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Hi Marlene,
How often did/does John's doctor test for creatinine and FE? We started taking cyclosporine 4 months ago, and exjade 2 months ago. The counts as of 7/7/09 are: 921 ng/mL Ferritin, and 329 mcg/dl Iron and we only started monthly ferritin tests in 5/5/09 (it was 2270 back then).
Our first test for creatinine was in 6/8/09 and it was only 1.3 then. In the span of 1 month, it apparently increased from 1.3 to 2.8, and it probably increased further in the weeks following until we finally stopped taking cyclosporine yesterday.
I should have asked for more frequent tests, but the doctor didn't seem to think it was a big deal. Since we're still taking 1000mg exjade daily, I'll ask for a new test when I see the doctor in a few days.
Thanks,
Steve
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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