My husband was diagnosed sept 2008... we are very thankful that his symptoms are limited to his eyes....he was doing pretty good until dr tried to wean him off his prednisone...ended up back at square one. He is now on 15mg prednisone 3000 mg cellcept and 60 mg mestinon 4xs a day. the big change was when they took him off the prednisone...i would love to see what would happen if they tried upping his prednisone. cellcept has not seemed to help at all . he was on azathioprine and had good results but had a reaction to it so had to stop...
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Thank you for answering. I was dxd by Athena Diagnostics as having Musk + MG in Sept. 2010. I didn't realize there was more than one kind of Musk +. The more I learn about this disease, the more amazed I am at its complexity. I have a wonderful Neuro and I am so blessed at how well I am doing. From the beginning I only had the bulbar symptoms. My arms and legs have been and are fine--thank the Lord. Right now it's my eyes that are giving me the most problem. I was recently dxd with dry eyes--just what I need! I have had bouts with double vision but thankfully they haven't lasted for a long time. I have been on 30 mg of prednisone for quite some time. When I went outdoors and there had been a temp drop to 7 deg. below 0--I got double vision. I was fine before I went outdoors--thought to myself how fortunate I was that I felt pretty much like my old self. (I live in Maine and I would love to find somebody with Musk + MG in Maine to talk to. I think I'm the only one!) My Neuro doubled my pred. fom 30 to 60 mg a day for 4 days--and my double vision went away on the 4th day. My eyes are light sensitive, get bloodshot if I'm on the computer too much and I have blood vessels that burst in them. Have had a history of burst blood vessels for years. My Neuro would have tried reducing my Pred. my last appt in March but I have a colonoscopy coming up in May and the last time we tried reducing my pred. I got double vision so I don't want any changes until after my colonoscopy. Then I'm sure he will try to reduce it. I'm currently taking 2000 mg of Cellcept a day and 60 mg of a generic for Mestinon 3 x a day. I am working full time. I get tired out but am grateful I can work. I need to for the medical insurance. One of the hardest things to all this is the difficulty of trying to plan what to do. Should I replace my car--things like that. If I have to stop working, I wouldn't replace it but if I knew I could continue working--now would be the time. No answers to it.
I've found such support on another site that has been such a blessing to me. There's a bond with people who you know understand without words about it all. I can see this site is the same. I need it that's for sure.
Thanks again for reaching out to me. Can't wait to see what happens if I actually get this sent right... Ho
Grace
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