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Margarete,
Thank you for the research. How did your session go today?
I think that given my age and the low chance of MDS a BMB is not normally done unless you are not responsive to ITP therapy, which is what happened. Thrombocytopenia was my only symptom, there really wasn't any reason to believe it was anything more. After about 3 months of treatment, we did the BMB and then changed to the MDS diagnosis....
I can't really say why my doctor stayed with the steroids for so long. Due to the MDS diagnosis, we began tapering down from 80mg/day in August. I caught the PCP toward the end of the month when I was down to 20mg/day. I had to stay on for a while because of the PCP, finally stopped completely in October/November.
I actually feel the best that I have felt since May - i am currently not taking any medications - although I suspect that will be changing shortly.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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