I saw my neuro yesterday and he feels that it is time to start a long term immunosuppresant. My prednisone has been lowered to 35 mg every other day and my symptoms have started returning. He said he isn't comfortable leaving me on the pred forever but lowering the dose will just make the MG continue to get worse. We talked about Imuran vs Cellcept and he feels cellcept is the best choice for me. I am terrified of either because of the risk of long term problems. I just wanted to see how many of you are on cellcept and have you had permanent damage from it that you know of? I am trying to take this one day at a time but find myself stressing out worrying about the "what ifs" I think alot of that is coming from the lung disease that they now feel was related to the medication I was taking for a blood disorder. It was a real wake up call as far as any medicine having risks. I always read the side effects but thought they were rare and wouldn't happen to me. I now know that is not the case. My Neuro was extremely interested when I told him about the Agrylin most likely causing the lung disease. He wrote the medication name down and asked me to spell it so he knew he had it right. I have to wonder if he is thinking there might be a connection between it and the MG as well. He didn't say that but his interest seemed to make me think there was something on his mind that he wasn't sharing with me.
One other question...for those of you on Cellcept how long did it take before you started seeing improvement? I know it can take several months but am just curious what the overall timeline is.
Kendra