Quote:
Originally Posted by cait24
Right now I take 90 mg of mestinon 4 times a day and 180 at 10 pm before bed. If i have a bad day, I take 120, 4 times a day and 180 at night. I had the episodes when I stop breathing at night and wake up choking and gasping for air. I have not had it again since mt last IVIG, done for breathing issues. I am going for a sleep study, the pulmonologist thinks I need a c-pap to help me breathe at night.
Are you on an immunosuppresant? I take cellcept and have found a general improvement in my MG.
Try going to a neuromuscular specialist at a large teaching hospital. They generally treat more aggressively and with more than just mestinon.
hope you feel better
kathie
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Hi Kathie - No, I am not on an immunosuppresant. She wanted to put me back on a low dose of prednisone for 1 month 10mg every other day. I told her the Endocrinologist said no prednisone unless I am in the hospital hooked to an IV and it is for life saving purposes. (I think I am pretty close to that right now)
I know there are other options if I am to be placed on an immunosuppresant right? I guess I am a bit confused. I thought if you had your thymus removed that put you in the category as having your immune system suppressed? So why would you need to take more drugs to do that? I wish I felt better when I see her and we weren't always dealing with so many things. She spends an hour sometimes longer and I still do not have these basic questions answered.