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PNH Paroxysmal nocturnal hemoglobinuria

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Old Tue Jan 22, 2013, 12:32 AM
Heather8773 Heather8773 is offline
Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Feels like starting over

Well we met w a specialist today.

He thinks my husband has been misdx w PNH and has AA w a PNH clone?
He is getting 3 more units of RBC and a new bmb this week.
He thinks my husband should stop Solaris (I think until we have new bmb results he will continue Solaris)
He is already talking bmt and we said we would like to explore ATG first.
My head is spinning... I don't know where to start.
Advise is really appreciated.
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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