[ussoccer004]

Hello guys, I had some questions and concerns and from the veterans who have gone through this already any feedback is greatly appreciated. I have PNH already and my ANC is constantly .5 with a WBC of 1.9-2.1, Hemoglobin is at 10 and platelets are at 130K. My lymphocytes stay around .8.

I have talked with my doctor and have gone to the NIH about my condition, they believe it all started because of the EBV (epstein barr virus) and turned into autoimmune aplastic anemia. I respond well to Prednisone which bring my counts into the normal range and currently I am on Soliris which has been a miracle drug in my perspective and what I was dealing with before Soliris.

My fear in starting ATG+ Cyclosporine is the JC Virus, which I am reading a majority of the population has the virus but due to a healthy immune system lies dormant. We are wanting to try ATG+ Cyclosporine to bring my counts into normal range again and see if I maintain these counts.

I have read of patients with worse ANC of .2 and .0 going forward with ATG, minus the side effects of the drugs they have a positive outlook based on the drugs.

Is the fear of JC Virus/ PML a legitimate concern with this treatment?

At this point I understand the risk of MDS or any cancers, I am just tired of getting sick from the low white blood counts.