Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Zaini:
Thanks for your concern guys :hugfriend We finally got desferal after one week,desferal availability is becoming an issue,i believe i hv told you guys earlier,that we don't buy packed desferal from novartis,the one we buy someone told us comes from Iran,there is a big difference in cost,if we buy through proper channel :) per vial costs 185 rupees,although the open one costs per vial 80 rupees,and thats a huge difference,there are lot of people who are buying this desferal,because so many of them can't afford packed desferal,i have seen parents with 4 thal kids,just try to figure out how would they even affore desferal let alone Asunra.
The cost of Asunra is another matter,but i assume that my daughter is very young and we won't have to use much larger doses,so we'll manage it.My worst fear is that what would happen if my daughter won't be able to tolerate Asunra,then we'll be bound to use desferal.Lets hope for best.
Zaini.
Canadian_Family:
Hi Zaini,
I feel for parents with four thal major children.
I read your posts, you can start Asunra anytime at any level of ferritin. However, please make sure Zainab drinks lots and lots of water with it (please see my post in iron chelation board).
I do hops she tolerate Asunra well.
Zaini:
Thanks Canadian Family,
I have some concerns i am worried about,she spends almost half her day in school,what if any reaction happens there and she isn't unable to understand what's going on,and who'll remind her to drink lots of water there ???.I just keep praying that everything will turn out fine.
Zaini.
Zaini:
Guys,
Not a very good news,my daughter will be tranfused tomorrow after 4 weeks ,and her pre transfusion hb came back 9.1.While last time it was 9.9 after 4 weeks.i know i said last time that we should wait for another transfusion before reaching any conclusion with carao,but i feel like i was expecting more then i should.i'll keep giving her carao,we have ordered 4 more bottles,so i am gonna finish them as they don't have any side effects,but let's see if it can make any difference again.Right now we'll have to go back to three weeks routine,with which my concerns were that if er transfusion requirement kept increasing l,ike that,soon she'll be on two week routine and i don't like the sound of it.Lets hope and pray for best.
A special thanks to Lloyd who gave us the chance to try this new product,it was very kind of you :) .
Zaini.
Sharmin:
Dear Zaini,
I don't think that Zainab's transfusion requirement will be every two weeks, 9.1 is not too bad for 4 weeks. Sometimes there is an element of error in blood tests. A few weeks ago, when they were trying to lower little A's hg for a special test - after 6 weeks his first hg came back as 85 and two days later it came back as 90. There is an element of error, so don't worry I am sure it will be fine:) Keep doing the great job that you are doing, I honestly don't think that there is too much hemolysis going on or else her hg would be lower. I hope that her hg is higher next month:) :hugfriend :hugfriend to you and your lovely children:)
Love,
Sharmin
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