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Lee I wish you luck w eculizumab! My husband was dx Halloween 2012 (trick or treat right?) he has had 6 treatments. He experiences head aches and a lot of drainage. He seems to feel more energy after treatments. Still waiting to see what everything looks like on paper after next blood test results but after 2 treatments LDH came down almost 200 pts! We are looking to be informed and connect w others as well! If you have any questions for us please feel free to ask!
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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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