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Old Sun Nov 15, 2020, 06:41 PM
Junior48 Junior48 is offline
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Join Date: Nov 2020
Location: New York
Posts: 3
PNH Clone increase/treatments/symptom mgtm

Hello, sister, 27, mild AA since approx 2010. ATG in 2011, cyclosporine since then. PNH clone increased (i think about 60%) now. Now on high dose blood thinners, no soliris treatment yet. not transfusion dependent.

Questions are, monthly female cycle and high dose blood thinners wipe out iron levels, any recommendations on management (besides iron supp)? Has anyone taken the newer drug, ultomiris (ravulizumab) from the same pharma company that produces eculizumab? is this really an indefinite treatment, has anyone successfully been able to discontinue it? this might situation dependent, but are major health insurers covering majority of the cost?

From what i gather, once a patient makes the cross over from AA to PNH they dont typically regress back and will have to manage the PNH from there on out?


any other feedback appreciated. thanks,
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JR, sister dx with AA 2010; ATG 2011; PNH clone increase in 2019[60%]; current treatment; blood thinner/Cyclo
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