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New to pnh
My husband has recently been dx with PNH.
Looking to connect with others! Any advise is appreciated!!! He has had 6 treatments on eculizumab (Solaris). Anybody know of a Pnh specialist in Houston? We have an amazing hematologist and his staff are so sweet but we are only his third case. Any advise on how to get platelets up? His are 17 (and have lowered from 21 in 4 wks) how to get WBC up?
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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