[m mindas]

Hello! I wanted to point out an observation that I have found since starting my Soliris medication for my PNH on May 18th 2010. Prior to my Soliris,I was having a very difficult time accepting platelets. My counts would hardly go up- if they did at all. Since I have started my Soliris, it has not only helped with my hemoglobin counts and my fatigue--It has helped with my platelets! I am still transfusion dependent, but now I can get my counts up to 70 or 80 with one bag! That means less transfusions overall. I have had 6 weeks of good platelet transfusions. I know this is not anything that is advertised with Soliris, but it is a great side effect for me. My doctors have said that it is possible because of there being less hemolysis of the red blood cells (?). When I jokingly asked about a clinical trial for the platelet and Soliris connection, the response was that Soliris is soo expensive already and platelet refraction was not that important for a clinical trial. All I know is that while I was bleeding in the hospital from several orifices and a platelet count of 5 after two bags --I would have appreciated another option. I got lucky and finally got a bag to bump me up to 50, but there were some dark days and I am grateful to have stumbled upon this. I hope someone will check this out as I think it will help those of us who are alloimmunized. Has anyone else experienced this??