• Community Member

    Member

    It is so hard to find the right medication for sure. We are all struggling with that I’m sure. I was off all medication (prednisone-mestinon) after my thymus/thymoma was removed in 2013 but in a year, after a bad viral cold, my eye droop, double vision and general weakness came back. Instead of restarting prednisone, I was placed on Cellcept 3000 mg but that took six months to work and I find that Mestinon really does not work that well for me, even at a low dose of 30mg, three times a day. I get cramping and other GI issues and sometimes I think it makes my eye ptosis worse! My Cellcept was reduced to 1000 mg since I responded so well BUT, low and behold over but this past HOT and HUMID summer, my ptosis has come back and has yet to be resolved. I have been off prednisone for 10 years and my primary suggested a 10 day dose pack to try along with going back to my full dose of Cellcept. So far, minimal help but I refuse to try steroids again if I can really have a say in it and hope that my Cellcept will kick back in! Best of luck.