aa and pnh
Hi, I have posted here before but not in a while. I have had aa for 5 years and about a year or so ago started to show that I had the pnh clone. It is now up to 40% and I started soliris 2 months ago. I was on 100 mg of cyclosporine a day before the soliris and my counts were low but stable and generally I felt pretty good. Since I have started soliris my counts have gone down and I have needed transfusions. Luckily my ldh is normal now thanks to the soliris but I am pretty certain at this point my blood counts are not going to get any better, and will be needing more transfusions. So can I ask if there are others out there in the same boat as me, what kind of treatment has been successful for you? My doctor does seem to think that maybe the reason my counts were more stable before the soliris is because I had so many pnh cells, and I might possibly start going three weeks between soliris treatments to balance things out. any thoughts or advice would be appreciated. Thanks
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