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Old Wed Jan 13, 2021, 09:57 PM
Junior48 Junior48 is offline
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Join Date: Nov 2020
Location: New York
Posts: 5
Watch and wait or go for Soliris

Was wondering what the consensus is on watch and wait before deciding to treat PNH with Soliris? My sister has been noticing more fatigue and weakness, although it changes day to day. some good some bad. she doesn't need transfusions and is maintaining on blood thinners at 2.5. Her doctor said its her call on whether she wants to start treatment. she wants to hold off. If anyone has recommendations for increasing energy levels, managing the fatigue, rapid heart beat etc...it is welcomed!
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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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