[Relentless Against SAA]

Hi,
I am so sorry to hear that you are going thru this difficult time. I recently watched an excellent seminar on the Aplastic Anemia MDS Foundation website regarding PNH and Soliris. The doctor explained that the problem with PNH cells is they lack protection from Compliment which is a part of our immune system. Soliris stops Compliment therefore your PNH cells survive. This is why your LDH is decreasing- your Red Blood Cells are not being broken down as fast as before the Soliris. Your PNH cell number should actually be increasing and your Clone size increasing ( therefore increasing your RBC Count) because these cells are not being attacked by the Compliment part of your immune system. This is also why it is tricky to ever come off Soliris, because your Compliment would kick back in and your RBC be destroyed, lowering your counts to dangerous levels. Please question your Dr about this again. I am wondering if you did not understand his explanation. Is your Dr. a PNH specialist??? If not, I would strongly urge you to see one! This is a tricky diagnosis, as you know. Hardly any doctors have very much experience but it is well worth your time in finding one. I hope this helps and please know that I am thinking about you in this difficult time.