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Decreased transfusion needs with hydroxyurea in thalassemia major or intermedia

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Daffodils:
Hi All,

I am a thalassemia major, 32 years old, and I got lately 2 times back bone vertebral fracture in 15 months. The spinal MRI showed abnormal bone marrow activity and changing different signals from the bone marrow, as well as some extra cells and something like edema or tumor.

The doctor decided to put me on hydroxyurea and regular transfusion to be taken every 18 days 2 units of blood. I started hydroxyurea with 10mg/kilo/day and currently it is 20/kilo/day

Does anyone of you has any beneficial information for me in this issue as I’m confused about how critical is my case?

Thanks for everyone.

Manal:
Hi Daffodils and welcome to the site

I think that you are in the right track ( regular short transfusion and the hydroxyurea ), but please keep us updated.



--- Quote ---Actually they can be given togather as in the case of a 4 years girl whom i know that developed extramedullary hematopoesis ( spelling..) in the lungs although she get regular transfusion every month. So the hema put her on hydra togather with transfusion but every 21 days instead of 30
--- End quote ---

As for this young girl, using hydroxyurea has helped her and this mass had shrinked in size. That what i was told from her mother

good luck

manal

LoriM:
I have a question.  Wei's (age 3) doctor started her on this and after several months I took her off.  I just was not thrilled with my 3 y/o being on a chemo drug for the rest of her life.  The doctor told me there weren't any side effects, but the drug pamplet said differently. 

Do you think I made a mistake?

Lori

kabir_love:
we had been on hydra also for sometime well we had seen some imporovment in increase in hb but my son pediactric was against hydrea so we cant continue the therepy in peace and we cancel that for that time. but there we had seen many  kids on hydrea and met one of thal. major taking hydera and he is  not taking transfuison now for alteast about 1.5 year. and hb is between 8-9 . as they check it. rest it surely increaes the gap of blood trasfusion what i had seen cauz even my son  hb drop from 9.5 to 7.8 in 2 months gap not less.

rest it depends of some  ++ and + -   facotr as i think mutation of parents and my doctor said its more likely to work with ++  mutation. + -   have 30% chance to work  and  - -  dont have any.

regs
micky

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