Hi, just wanted to add some details from my last post about my personal experience with the ATG treatment I received. Also I'm very glad to hear that it last beyond 3 years in some cases. That is more hopeful news. I had my treatment last summer and I have been off the cyclosporine since March. So my results are with no oral medication assisting in my results. My last hemoglobin count was 10.9 and platelets 100. The doctor did say that at any point if my counts start dropping dramatically I would need to go back on the cyclosporine. The ATG treatment was a last resort for me as there was no matching donors for a transplant, and we tried everything else available at the time. I also have PNH with a large clone size. I am treated biweekly with Soliris infusions to control the PNH and that is working as well without any notable side effects. In the next few months we are going to try every three week intervals for the Soliris treatment and see if my counts hold! I am sharing my experience because I know with MDS there are so many variables for each patient and their diagnosis, the more information that is shared the bigger the possibility of helping someone with their situation. Always stay hopeful! Every day is a blessing
