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Old Sat Aug 24, 2013, 07:41 AM
marmab marmab is offline
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Join Date: Jul 2011
Location: Massachusetts
Posts: 67
Even though I am a hypo MDS/AA overlap case, both my regular doctors and second-opinion doctors feel that I am more in the SAA camp and are treating me as such. They all recommend BMT soon (I am really on the fence about it), but that is another story.

I am one of those people in whom ATG/CsA triggered hemolysis. Discontinuation of CsA, and administration of rituximab and prednisone stopped the hemolysis, and my hemoglobin rose to the mid-10s (highest # in years!) and has held there since 10/12. I have had four-week rounds of rituximab four times total in the past year, to try to "rein in" my immune system (B cell activity plays a role here?) when I have had autoimmune "episodes" (we think) out of the blue that make my plts plummet. The rituximab enables me to go a bit longer between plt tx, from every three days, for instance, to 8-11 days, which is particularly helpful as I need HLA-matched plts. That said, when I receive rituximab, I also usually get prednisone, so it's hard to say exactly what is going on biochemically, but I can't help but think that B cell activity does play a role in this disease. Basically the rituximab seems to work, but unfortunately not for long -- a month or two after each round my plts tend to bottom out quickly again. I am aware that many doctors feel that rituximab is not efficacious in the treatment of AA.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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