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#1
Thu Aug 13, 2015, 10:33 PM
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exjade
im looking to talk about exjade and its ups and downs i have just been put on it and wonder hoe others are going on it?? Aussie danielle
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#2
Sat Aug 15, 2015, 06:07 PM
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My Exjade "relationship..."
Hey there downunder - As we say in this wonderful forum, YMMV and we all seem to have different reactions to the treatments available.
I've kept a detailed record of CBCs including serum ferritin and creatinine levels because one of the Exjade side-effects for me is rising creatinine levels which is bad for kidney function. My doc has agreed that if I can keep ferritin around 1000 it's OK to suspend Exjade for three weeks, retest and see if creatinine has dropped to a lower value. I've done this from time-to-time and have gotten the results hoped for. There are other side effects, but they are manageable for me. Good luck and I hope you have good coverage. This Novartis drug is EXPENSIVE !!! 
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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