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Old Fri Apr 9, 2010, 12:21 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Julianna,

Why do your doctors say that you have MDS and not AA now? Did your BMB show increased blasts or cytogenetic abnormalities?

Since you had such a great reaction to immune suppression the first time, is your doctor's considering a trial of Cyclosporine alone to help bring up your platelets? I remember seeing a video on the AA&MDSIF website that showed that in immune mediated AA, the rogue cells remain in your system (but suppressed) after Immune Suppressant Therapy. If they have grown in number again over the years, perhaps you just need to knock them down again??

I was diagnosed with a morph between MDS and AA and have had a good response to immune suppression. My counts are still low but on a steady slow rise. I am still on Cyclosporine, which my doctor thinks is helping to "retrain" my bone marrow.

Keep discussing the possibilities with your doctor now, rather than waiting until you become transfusion dependent. I've heard that left untreated, immune-mediated bone marrow failure can lead to further stell cell destruction. So, I get nervous with the watch and wait approaches if there is the possibility that it is an auto-immune disorder! Did your doctors see something in your BMB that makes them think it isn't?
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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