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If you do end up needing treatment just make sure it is done at a center by a Hemo Dr. who has experience with this disease. Administration of the medicine and monitoring of side effects is critical. Keep in mind Horse ATG + Cyclosporine has the best response rates, with a slow taper of cyclosporine months later.
If your not aware you can visit aamds.org for more info, it is very helpful. Also, Dr. Neil Young at the NIH in Maryland is one of the world's experts on this disease so fish around the internet for some of his articles.
Most important thing is to do your own research, ask lots of questions, take lots of notes and make sure your Doctor knows what he is doing.
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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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