The sheer number of possible side effects owing to Exjade use is a concern. For me, I've been keeping a close watch on my Creatinine build-up. As with many treatments, Exjade side effects vary considerably. My doc and I have agreed on keeping my Serum Ferritin under 1000. So I've been able to stop and restart Exjade from time-to-time and only have to deal with keeping close to a toilet 15-20 minutes after eating. It's an inconvenience to say the least but I simply couldn't tolerate the Desferal infusion process.
I like to think that the high costs to live with MDS are a payback for all the good work we have done with our lives in the past and in the days yet to come nomatter how many those will be. Good luck Greg.
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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%
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47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).