Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: zs on January 20, 2010, 02:08:15 PM
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hi all
my heart t2* test show 8 and its not good
my frettin is not very high( 500 ) but the iron sediment in my heart
what u think is best way for make that better ?
I know that using deferiprone can help but coz of hep C I cant use that.
what must I do?
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Desferal 7 days per week for a minimum 12 hours daily, raised Nur's T2* from 8 to almost 14 in one year. You have to be totally compliant with the 7 days per week schedule and also have to have patience, as it takes some time to reverse, but the good news is that the ferritin can be lowered and the heart will return to normal once the iron is removed.
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hi and tanx andy for reply but use 7 day desferal is so hard :whew
how long must I redo my MRI test ?
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hi
as I say my heart T2* test show 8 and coz of hep C my Dr say not use deferiprone( L1 )
but after see my last test my Dr let me use deferiprone
I am using both esferal and L1 wat is the best way of combination thearapy with those?
I am using 8 pil of deferiprone (500 mg )per day +( (5 desferal in 12 cc water) and use 5 day in week )
what do u think about that?
(my anti HCV was reactive but in PCR HCV Quantitive . . . . . . . Not detected )
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I would say you should be taking desferal 7 days per week until your T2* is well above 10. I need your weight to advise you on L1.
Please be constant with your chelation and you will see your heart improve, but be patient. With full chelation, one half of heart iron should be removed in 17 months. It takes time but it is worth the effort because it really does work.
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hi
tanx andy for ur reply I am about 48 kg and my doc prescribe desferal 4 night in week and 8 pil of L1 each ay
I try to use that for 5 night in week with 5 vial for each time is it ok or I must countinue as Dr say ? my Dr say 4night with 4 vial for each time .
I use 8 pil of deferiprone
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Hello zs,
For your weight your dosage is 7(min)-9(max) pills of deferriprone which means that 8 pills of deferiprone is o.k. As for desferal 4 vials per 4 nights that your doctor has said is not much, so what you suggest 5 vials per 5 nights a week is much better than what your doctor has said. Stick to your plan and keep an eye on your ferritin levels.
You said something about Hep C. Are you on a therapy with interferone and ribavirine?
Because in case you are , deferirpone is not suggested.
Lena.
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hi dear lena
tanx for ur reply and I am not on therapy with interferone and ribavirine right now I do that last year and I stop that coz of thats side effect so discountinue . I use 6 peginterferon and some ribavirin pill an after downfall of my ca ,mg,na and other and have bloodshed of kyte I stop treatment after that I do PCR 2 time and in both HCV Quantitive . . . . . . . Not detected and last result of my test
AST 18 (up to 31)
ALT 12 (up to 31)
so my Dr say dont need treatment now? yes I cant use L1 in that durationbut now I use
what you think about that?
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As long as you are not on Hep C therapy, you can use deferiprone which is heart protective. I would do as I have told you in my previous e-mail: 8 pills of deferiprone and 5 vials of desferal for 5 nights a week are o.k. Keep on that program for some time, monitor your counts and your ferritin and you will see good results.
Lena.
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thanx dear lena I try to keep on my treatment as best as I couldd
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don't give up it will be better
thalassemianme.blogspot.com/
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tanx from all