Advice needed on oral chelator

Hi all... 

i really need your advice on choosing the right oral chelator.  there's so many kind of them & i wonder which is best.
we don't have a haematologist here in my hometown, you see, so i'm really lack of knowledge of such progress in oral chelator.
i really appreciate all the info & advices you guys can give me.. really, on anything.. bcoz i'm kind of confused myself what to ask & where to begin  HELP... pls 
i do aware that i'll need a physician that has specialization in haematology to prescribe & observe the chelator-taking progress, which is not available where i live, but i do plan to seek advice from a haematologist in Kuching-Sarawak on March the 16th.
so i'll need your advice & information on various kind of oral chelator before that so it could help me in considering which oral chelator is possibly would do good for me. and not only that, if there's anything you think i should ask to the physician / get a clear explaination on, pls.. do tell me. bcoz this trip to seek the doctor is not something i can afford quite often, so.. you know, i really do need to get as much as i possibly get from it. 
btw, i just found out lately that i might have Hep-C, though i'm not sure how serious it is. i wonder if someone with Hep-C could have ferriprox / other kind of oral iron chelator?
i really have a serious iron overload here, the last time i check the ferritin was around 16,000 (that was about 6 months ago), i'm quite sure it keeps rising till now. 
so, though i'm intermedia (the last time i got transfusion is about 2 years ago), chelating iron is definitely one big problem i'll have to deal with real soon.
those ferritin drives me crazy!! 

anyway, anything you can tell me.. please, do let me know..  thanks before, guys!

P.S. : You can also e-mail me, thanks.

There are two oral chelators available, Ferriprox (Kelfer or L1) and Exjade. Both require regular monitoring under the supervision of a doctor that understands what side effects to look for and who will know to take the patient off the drug immediately, if necessary. You can read about the recommended monitoring in our thread at 

http://www.thalassemiapatientsandfriends.com/index.php?topic=643.msg4880#msg4880

Many patients using ferriprox also have hepatitis C, but strict monitoring of the white blood cell count is absolutely necessary, because in about 1% of patients using the drug, a sudden drop in white cells can occur. Hepatitis C can also lead to a sudden drop in white cells, and I know of at least one patient where this drop was attributed incorrectly to his use of Kelfer and he was taken off it, leading to a big increase in ferritin levels, which only makes hepatitis worse. Exjade can lead to a dangerous increase in creatanine levels which can lead to kidney failure. These side effects are in very small percentages of patients using the drugs, but because of their dangerous nature, strict monitoring is recommended for both drugs. Please make sure you are under the proper supervision of a knowledgeable doctor before taking either drug.

With ferritin levels as high as yours, the best course of treatment might be a combination treatment, which includes desferal, at least until the ferritin level shows major improvement. This is very important, as long term levels this high will damage your organs, leading to many problems.

Your ferritin is very high for someone who doesn't transfuse regularly, which leads to the suspicion that you have a very high rate of iron absorption in your gut. Please make sure you are following a low iron diet and that you drink tea with every meal, as tea will help prevent iron from being absorbed from your food.

Thanks, Andy, for replying so soon.
the reason i have a very high ferritin level is that i actually brought up with regular transfusion. as i mentioned before, we lack of knowledge about thal, the physician at my hometown is neither has say right conseption about thal or even know it (really, when i'm in my childhood, most of them didn't even heard of thal before). so the only way of treatment they gave me is only blood transfusion. i had my first blood at age 3, and had it regularly till i was 17. it was then my condition had got worst than ever & my family manage to take me to Kuching for treatment & the doc there had to do splenactomy right away bcoz the spleen had been so damage that i was lucky to survive. After that, i'm urged to do the desferal therapy, but it i can't really keep the 5-times-a-week therapy as advice, bcoz we really lack the resources where i live (esp.the desferal in the market is too unaffordable). we manage to find a source though to get it more cheaper but the stock is so limited as well, till now we still in great difficulty to keep the desferal therapy running (esp.now since my pump get broken lately, & i just don't know why the driver is not working).
so you see, my ferritin is really worrying me..
the problem with oral chelator, i guess, is we don't have any specialized person who can monitor the progress in my starting on the drugs. it's impossible for me to stay in Kuching while taking the drugs, while in my town we don't have any haematologist. can any other physician do the monitoring? if it can't do, i guess i have no chance try having a shoot with the oral one, don't you think? 
any advice?
do you think it's possible for me to take the oral iron chelator in such condition?

Dear Yenny

Which doctor are you seeing in Kuching? I think Exjade is not yet available commercially in Malaysia but L1 could be around. Exjade is not cheap and currently, the majority of the Thalassemia patients is still using desfaral. Desferal is provided to chilrdren patients free of charge by the General Hospital.

Thank you.

Hi Omega, 
yes, i guess the only available & possible to get is ferriprox, isn't it? what bout you, do you have any experience with it?
i was seeing dr. Bibiana Teo in the first place. she's a paedeatrics (while i was too old seeing a peadiatrics), even so, as far as i know, she's one of the member in the thal patient board in Kuching, so i think she's quite well knowledgable on thal. but i've also learned that there's already a consultant on haematology in Kuching now, if i'm not mistaken his name is dr. Lau Lee Gong, he practices in Normah hospital clinic. i'm considering if i should go see him there. 
do you know one of the physician i mentioned? can you advice me on them? or maybe you've been seeing some other experts i never heard of before?
btw, as far as i know, your general hospital there has a regulation that it only provide its services to people in their own nationality, so i guess it's not possible for me to get any of those what you've told me back there. but thanks anyway for your information, at least it's made clear that indonesian still have a lot to catch up with, really..

Dear Yenny

Sorry for the late reply.

All the Thal patients are seeing doctors in the General Hospital. Desferal is only available free of charge to Malaysian citizen only. In fact before the Government is providing desferal, the sarawak Thalassemia Society is subsidizing the cost of purchasing the desferal. This has save a lot of children in Sarawak from being iron overloaded.

Thank you.