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SAA Mom
Sorry y'all are going through this my husband has both as well. Pnhdisease.org has good advise for PNH pts. It's a forum like this one.
What is your sons clone size? What is his LDH numbers? Both important to know and keep track of. PNH is very controllable w Solaris. Don't be concerned about cost if you google it. A nurse case manager through alexion will help guide you through financial aide and most ins approves it bc it is currently the only drug available. The biggest concern w PNH is if it's allowed to run rampant w/o treatment (this was confirmed at an aamdsif conference see my "if your on the fence w Solaris " thread). Good news your son has only a small clone bc he is at a point to where Solaris could prevent clots, long term high level hemaloysis (causes the most damage).
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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
Last edited by Heather8773 : Tue Aug 20, 2013 at 12:04 AM.
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