyone..just wanted to let everyone know I started Exjade and so far so good...I also started Vitamin E tonight :)
Title: Re: starting Exjade
Post by: Denise on June 09, 2010, 02:41:51 PM
Dear Zahra,

If you can get your hands on a medicine dropper that would help a great deal.  My daughter has been taking Exjade for a few years now.  We started with the dropper and now she's 7 and drinks it with a straw in orange juice.  And we never split her dose.  Only drawback was alittle runny stool.  I won't lie...you will get frustrated when they bulk at taking the medicine.  You just have to come up with new ideas to get them to take it.  We still play the game of "beat the clock".  And we change between the orange and apple juice for variety.  My doctor suggested Gatorade to mix the Exjade with.  He said he had good results but I never did because it has never been tested.  Hope this helps.
Title: Re: starting Exjade
Post by: Zaini on June 09, 2010, 04:24:13 PM
Hi Joanne,

I hope Exjade will be helpful for you,good luck :goodluck .

Zaini.
Title: Re: starting Exjade
Post by: zahra on June 09, 2010, 04:33:35 PM
Hi Zaini and Denise,
Thanks for your advice. I am using a syringe right now and my son does protest alot but he is small enough to control right now. When he realises i wont let him go till he is done he drinks it. i have to work on getting to want to drink it before he's older. I guess I will learn as he grows. Thanks again
Zahra
Title: Re: starting Exjade
Post by: PositiveVibes on June 15, 2010, 04:17:21 PM
Hi all ! I started exjade 11 days ago and my initial dose is less than 10 mg/kg which i know is lower than the usual recommended one.

I haven't had any problems so far but last night noticed some rashes on my skin. Today there are even more and a little bit itchy. I know it is one of the side effects of Exjade but I am worried.

I dont know if i need to do sth or stop using it .. Although it is such a low dose I still have them ... I was about to increase it to 20 mg soon .. but now i am confused.

If anyone has a similar experience could u please share it with me .
Tnx !
Title: Re: starting Exjade
Post by: Andy Battaglia on June 15, 2010, 04:20:52 PM
You don't have to stop Exjade. The rash should clear up within a week to ten days, but wait until the rash is gone before raising your dose.
Title: Re: starting Exjade
Post by: PositiveVibes on June 15, 2010, 11:44:25 PM
Hi Andy ! Tnx for your advice. I will do my best not to stop Exjade althoughmy rashes are becoming worse. Now I have them on my face and they are like a chickenpox and are itchy.

Do u think it is possible to overcome them .. i am afraid of being unsuitable for exjade because of the side effects.  I wish I can use it in future cause life is so much easier with it ...

I will keep posting how the things are going ..
Tnx
Rozalina
Title: Re: starting Exjade
Post by: Andy Battaglia on June 15, 2010, 11:52:10 PM
The rash does not last. If it's bad, you can stop Exjade for a couple days and then resume. I've known of only one person who had to stop completely.
Title: Re: starting Exjade
Post by: PositiveVibes on June 16, 2010, 10:55:12 AM
Hey !
I could not  fall asleep for a long time last night.. they were very itchy and irritating... Hower when I woke up my lips are very swallowed and the rashes are even more than yesterday.

I talked to my doctor and she said i need to stop exjade until they are gone. I am so afraid of being even worse .. do u know what i can do .. how long does it take to overcome the rashes...  is it dangerous that i have such a severe reaction ?

If anyone has information or experience pls write to me !
Rozalina
Title: Re: starting Exjade
Post by: PositiveVibes on June 18, 2010, 04:17:41 PM
Hey all !
My doctor adviced me to stop exjade for some time. It is my second day without taking it . I was recommended to take Klaritin (Loratidin) for 10 days because of the rashes . After that I will start Exjade again with 250 mg/kg= quite quite low dose.

Keep ur fingers crossed for me ! Hope I want need to go back to the painful use of Desferal !
Thank you !

Rozalina
Title: Re: starting Exjade
Post by: zahra on June 18, 2010, 05:06:40 PM
Hi everybody,
41 days after starting exjade ferritin has gone down to 798 from 886.First three weeks it had gone from 912 to886. Its really working!!!!  In other good news my sons Hb was 10 at three weeks this time so transfusion interval increased to 4 weeks.  :biggrin
Zahra
Title: Re: starting Exjade
Post by: zahra on June 18, 2010, 05:14:41 PM
Hi all,
One more thing I wanted to post was that the doctor told me to decrease the volume of juice with exjade  to between 100 and 120 ml instead of the 200ml the pharmacist had said. Hopefully this will reduce the nausea ( too much liquid on an empty tummy kind) and help his appetite which has really gone down. Too many calories in the juice maybe.  :huh
Zahra
Title: Re: starting Exjade
Post by: Manal on June 18, 2010, 06:04:35 PM
Thanks Zahra for sharing the good news, so happy for you :hugfriend

manal
Title: Re: starting Exjade
Post by: Danielle on June 19, 2010, 06:39:21 AM
Hello Rozitka,

I had the same rash that you are experiencing, and it resolved itself in about a week or two after my doctor had me lower the dosage.  It covered my body completely and itched like crazy, so I can definitely empathize with you!  :hugfriend  I'm glad that your doctor had you stop it for a while, but I wouldn't worry about the rash not going away, because it will. Just give it some time.  Once my rash was gone, the Exjade was increased again, and I never had that rash again, thankfully.  Hang in there, you will get through it.   :bighug
Title: Re: starting Exjade
Post by: PositiveVibes on June 20, 2010, 03:55:47 PM
Hey Danielle  !
 When u had your rashes u didnt stop exjade u just lower the dose?
Its my 4th day without using any chelation and I stopped taking the medicines for the rashes that my dr prescribed to me. I will start taking Exjade from tmrw with very low dose 5 mg/kg and eventually will increase it. This is what Dr. Shah adviced me to do. Hope everything will  be ok and I will be able to use Exjade instead of Desferal.

Did u take any medicine for the rashes when u had them ? Cause my Dr here told me to drink Klimastin for 10 days but since the rashes were gone on the 4th day i stopped taking the medicine ...

Tnx !
 :wink
Title: Re: starting Exjade
Post by: zahra on October 03, 2010, 07:34:40 AM
Hi ,
Just an update. 4 months after starting exjade ferritin is down to 698. I have stopped splitting the dose b/c it didnt help with the vomiting and because the doctor (really) disliked the idea and said to give him exjade an hour after meal at night (in a single dose) instead.  I have taken this to mean timing can be flexible. I think taking so much liquid on a tummy that has been empty all night is inviting trouble .............but its also hard to get in an hour before and after exjade during which he doesnt eat so i have moved it to after his nap. There isnt a fixed nap time even so sometimes its in the morning , sometimes evening and sometimes afternoon. Now that he has also started hydroxy urea which also needs an empty tummy split dosing seems really hard. Maybe I will come back to it later.
I also wanted to ask about what ferritin level should exjade be stopped at . Two years ago my doc had said at 500 but now same doc says they are now targeting 300. I know its a balance between how much its needed and side effects but what is the standard now?
Zahra
Title: Re: starting Exjade
Post by: zahra on October 03, 2010, 07:39:40 AM
Oh and one more thing that is maybe helping is that my son has become addicted to tea. Having been an anti tea addiction person all my life I feel sort of guilty about that when he cries for tea like he does for nothing else but I try to convince myself that it is good for him. He has tea once or twice a day but not with meals yet as he always wants to drink with his Baba.
Zahra
Title: Re: starting Exjade
Post by: Manal on October 03, 2010, 08:36:03 AM
Zahra,

Why are you annoyed from this, actually you can increase his intake as much as you can. The only disadvange on tea is stopping iron absorption  during meals and that is exactly what we want for our children. You child is doing the right thing :rotfl

Tea is an antioxidant especially green tea and it is highly recommended  in thalassemia

manal
Title: Re: starting Exjade
Post by: zahra on October 26, 2010, 03:38:12 AM
Hi ,
5 months post exjade and ferritin 548. :biggrin
Zahra
Title: Re: starting Exjade
Post by: Manal on October 26, 2010, 06:58:17 AM
Congratulations Zahra  :wink

manal
Title: Re: starting Exjade
Post by: zahra on October 26, 2010, 10:09:37 AM
Thank you Manal
Zahra
Title: Re: starting Exjade
Post by: Zaini on October 26, 2010, 05:24:44 PM
Wow!! thats a great news  :biggrin . Congrats .

Zaini.
Title: Re: starting Exjade
Post by: fatinsyakirah on February 29, 2012, 01:34:31 AM
Hi all,

This is my first posting and I am a new comer in this forum...FYI my daughter was diagnosed with HbE Beta-Thal in Feb 2010. She is now 6 yrs old. Initially she only need blood transfusion every 10-12 weeks or when her Hb below 7. However, the blood transfusion trend become more closer from 10 weeks to 8 weeks to 6 weeks and now in every 4 weeks which in every transfusion her Hb was lower than 6 or at least 7. The lowest Hb she ever had is 4.9. Since Feb 2010 until today she has had 13x of blood transfusion. And of course when she had received many times of transfusion her ferritin keep on increasing. Last month the Doc informed that her Ferritin level was about 1550 which need the chelation therapy to be started. The Doc gave us an option whether to take the Desferal (by injection) or Exjade (consume).. we decided to take the exjade since we feel so sorry to see our daughter suffering with everyday injection. So, today is the first day of my daughter taking exjade. Her weight is only 18 kg but the Doc prescribed her with 625 mg. My concern is it ok the dose with her weight? So far so good. I mixed the tablet with about 200 ml of an orange juice and she could finish it. I don't see any side effect yet since today is her first day taking exjade and she resumes her pre-school as usual. Please advise me any misunderstanding or missing information in taking care of thalessemic patient especially by taking the exjade.

Thanks in advance
Title: Re: starting Exjade
Post by: Andy Battaglia on February 29, 2012, 02:55:01 AM
Hi fatinsyakirah and welcome,

The standard dose for Exjade is 30 mg/kg, so her dosage by that formula would be 540 mg daily. 625 is not out of line. It is slightly higher, but this will be a positive, as it will help clean out the existing iron load and help to prevent additional iron loading from taking place. Also, as she grows, the higher dose will be necessary. Also, keep in mind that Novartis has now approved the use of Exjade with a variety of soft foods and juices, so if any problems arise, you can try other foods. It is recommended that the Hb is not allowed to drop below 9, and since she is now chelating, this low threshold should be observed so that proper growth and development takes place.
Title: Re: starting Exjade
Post by: fatinsyakirah on March 01, 2012, 08:49:05 AM
Hi Andy,

Thanks for the respond. The Doc did mentioned to us if the Hb level does not increase to at least 9 so they will start to transfuse every 3 or 2 weeks. I'm really worried what will happen if the transfusion become more frequent. One more thing I forgot to mention is, my daughter's spleen was first detected with about 2cm and now it enlarged to 8cm... this condition also make me so worry... is there anything we can do to prevent the spleen to keep on enlarging?

thanks in advance
Title: Re: starting Exjade
Post by: Narendra on March 01, 2012, 04:42:53 PM
The spleen enlarges when the HB levels is low. By keeping her HB levels around 10 - the spleen won't work extra hard, so it won't enlarge.

I understand with transfusion you are worried but think of it - Without transfusion, the other complications (like spleen enlargement) occur. Plus with better management of her blood count - you will have a healthy (and happy) daughter.
Title: Re: starting Exjade
Post by: Andy Battaglia on March 01, 2012, 07:21:47 PM
I also want to add that 8 cm is not unusual in a thal. And Narendra is exactly right. Higher Hb means less spleen enlargement, along with all the other positives that go along with a higher Hb level. I do suggest folic acid, natural vitamin E supplements and magnesium, to help red blood cells live longer.
Title: Re: starting Exjade
Post by: fatinsyakirah on March 02, 2012, 09:48:08 AM
Thanks to Narendra and Andy for the info and tips. As for now my daughter only takes folic acid and vit C (30mg-chewable). Her favorite food is only fried chicken or chicken rice and no vege at all. she drinks milk at least once a day. It's very hard for me since she always refuses to take any good  balance meals. She just loves chicken very much. What kind of foods can be consumed to help the red blood cells to live longer?  I think i must do something to make sure she is healthy and having a proper growth. I hope all of you can support us and I am sure that not only us facing this situation.

Best Regards
Title: Re: starting Exjade
Post by: Andy Battaglia on March 03, 2012, 03:47:40 AM
I would suggest adding a daily multivitamin without iron. These are available in chewable and liquid forms. Make sure there is no iron. Will she eat any types of fresh fruits?
Title: Re: starting Exjade
Post by: Bostonian_04 on March 03, 2012, 07:58:06 PM
fatinsyakirah,
I agree with Narendra...even though transfusion seems scary, but regular transfusion will maintain your daughter's Hgb close to 10 and she will feel goo and her appetitie will also return. My daughter is Bthal major and I see that when her Hgb is low she does not eat well. we use multivit gummies by wholefoods which do nto contain iron and is tasty too.
Title: Re: starting Exjade
Post by: fatinsyakirah on March 06, 2012, 01:09:16 AM
Hi all..

sorry for a late reply... Andy, she eats only selected fruits like oranges, grapes, banana and some local fruits... I think I would agree with you guys if I could provide her with multivitamins. I'll get one today... Thanks for sharing.

Mama Fatin
Title: Re: starting Exjade
Post by: mummy_timmy on March 06, 2012, 01:06:09 PM
Hai and Salam Mama Fatin,

My little z get his month supply of multivitamin without iron every month together with folic acid.You just need to request from the Dr.Little Z get his treatment at PPUM.


Title: Re: starting Exjade
Post by: fatinsyakirah on March 07, 2012, 01:06:59 AM
Salam mummy_timmy,

My daughter get her treatment at HUKM, could you please ctc me through my email add liza.anjeliza@gmail.com for further information sharing. Really appreciate it.

Hi Andy and all,

Just would like to ask about having the exjade with lychee juice? Actually not so sure if it really pure juice or not but the manufacturer claimed it was made from pure lychee juice. My daughter loves it very much and could finish it without any complain. Need some verification on this.

Thanks all
Title: Re: starting Exjade
Post by: Andy Battaglia on March 07, 2012, 01:14:09 AM
Pure lychee juice is very nutritious, as long as there is no added sugar. It is low iron but high in vitamin C, so she should not drink it with meals that contain a lot of iron. If she will take Exjade with lychee juice, then do so, because she'll be taking it on an empty stomach. Try to avoid with iron rich meals and get her used to it as a snack so that the vitamin C doesn't add to iron absorption from her diet.
Title: Re: starting Exjade
Post by: fatinsyakirah on March 07, 2012, 01:22:52 AM
Hi Andy... now I am happy with your explanation... :biggrin... and thank you so much for your advises..
Title: Re: starting Exjade
Post by: fatinsyakirah on March 08, 2012, 01:26:22 AM
Hi...

This morning I found out that there are rashes all over her body especially on her neck, chest and arm... I read from the template given that the rashes is  a common situation. In what condition should I refer to the Doctor?  :( :(..

Thanks all
Title: Re: starting Exjade
Post by: Andy Battaglia on March 08, 2012, 04:48:45 AM
OK, this is common with Exjade. When first starting Exjade you shouldn't start on the full dose immediately. You should start on 1/3 to 1/2 dose for about two weeks, just to get the body accustomed to the drug. If the rash is bad, I would suggest stopping Exjade until the rash clears up, and then starting it again with a low dose and take a couple weeks before you raise it to the normal dose. Also, splitting the daily dose into two and taking half in morning and half later in the day, will also reduce the reaction. If the rash isn't too bad, you can probably just lower the dose for a couple weeks.
Title: Re: starting Exjade
Post by: fatinsyakirah on March 08, 2012, 10:27:11 AM
owh thanks Andy... should I tell the Doctor that I am lowering the dose? Hmm... why the Doc didn't tell us about starting with a lower dose... poor my daughter... :( :(... I'll start tomorrow by reducing the dose about half for 2 weeks and we'll see how... thanks again Andy for your explanation...
Title: Re: starting Exjade
Post by: Andy Battaglia on March 08, 2012, 03:14:18 PM
Even Novartis instructs to start with a lower dose at first and then move to the required dose. The recommendations we give at thapal are based on the real life practice of hundreds of patients. It's up to you to tell your doctor. If your doctor disagrees, you can show him the prescribing information, "The recommended initial daily dose of EXJADE is 20 mg/kg body weight."
I go farther and say 10-15 mg/kg for the first one to two weeks, depending on whether or not the patient shows signs of reaction.
Most doctors are unaware of splitting the dose. This strategy was developed by the members of thalpal and has been shown to be both easier to take without reactions, and also more effective as a chelator.
Title: Re: starting Exjade
Post by: fatinsyakirah on March 09, 2012, 10:11:15 AM
Actually this morning I cut the pill into two and just gave my daughter half dose... there's no significant effect yet so far but I did tell the doctor through a phone call. She just told me to stop the medicine immediately and come to see her next Tuesday since the clinic open on Tuesday and Thursday only. In the mean time, I think I should stop the Exjade first because the rashes seem scary to me... I will discuss with the doctor with your suggestion to start with a lower dose or by splitting the dose. Logically, that's make sense and I am totally agree with you. Thanks Andy for your thoughts.

Best Regards
Title: Re: starting Exjade
Post by: Emby on December 07, 2012, 01:43:22 PM
Hi....my 15 yr old son has been told by his Consultant to start taking Exjade (switch from Ferriprox). This is because his liver readings has gone up.
 In 2009 it was 2.4mg, 2010 3.5mg and 2012 5.6mg. She has told him to take 4 tablets (500mg) once daily. Having read through some of the articles relating to this drug I understand that it is good at chelating Iron from the liver but my worry is that his ferritin is
presently at 360...is the ferritin too low to start with Exjade and do you think the dose is too high considering it is advisable to start at  a lower dose due to side effects? He weighs 67.5.
Title: Re: starting Exjade
Post by: Pratik on December 07, 2012, 02:50:50 PM
Hi....my 15 yr old son has been told by his Consultant to start taking Exjade (switch from Ferriprox). This is because his liver readings has gone up.
 In 2009 it was 2.4mg, 2010 3.5mg and 2012 5.6mg. She has told him to take 4 tablets (500mg) once daily. Having read through some of the articles relating to this drug I understand that it is good at chelating Iron from the liver but my worry is that his ferritin is
presently at 360...is the ferritin too low to start with Exjade and do you think the dose is too high considering it is advisable to start at  a lower dose due to side effects? He weighs 67.5.
Split the dose.

If not 500, 350 or 400 shall be good. Don't worry, low dose will remove iron from parts such as liver, heart, etc.

-P.
Title: Re: starting Exjade
Post by: Andy Battaglia on December 07, 2012, 03:13:31 PM
The dose of 2000 mg is correct. As Pratik said, splitting the dose and taking half in the morn and half later in the day, will lessen side effects.
Title: Re: starting Exjade
Post by: Bostonian_04 on December 07, 2012, 05:12:34 PM
Hi Emby,

My daughter's ferritin is around 360 as well and she is on Exjade too. Her hemo strictly told us to split the dose - 1/2 in the morning and other 1/2 in the evening. So far we have not see any ALT/AST increase with this. So, splitting the dose is probably the best for your son as well.
Title: Re: starting Exjade
Post by: Emby on December 07, 2012, 09:56:38 PM
Thank you all for your reassuring replies.. :smiley

Can anyone help me with understanding what is the difference between ferritin and organ Iron?
Title: Re: starting Exjade
Post by: Pratik on December 08, 2012, 05:43:27 AM
Thank you all for your reassuring replies.. :smiley

Can anyone help me with understanding what is the difference between ferritin and organ Iron?
Ferritin reflects the value of iron in blood stream. Scans like Ferriscan help to examine the exact amount of concentration/deposition of iron in organs such as heart and liver.

So while talking to Eileen Scott of CAF recently, I came to know that the ferritin maybe very low or near to normal, but it's not necessary that organ iron will be less as well. It may also be the case that deposition in organs is very less and just the ferritin in blood stream is shown to be high, so that is a good point as well.

-P.
Title: Re: starting Exjade
Post by: Emby on December 08, 2012, 01:02:35 PM
Thank you Pratik.....thats why Lena always stresses never to stop chelating..:)
Title: Re: starting Exjade
Post by: Pratik on December 08, 2012, 03:47:53 PM
Thank you Pratik.....thats why Lena always stresses never to stop chelating..:)
Yes exactly. Keep it low dose, but never stop chelating!

It's a key to enlong your quality life.

-P.
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on September 03, 2014, 01:02:25 PM
Hi All,

Thanks a lot for sharing excellent information about Beta Thal.

My daughter is 3.5 years old her weight is 14.25 KG, her Ferritin is approx. 2200. Doctors tried Exjade last year but it didn't work for her as her LFT shoot up in two weeks. They stopped the Exjade immediately and after 10 months they have started again today just to see if she can cope up this time or not.

I am not sure is it good to start Exjade at this Ferritin level or not but my daughter is very relaxed to get the oral medicine.

She has been prescribed with 312.5 mg dose which I think its correct to start with. As recommended on forum we are going to split the dose and give her one in the morning and other half in the evening just to lessen the side effects.

I got a pill splitter to cut the medicine it dose have a small blade which I think it should not harm.

We are not sure what is best time to give the medicine i.e after meal or before 30-60 mins evening meal.

We are planning to give half dose in the morning which would after she is up from her bed and we are planning to give her empty stomach with no sugar orange juice.

Please advice what she should eat during Exjade, we really want that this time her LFT stays normal and she will be on Exjade.

Any replies would be really appreciated, Many Thanks

Wish you all good luck and good health.

Best Regards,
Atin Arora
Title: Re: starting Exjade
Post by: Canadian_Family on September 03, 2014, 04:58:03 PM
Splitting the dose is a wise idea. Morning and Evening time is good. You can give Exjade after food (breakfast and Dinner), no harm in it. The dosage seems fine given her age, weight and ferritin level. Exjade can be mixed in water, orange juice etc. Do not use fizzy drinks.

There is no specific food requirement if you are taking exjade.
Title: Re: starting Exjade
Post by: Andy Battaglia on September 03, 2014, 05:05:52 PM
The one thing I will add is keep her well hydrated. It does make a difference in the liver scores.
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on September 04, 2014, 11:39:53 AM
Thanks a lot for your prompt replies, I will keep you posted on it.

Best Regards,
Atin
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on September 16, 2014, 03:04:03 PM
Hi All,

This just to let you know my daughter started Exjade with 312mg of dose and its been 2 weeks she is taking happlily.

LFT results are normal - which is good.
Serum creatinine is also fine.
Urine creatinine protien ratio shows high which is approx 60

Doctor wants to continue for this week and check the resuts next week. We are spliting the dose (morning / evening )

Please could you guide me how we can get Urine creatinine ratio down? Trying to keep her hydrated.

Many Thanks and wish you all a very healthy life.

Regards,
Atin
Title: Re: starting Exjade
Post by: Andy Battaglia on September 16, 2014, 10:39:36 PM
Atin,

It may just be because the drug is new to her, but continue to concentrate on hydration, and make sure she is well hydrated when she is tested.
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on September 24, 2014, 01:47:45 PM
Thanks Andy,

I thought to let you know about this week results.

My daughter (Aadvika) was well hydrated at the time of test so Urine creatinine protien ratio came normal.

Serum Creatinine was also normal. Thanks for the advice.

Her LFT gone up this time any suggestions to bring it normal. It's the first time she will go for 4 week test and we really want the results to be normal so that she can continue to next one month.

Really appreciate for your reply.

Many Thanks,

Atin Arora
Title: Re: starting Exjade
Post by: Andy Battaglia on September 24, 2014, 02:34:14 PM
LFT's will rise with activity during the day, so get tested early in the day. Continue to keep her well hydrated and I encourage the use of liver friendly herbs like turmeric and nigella in cooking.
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on September 25, 2014, 10:26:27 AM
Thanks Andy for the suggestion.

Her test gets done first thing in the morning , We will use more Turmeric in cooking and add Nigella.

Much Appreciated again, lets keep our fingers crossed.

Title: Re: starting Exjade
Post by: atin.arora@gmail.com on October 01, 2014, 03:08:14 PM
Hi Andy,

Her LFT is gone up little bit again

ALT = 116
AST = 82

Please suggest is it ok to use Turmeric, Nigella seeds and Milk Thistle

2 times Turmeric + Nigella seeds with Honey
1 tab of Milk Thistle with food.

You reply will be highly appreciated. Many Thanks

May god give you all a health life.

Best Regards,
Atin
Title: Re: starting Exjade
Post by: Andy Battaglia on October 03, 2014, 04:41:24 AM
Yes, do try the herbs and see if they help.
Title: Re: starting Exjade
Post by: Pratik on October 12, 2014, 06:47:13 AM
I would definitely try Milk Thistle. I've been taking it with good Exjade doses (splitting it) and fortunately, my ALT/AST levels are staying around 40. Hope it will be same for your little one. :)

Best,

-P.
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on October 14, 2014, 11:28:51 AM
Thanks Andy, Pratik,

Much appreciated for your response.

Last week results were ALT 191 and AST 125, I immediately introduced 1 tab of Milk Thistle each day for 1 week and today her LFT results shown good results.

This week her ALT is 100 and AST 60 which is down approx by 50%. I am sure its because of Milk Thistle. Thanks to you all members for great research on herbs.

Please advise shall I continue giving her Mile Thistle, doctors are questioning if Milk Thistle is supressing EXJADE effect on Iron chelation? ALso she is just 3.5 years old , its ok to give her Milk Thistle at this age whereas its written on capsule not to be given under 18 years old.

Thanks all for great information and I wish for everyone great health.

Best Regards,
Atin
Title: Re: starting Exjade
Post by: Andy Battaglia on October 14, 2014, 02:20:17 PM
Milk thistle is one of the mildest herbs. Many products have the same statement, "do not give to people under 18" because they have never been officially tested on younger people. It has nothing to do with their safety. I wouldn't hesitate to use milk thistle anymore than I would hesitate to eat an apple. I will also add that I wish the founder of this group had listened to her mother and taken milk thistle, rather than listen to the misplaced warnings of doctors who convinced her not to use the herb. The doctors who warn about milk thistle do so based on a test tube study that showed milk thistle might affect dosing. This study has never been duplicated in living beings, once again proving the uselessness of test tube experiments. You've already seen the positive results. If anything, milk thistle will improve liver health, allowing the chelator to do its job.
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on October 14, 2014, 02:33:18 PM
Thanks Andy thats gives me a big relief, sorry I have bothered you with my questions and lot of misplaced statements, I will continue with Milk Thistile and do post you about the next week results..

Thanks again for your kind information.
Title: Re: starting Exjade
Post by: Andy Battaglia on October 15, 2014, 02:16:43 PM
Atin,

I am happy to share the info. Sometimes doctors need to dig a little deeper and they don't. The concerns about milk thistle are some of the silliest I have ever heard. It is one of the safest herbs there is.
Title: Re: starting Exjade
Post by: atin.arora@gmail.com on November 04, 2014, 02:29:31 PM
HI All,

Thanks for your support and comments.

Unfortunately Exjade didn't work for my daughter and its been stopped today. Her LFT results we not good and gone up high.

As suggested I used Milk Thistile, kept her hydrated and splitted the dose as well but things were no in favour.

When we started Milk thistle the LFT gone down and it came upto ALT 75 and AST 56 mark but later it started rising and gone upto ALT 189 and AST 126.
This week today ALT is 275 and AST 139, so doctor suggested to stop Exjade and put her on desferal.

Thanks again and I will keep posted, WIsh all for a healthly life.
Title: starting Exjade
Post by: lyhoang on March 04, 2015, 11:47:48 PM
Hi everyone,
My friend's son is 6 years old and lives in Vietnam, his weight is 44lbs, and his ferritin is about 1040. He has a blood transfusion every other 2 months and the transfusion amount is 200ml to 250ml. He is starting to take Exjade 250MG now.  My question is what should the dosage be ?  How many pills per day ?   It is very hard to find the proper information in Vietnam.  Any help or advise will be greatly appreciated.
Also if anyone knows of any programs that might be available to help with the cost of  Exjade  here in the states or in other countries that would also be very helpful.
Title: Re: starting Exjade
Post by: Andy Battaglia on March 05, 2015, 05:25:47 AM
The recommended dosage of Exjade is 30 mg/kg per day. For his weight, that comes to 1320 mg daily, but it doesn't have to be so exact. Because he only transfuses every two months, he won't accumulate iron at the same rate as most thal majors, so a lower dose of 20-25 mg/day may be enough, as long as his transfusion frequency doesn't increase. When the drug is first started, it is best to start with a low dose for two weeks, to minimize the initial side effects, especially the rash. 1/3 to 1/2 dose at first. In addition to liquids, Exjade tabs can be crushed and mixed with soft foods to make it easier to take.

Novartis does have a program in the US to help patients pay for the drug if insurance doesn't, but that is for US patients. I do not know if they have a program for Asian patients. The only information I can find for the Novartis office in Vietnam is
NOVARTIS PHARMA SERVICES AG - REPRESENTATIVE OFFICE IN HO CHI MINH
Company Information
72-74 Nguyen Thi Minh Khai Street,
Ho Chi Minh, Ho Chi Minh City, Vietnam
+84-838239090
Title: Re: starting Exjade
Post by: Dharmesh on March 05, 2015, 07:45:41 AM
Hello,
@Andy, the said weight is 44 lbs which comes to 19.95 kgs i.e. 20kg aprox
So, the initial starting dosage should be 20kg*20mg= 400mgs
@ lyhoang,
follow the rest advice said by Andy.
Title: Re: starting Exjade
Post by: Andy Battaglia on March 06, 2015, 05:15:17 PM
Thanks Dharmesh. Too much trying to get caught up late at night.
Title: Re: starting Exjade
Post by: lyhoang on March 07, 2015, 01:40:53 AM
Thank you so much for the information Andy, Dharmesh! I really appreciated for your respond. It costs my friend $850 per month for the exjade which is a lot of money in Vietnam. I will tell her to contact the company in Ho Chi Minh to see if they can help with her case.

Best Regards,
Lyhoang
Title: Re: starting Exjade
Post by: jay on March 07, 2015, 09:24:53 AM
Hi Lyhoang, you are a very good person you are helping your friend.
There is one pharmaceutical manufacturer from India who sells the same drug for far less price.
I will give you every information and every authorized help to get it there, but in return please give me the one information, what is the average salary of an English convent school teacher? What is the average salary of a medical doctor in the state run Hospital?
You give me this information and I will give you every help we need to help each other.
Title: Re: starting Exjade
Post by: Dharmesh on March 08, 2015, 01:50:10 PM
Thanks Dharmesh. Too much trying to get caught up late at night.
Dear 100 Andybots, Pay sufficient attention to ur health. It is valuable to us
Title: Re: starting Exjade
Post by: Lokkhi maa on April 01, 2015, 05:20:53 AM

Dear all,

My 18 months old baby already taken 9 transfusions.Now I want to know her ferrittin level.Last month I have test her Serum iron and TIBC but not serum ferritin. Which result was TIBC 49.00 mcmol/dl and serum iron 25.00 mcmol/dl.Please advice which test I will do now for checking her iron level...

Best Regards,
Title: Re: starting Exjade
Post by: Bostonian_04 on April 01, 2015, 06:55:21 PM
Hello Lokkhi Maa,

for ferritin, do the serum ferritin test. It is a simple blood test. we do it every month before blood transfusion and look at the average to get an idea. it fluctuates a lot with fever, cold etc.
Title: Re: starting Exjade
Post by: Lokkhi maa on April 02, 2015, 02:30:19 AM

Thanks dear Bostonian_04 :)
Title: Re: starting Exjade
Post by: Lokkhi maa on November 03, 2020, 06:30:25 AM
Hello Andy,

After long time, how r you?

Now my child is 7 yrs old and taking monthly regular transfusion.

After 15 days of transfusion her HB comes 10 and serum ferritin is only 484 ng/ml.

She taking daily 500 mg Asunra.

Why serum ferritin level is low as she takes transfusion regularly! Earlier it was 1000ng/ml..

Now I reduce her dose?

Please advice.. :heartred
Title: Re: starting Exjade
Post by: zahra on November 16, 2020, 07:20:35 PM
In my sons case they stopped exjade for about a month when ferritin neared 300. Resumed when it was high again. Check what your doctor recommends. 
Title: Re: starting Exjade
Post by: Andy Battaglia on November 21, 2020, 08:28:49 PM
Hi Lokkhi,

Is it possible for the child to have an MRI of the liver to check for iron? I don't like to see the chelation dose lowered unless the ferritin reading is backed up by an MRI.