Thalasemia Major Iron Problems

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Thalasemia Major Iron Problems
« on: December 17, 2008, 08:23:08 AM »
Hi everyone, I'm Jackson from Indonesia.

I'm 20 years old this year, and i've thalasemia major since i was baby (5 months old).

after all of my journey around 5 countries to search some medecine, treatment and all other stuff (at my 5-10th ages). Everything leads to nothing, and i'm starting to use desferal injection at 7th years.

I'm stop to worrying anything about this thalasemia thing and live like normal kid (perhaps i'm too naive).

After the journey my family decided to have my doctor and medical check-up at singapore (but i'm still in indonesia).

Then comes to a few years before now (around 3 years at my age 16 - 17th) I'm sadly realize that i'm not grow like the others do.

My doctor suggest me to go to hormon doctor for injection testoterone, and we've find out that this iron overload can destroy my male hormon (CMIIW).

And yes, the injection works and i'm quite sastified with the result not for long ago... Now i'm in singapore after routine checkup i found out that this iron thing getting annoying.

The Iron overload stuck on my liver quite a lot (forgot the exact number), and i'm injecting 4 bottles of desferal @ 500mg / day since 4 years ago, 6 days a week. And sadly my iron wont go down below 2000, still i'm confused what to do.

And as we know, everything gets expensive day after day, specially if we are from "poor" country like me, not to mention the thalassemia organization in Indonesia are so racist.

The latest price i can get for desferal is S$14 per bottle in singapore, and just yesterday my doctor reffrence me to oral desferal, the price are surpsising me like hell, its around S$60 dollars for 500mg per tablet (singapore also).

Somehow i feel sad about this thing, maybe the injection and tranfussion cant get me down, the price still reasonable and affordable, but to thing about iron removal i'm quite depressed now, i think its too high to pay.

Ah ya, i forgot to mention my last feritin was 9000 (checked last saturday).


anyone can give me some answer please post..

Thank you.

note : i'll add more in Indonesia, i'm glad to find this website btw.
« Last Edit: December 20, 2008, 07:46:55 AM by jlayarta »

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Offline Lyanne

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Re: Thalasemia Major Iron Problems
« Reply #1 on: December 17, 2008, 09:27:52 AM »


  Hi! Welcome to the family .... You've come to the right place. We are glad you joined us,we do hope we can answer all your question... Anyway, as for your problem, maybe you should cut-off on your meat intakes  and other high iron content vegetables.... but normally patients who are thal majors have high iron levels. We just have to maintain it not to overload. What did your hematologist suggest you do? you could do a combination of chelation but it is still your doctor's last say........
LYANNE :yahoo

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Offline Sharmin

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Re: Thalasemia Major Iron Problems
« Reply #2 on: December 17, 2008, 03:43:04 PM »
Dear Jackson,

I understand your frustration.  Perhaps we can help you get your ferritin levels down.  Can you tell me what your pre transfusion hemoglobin is (hg just before transfusion?)  Also, how much blood you get at each transfusion as well as your weight in kilograms?

How many hours a night do you use desferal?  You should be using it for at least 12 hours a night, and now that your ferritin is 9000 it would not hurt for you to be on IV desferal.  You mentioned an oral chelator, do you know if it is Exjade or Ferriprox?

Don't worry, your iron levels are very high but others on this site have been able to bring their iron levels down and together we can help you get there too. 

Sharmin
Sharmin

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Offline jade

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Re: Thalasemia Major Iron Problems
« Reply #3 on: December 17, 2008, 04:48:43 PM »
Hi Jackson
Welcome to the site.  You will have lots of support and advice from our friends.  Hope you succeed in reducing your ferritin as fast as possible. 
Take care
Jade

Re: Thalasemia Major Iron Problems
« Reply #4 on: December 19, 2008, 06:36:23 AM »
hi,

i'm 67kgs now..

you know, its a bit hurt about the desferal price in around here, exjade here in singapore could cost me S$50-60 @500mg, and i've to consumed at least 2000mg/day right?
can you imagine how much sallary i should make for one month?

and yeah, here we must buy it our own... well, in Indonesia only "poor" people can have the desferal for free, and its just only one bottle a day. very very expensive...

everyone here get their medecine from where by the way? and how much?

and do you know any hospital / doctors around my area (Indonesia - Singapore)?

i'll be glad to find desferal or exjade resources ... it's kind frustating me now..


thank you once again.

« Last Edit: December 20, 2008, 07:49:36 AM by jlayarta »

 

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