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Kim, my sister too has PNH clone with AA and has relapsed recently. She just started CsA last week and in her most recent blood test platelets dropped a bit again. I hope the medication will begin to kick in soon and stop the downward trend.
Important things to note are, make sure the Dr is definite on whether you are primarily PNH or AA because the treatment is very different. Seems like standard treatment after relapse of AA is back on CsA without ATG. Looks like most people have a response to this. **Out of curiosity anyone out there take CsA after relapse, how long did it take for counts to begin trending upward??
As for BMT, our Dr always says that should be the last resort and he is a specialist in AA. However if your young and have a sibling match, it is worth researching more. But usually if your transfusion free and medication is helping keep counts stable, your in good shape!
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Bobby, sister dx Mild AA small PNH clone 6/2010; ATG+Cys 9/2010; slow taper 1yr+, counts good until 2/2013; BMB 7/2013 no change in disease. CsA started 8/2013 and counts on the rise.
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