Hi Loretta,
I'm sorry you have developed PNH in addition to the Aplastic Anemia. No, this is not a common complaint to my knowledge of Soliris usage. Are you seeing a PNH specialist? In any case your doctor can check with Alexion for you to see if others have seen their postassium drop.
My potassium has actually been a little low a few times but I haven't tried Soilris yet. Do you know your PNH clone size? Are you on Coumadin to prevent clots? I am but my platlelets are dipping, hope they don't go too low or I'll have to stop the Coumadin.
suz
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AA/PNH Dx 1998, Warfarin, Soliris
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