Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: anjjela on September 14, 2008, 07:42:36 AM
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hi to all thalpals :wavey
im angela ali, 23yr old from agra, the city of taj mahal (india)....im beta thal intermedia...gone thru splenactomy at the age of 13...which helped me a gr8 deal...im doing fine now and receive blood transfusions in 2-3 months time or if i get infections n hb drops to less than 6.5 then transfusion is a necessisity. i guess the infections tht i catch is due to the low immunity system bcoz of splenactomy....recently my ferritin tests show 1350...got my dna analysis done as well n i have Haemoglobin E with mutation...n haomotologist has suggested me to take HYDRA...if anyone takes this medicine pls do let me know if it works for u.....i have no clue whether it wud help to maintain my hb...but the doc said it might help raise my hb to 1 unit....i have to wait for 3 months n see the results......
other than thal history........im an artist :biggrin love to paint n listen to music....i've completed my bachelors in fine arts...
n now i do freelancing...n exhibit my work as well:)
really happy to have found this site whr i can meet thals n share thoughts n queries with them....
luv n regards
angela :stars
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Hi there!
:welcome to the group.
Nice to know a bit about you.
There are a couple of members taking HydroxyUrea (a.k.a HU and Hydra) here on this site. It's a fetal Hb (HbF) inducer which might help you go longer without or totally eliminate transfusion for you.
I hope HU users will respond to all the questions that you have in mind and I'm sure you will get a lot of valuable information about it from our resident hero and expert Mr. Andy :biggrin
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:welcomewagon :welcomewagon
:welcome WELCOME :welcome
TO THE SITE ANJELLA ..
i hope you will find this site realy helpful
& you will find Answers of all your questions
here on this site .. soo .. dont hesitate to
ask anything ,that you want to know about.
.....
Best Regards
Take Care
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hi sajid n nice friend
sajid....thanx a lot for informing me abt hydroxyUrea....as im a new user of this medicine...i really hope it does have an effect on me if it helps raising hb....n ya i've read andy's posts as well....he's seems to have very wide knowledge on thal :)
nice friend....thanx for the welcome...im sure i'll b comfortable to discussions n learn more abt thals here on thalpals :biggrin
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Welcome Angela,
We are happy to have you as a member! We hope you find a lot of good information and great friendships here:)
:welcomewagon
Sharmin :hugfriend
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Angela hi,
welcome to thalpal.do share your experiences with hydroxyurae.all the best.
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hello sharmin n sah,
thanx for the warm welcome :ty im sure i'll get a lot of information here...n ofcourse gr8 frndships tooooo :grouphug
n yes sah....i'll definately keep all of u updated wid my experience of HydroxyUrea :medicine
take carezzzz
luv n regards
angela
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Hi Anjjela
Sorry I missed your post. I think I am spokes person for Hydro oxy urea(Hydrea) for this forum. it is good tht your Dr has suggested it. If you read my previous post you wil know tht my son has been using it since he was 2.5 and now he is 8.5 . So basically 6 years, the dosage has been increased with age. his growth touch wood so far has been normal. No side effects for this drug till now. God has been kind.
For my son, splelenctomy was carried out on july 22. So for almost a month hydrea was stopped. We have started it almost a month back.
I can just tell you think positive and try it out. If it suits you well and good, if it doesnt well we have the good old transfusions. Also you are in India, it is easy for you to get fresh wheat grass juice. Please drink it twice a day, it is very good. Immunity will also increase.
Lastly just be positive and happy. Everything will be great.
God bless
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hello Anjella ,
check this link , i think it is usefull for you ....
http://www.thalassemiapatientsandfriends.com/index.php?topic=1207.0
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Hi nice friend n poo gill....n all thal pals :hithere
nice friend:thnx for the link on hydroxyurea :smiley
poo gill: You missed my post n i missed to reply...hehe :biggrin
well i didn't have a net connection for long so cudn't keep myself updated wid thal pal..but now im back :laughspit
thanx a lot for informing abt hydroxyurea...n happy to know its helping ur son :clap
well i will be on the lookout for wheat grass here in india....im not sure where will i get it.
now tht 3 months of taking hydra r complete i got my blood tests done
though i had a transfusion before starting hydra....(My Hb was 6.5 n wid transfusion it must have raised to one more unit)...n now my Hb is 6.9
Ferritin 1390.0 ng/ml
i have mailed my blood reports to d Dr. who has now advised me to have 2 capsules of Hydra daily....n get my blood tests done again in 2 weeks...
He said i have to keep a check on WBC count n neutrophils n if there is a decline in these then i have to hold it.......
im a little worried abt Ferritin levels.....any suggestions?
luv n regards
angela
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Hi Anjjela
Good luck in usig the hydrea, it is given up to one year to determine if is effective or not so patience is important. As for ferritin. it is not so high but using a combination therapy is the best in having a quick and effective chelation
manal
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Hi Anjjela ,
GOOD LUCK for Hydroxyurea experience :thumbs ... :goodluck ....
wat Manal Said i totaly agree to her , that ,your ferritin is not tooooo much high but its high , A little bit ....
and as she said Combination therapy is the best and effective more than any other treatment , as i have experience of it .... Wishl You All the best of luck for the treatments you are getting ...
Take CAre
Best Regards
Umair
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Hi nice friend and manal
thanx for informing about ferritin...
Well its been more than 2 weeks now after my blood reports on 1st of Jan.....which tells that my ferritin level is now 1553...surprised to see it rise from 1390 to 1553 in 2 weeks...
i was taking Hydra 2 tablets a day and im not sure if the increment in the dose of hydra has shown such increase in ferritin... :shy my hb has lowered to 6.5
Now when i consulted the Dr....He asked me to go for a BT if i am short of breath or feel dizzy....
He also reduced Hydra intake to 2 tablets on monday-wednesday-fridays and 1 tablets on all other days....plus he prescribed me a new medicine called Asunra..30mg/kg/day....its an iron chelating agent...n after a lot of search i got it today finally couriered to me from another city by a chemist....so today was day 1 for me to have this medicine..
I think mayb Hydra is not suiting me or on the other hand as everyone says...i shud be more patient :scratch
luv n regards
angela
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Anjella ,
as you mentioned that your ferritin rose up from 1390 to 1553 in two week ,
1390 is this test was done before BT ?? if yes thenits nothing serious bcoze every pint (blood bag ) of 250ml contain's 250mg iron , so this could be a reason behin this hike of iron in 2 weeks ( as you sai two weeks but i would like to say it rose with the BT ) ...
Asunra :
as you mentioned, yeah its an oral iron chelator by novartis , in replacement of desferal .
its a well known chelator ... WISH YOU ALL THEBEST OF LUCK WITH IT ...hope you will get the most of its benefits and your ferritin will come in normal ranges very soon ....
Best Regards
take care
Umair
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Hydroxyurea (hydra) takes well over a year to show maximum results.
Exjade, Asunra, Desirox and Osveral are all the same drug, Deferasirox. It does take some time to see ferritin drop with Exjade, so be patient and don't use anything metal to mix it in or with.
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Hi
Please be patient about the hydrea and as for Asunra, it is normal that ferritin comes up while using it before it starts decreasing. We were just discussing it in another post, it will be a good idea if you have a look at it
http://www.thalassemiapatientsandfriends.com/index.php?topic=2517.0
Good luck
manal
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@ nice friend : well i do understand tht there is a rise in ferritin coz of BT...but i had my last BT on 12th september 2008...n i started taking Hydra from the next day...i.e, 13th sep
so since then i didn't go for a BT...but now as my Hb is 6.5 i may go for it soon
12/09/2008 ferritin: 1380
13/09/2008 " : 1390
01/01/2009 " : 1553
i was a bit confused as to why is this rise in ferritin level though i didn't go for any BT since 3.5 months now...but as manal said it might have raised due to Hydra :scratch
@ manal : thanx for the link..it was quite useful to read abt Asunra/exjade.
@ Andy: thanx. i'll surely be more patient with Hydra n Asunra...and im glad to know that it is not suppose to be mixed with any metal...it wasn't mentioned in the leaflet
luv n regards
angela :wink
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Anjjela,
You have to be aware that there is Iron absorption in thal(intermedia), so you might want to avoid food rich in Iron. Also, it would be a good idea to drink tea with your meal to decrease the iron absorption through the gut.
For reference:- http://www.ncbi.nlm.nih.gov/pubmed/90918
Iron absorption and rates of iron accumulation were analysed in a group of patients with beta-thalassaemia intermedia. Iron absorption was strikingly increased and there was a progressive iron loading with increasing age. Balance studies indicated that by the time many of these patients reach the third or fourth decades their total iron loads may be of a similar magnitude to those of transfusion-dependent beta-thalassaemia homozygotes. If these patients are to be protected from cardiac, hepatic, and endocrine complications of iron overload in middle life it will be necessary to reduce gastrontestinal iron absorption, starting from early childhood.
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Hi Anjjela
I am happy that you find the link helpful but there is just a misunderstanding here
but as manal said it might have raised due to Hydra
i diidn't mean that hydrea will cause this elevation, i only meant to e patient with hydrea.
As for the ferritn, did you have any infection at that time?? The reason for this is that infection causes a rise in serum ferritin. The best thing is to always have the test when you are clear from infections and also take an average for several readings
manal
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Fluctuations in ferritin are not unusual, as ferritin levels are also related to the body's defense system and the level will raise in no relation to iron load, when one is sick with infection, as viruses and bacteria thrive on iron, so the body moves iron into serum ferritin to deprive the infectious agent of iron. As Narendra posted, you should also be trying to minimize dietary iron intake, and drinking tea with meals is a proven method for inhibiting iron absorption.
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@ Manal : i got ur point...it was a mistake...Hydra cannot be the reason
but i didn't get infected in this while too :scratch
@ Narendra and Andy : i became a member of thalpal abt a few months back and since i read about the iron absortion then itself, i reduced iron intake in my diet. i also included tea but not with every meal i had...or i should say i use to have it with meals when there was red meat included...mayb then the diet is the reason for the sudden rise as i can't find any other reason.
no infections...no BT...nothing
i hope Asunra helps me out with reducing the ferritin levels.
luv n regards
angela
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helloozz
i went for a blood test yeaterday n came to know tht my Hb is 7.1 now without transfusion :happydance
though my ferritin level has also shown rise to 2108...now i think its only due to Hydra... :bat
but like i said im now taking Asunra for tht......
i mailed my reports to the doc n he said the reports r gud :grin
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hi anjjela,
so happy for u.continue with exjade............have patience.
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GOOD LUCK ANJELLA ,
hope that asunra would work for you ...
Umair
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hey sah n umair...thanx a lot for ur gud wishes :shy
i've been taking Asunra for 15 days now...n on 12th day i saw these tiny red spots on my arms...later noticed they are there all over me..I wasn't in town so couldn't even ask my doc or any thalpal member what to do now...after 15th day its much more and i don't know whether i should stop Asunra if this worsens :(
angela
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The rash is the most common side effect of Exjade and the equivalent drugs like Asunra. It usually lasts about a week to ten days and then clears up. The drug only needs to be stopped if the rash gets quite bad and even then in most cases, it can be resumed once the rash clears up. Only in cases of a severe allergic reaction does Exjade have to be stopped completely. Using a low starter dose can help prevent the rash.
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Hi,
I don't know if tiny red spots can be counted as rashes,but you can try lowering your dose of Asunra to check if they go away.
What i wonder is,if this is the side effect of Asunra,shouldn't it have shown immediately after starting Asunra? :dunno
Zaini.
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Hello Andy and Zaini
Thanx for quick replies...
Zaini : there are no more tiny spots...the enitre arms are red now...can't even call them spots now...they are like patches :(....and itching a lot..though i am holding myself back from scratching the rash as im scared it will make it worse....
im scared if i'll be able to tolerate it for so many days...though i'll try my best
angela
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Angela,
What dose are you taking and what is your body weight?
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Hello Andy
Im taking 1400 mg(3 pills of 400mg and 2 pills of 100mg)....my weight is 47kg
last night i had a bad sleep because the rashes were itching a lot...they are better during the day but at night they get really bad.
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Hi Angela,
Your reaction is common when the initial dosage is the full recommended dose of 30 mg/kg. We have been advising patients for a long time to start on a lower dose, no more than 20 mg/kg, until the body gets used to the new drug. Patients who have followed this have had far fewer and less severe rashes, and over the past year, we have seen that many doctors are now recommending this to their patients. If the rash continues to be a problem, try cutting your dose in half until the rash is completely gone and then raise the dose back to 1400 mg daily. If the rash gets worse, you should stop Asunra until the rash is gone.
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Hi Andy,
Thanku for the advice...i guess that would be the best thing to do...cutting the dose into half so that i can tolerate it...i hope that works
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Andy,
Little Z has been taking only one pill of 400 mg,her weight hovers around 27-28 kg,i'll get all the necessary tests done when she finishes her first month,if the tests come back normal do you think that it's ok to switch to 600mg?
Zaini.
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My Doc asked me to stop taking Asunra n then resume taking Asunra after a week...
so i got my blood test done on 30th jan....with Hb 7.1 n now its 6.8 just in a week:(
my serum ferritin level is the same at 2000...
now today morning i took Asunra..but it is already started irritating me....guess its not working with me:(
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Angela,
The rash does not mean that Asunra isn't working. It is a very common side effect of Asunra (Exjade) and usually disappears within 7-10 days. Danielle also had a bad rash and stopped until it cleared up. She was able to resume once the rash is gone. Did you cut the dose in half when you started again? I have known of one patient who could not use Exjade because the rash was so severe, but in most cases it does clear up. Have you used kelfer previously?
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Hi Andy,
i started having the same dose yesterday...but im going to cut the dose into 20mg/kg from tommorrow...n see if that doesn't react so much.
After an hour of having Asunra it starts itching all over my body...which is very irritating n i can feel the heat inside n then the patches also reappear...it gets better in a few hours n then again it starts itching at night:(....it seems to b a very strong medicine....im having more fluids now..thought that might help a bit too
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Itching, interesting. I have gets only the feeling that my feet are sleeping. There starting to tingling in an hour and it comes from time to time back during the day. I never had it before without any reason.
Good luck with the new dosage!!!
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Anjjela,
Cutting the dose is the key,i hope it will work for you,once rash is disappeared you can gradually increase your dose.Good luck.
Zaini.
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Angela,
This is the information from the Novartis site concerning the rash.
http://www.pharma.us.novartis.com/product/pi/pdf/exjade.pdf
Skin rashes may occur during Exjade (deferasirox) treatment. For rashes of mild to moderate severity,
Exjade may be continued without dose adjustment, since the rash often resolves spontaneously. In severe
cases, Exjade may be interrupted. Reintroduction at a lower dose with escalation may be considered in
combination with a short period of oral steroid administration.
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helloooz
Andy n Zaini baji thanx a lot for advicing me to cut down the dose of Asunra...i did so the very next day...n took only 20mg/kg...n its working :wink...im not having a rash now...n no itching either :thumbup....n thanku for the link Andy..though its a bit scary to go through it.. :noway
Peartree girl : ya it was an itching rash tht i had for sumtym as a reaction..n the tingling u felt under ur feet is wht i felt only the first 2 days when i started Asunra...but never after tht :jumping
i don't know if i should start taking 30mg/kg soon...or wait for sumtym :idunno
love n regards
angela
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Angela,
I am glad that low dose is working with you,i think you should keep going with the low dose for a month and then switch your dose to 25 mg/kg.
Zaini.
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thanku for d advice zaini baji...i'll follow it...hope this helps
one thing which is bothering me is tht i didn't go for any other tests like now i got to know abt sum serum creatinine, liver function, proteinuria and auditory & opthalmic tests....some of them i guess were suppose to be done before initiating the therapy:shy
angela
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Angela,
You should be checking at least Serum creatinine and SGPT levels regularly,as Asunra can effect liver and kidneys.
Zaini.
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Hello Zaini Baji :hugfriend
Thanx a lot for advicing these tests...i'll get these done
love n regards
angela
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Hii all
just got my blood reports :
unit normal range
Hb 7.8 gm/dl
Creatinine 0.41 mg/dl 0.50 - 1.20
S G. P. T(ALT) 134.38 U/L 0.0 - 40.0
Serum Ferritin 2,661 ng/ml
i don't know much about Creatinine and SGPT........Hb is better and ferritin has raised much higher..
i guess having half a dose of Asunra is not helping reduce or maintain ferritin levels...should i get back to 30 mg/kg again...scared of reactions :-\
angela
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Angela,
What dose are you taking right now? Ferritin takes a bit long to go down,if you want to increase your dose,do it gradually,like if you are taking 20 mg/kg right now,don't jump directly to 30 mg/kg,instead start with 25 mg / kg and stay on it for a month,then increase your dose to 30 mg/kg,thats how i hope you'll be able to over come those reactions you faced earlier.
As for ferritin,you'll have to be super patient :) .
Have you talked with your doctor about your SGPT level,its high and you should be monitoring them every month.
Zaini.
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Hello Zaini Baji..
im taking 20 mg/kg/day right now...but ya im concerned about these raised numbers.. :noway
i guess tht would be a right way to increase the dose gradually...so i'll start with 25mg/kg..
i just mailed my reports to Doc..n waiting for his reply...
The only thing which is bad in having a doc so far away is u can't put up a lot of questions and thus im scared of mailing him for even the important ones... :shy
i can be super patient with ferritin if im assured tht it will eventually cum down..so far its rising in big numbers everytime i see my reports :quiver
regards
angela
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Angela,
Are you mailing your reports to doctor Tahir Shamsi?
Ferritin will eventually come down,this increase in numbers mean that iron is being extracted from your organs,after being extracted it comes in blood stream that's why a blood test shows high numbers,once you reach your full dose,Asunra will be able to chelate it from your blood,and you'll see a down ward change in ferritin level.
Zaini.
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yes zaini baji....mailing them to Dr. Tahir Shamsi.
wht u said about the extraction of iron from organs...gives me a relief now :yes
thnx
love n regards
angela
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Angela,
Raising the dose by 5 mg/kg per day is the correct approach. Once you have verified that you can tolerate 25 mg/kg, you can raise it to the target of 30 mg/kg day. Once are using 30 mg/kg you should see some progress.
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Angela,
Please ask your doctor how to differniate whether the increase in the SGPT is due to asunra or the hydroxyurea as i remember that you have started both of them at the same time
manal