Discussion Forums > Thalassemia Major

what has been happning

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Alia:
hi everyone
my daughter sara is having puffy face and her iron is nearly 3000. we are giving 250 tablet of exjade everyday and it seems like it not wrking on her. plz can anyone tell us whether we should increase the dosage for her or start with somthing else.she is taking exjade for 4 monthes now.can canadian family anyone else help us plz
thanks alia

§ãJ¡Ð ساجد:
Hi Alia,

It takes time. What is the trend of the S.F levels? Are they hovering around at a particular level or increasing/decreasing?

Andy Battaglia:
Alia,

What is your daughter's body weight? The Exjade dosage is determined by body weight.

Canadian_Family:
Alia,

Andy's question is very important. To put things into some perspective, my daughter is taking 375mg daily (7 days a week) and she weighs 38lbs. It took her seven months to bring the S.F from 2400 to 1600.

Please note the proper dose for her weight is at least 500mg, but she is restricted by doctors because of her age. (please note currently exjade is not prescribed to children under six in Canada but my daughter cannot tolerate desferal and she got special permission to get exjade).

Sharmin:
Alia,

I hope that your daughter's iron decreases soon.  I have also heard that it takes some time before ferritin levels decrease after beginning Exjade.  I hope you figure out a good dose for your daughter.  My son will begin his exjade/desferal combination therapy this week.

Andy, is having a puffy face a side effect of Exjade? 

Thanks,
Sharmin

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