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Aa & Pnh
Suz - my doctor at MD Anderson seems to be familiar with PNH, but I'm not sure he's a specialist. My potassium is actually going too high rather than going down. I have contacted Alexion and they haven't had any complaints about rising potassium from other patients. I do not know my PNH clone size and I'm not on Coumadin. Did I read your bio correctly, that you were diagnosed in 1998? Where are you treated?
Loretta
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Loretta diagnosed AA 8-17-05; treated with ATG in Aug 2005 and again in June 2007; currently on cyclosporine. Diagnosed with PNH May 2007; currently on Soliris
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