I also started developing antibodies after a few transfussions so my doctor recommends I get the least amount of them because she said later on "it might be difficult to find blood for you." And since the medications are not helping that would be a big problem and would get me much closer to a transplant date.
I tried Revlimid and I had one of the worst side effects. I developed Hemolitic Anemia. That is when the body turns onto itself and it starts chomping down the good red cells. So, since last February I have been fighting both anemias. The Hemolitic caused by the Revlimid and the RA caused by the MDS. Feww!!
I know we need to concentrate on "quality of life" but some decisions are very difficult to make, and, at least in my case, my doctors leave many decisions up to me as in how low can I let the Hemo go down and still feel OK.
So, sometimes I get to the 8s and I feel I am dragging too much so I ask for a transfussion and other times, I don't know why, I feel OK at the high 7s.
Who knows how things work with this rare disease! I am doing my best at not driving myself nuts and living as normal life as possible.
Kitty
