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Yeah I'm not sure why she gave me a mirror on instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. Yeah I'm not sure why she gave me Imran instead of CellCept. I've been on it for a few days now and nothing happening but she said it wouldn't change anything for a while still on the 20 mg of prednisone which helps but I'm not as good as I was last year, I think mine has gone generalized. I can swallow, but I think the lungs are affected. I had a good year one just a low-dose of prednisone, 2.5 and the Mestinon just once a day got me back to normal. But this spring my eye didn't droop, but i had double vision and some lung issues so had to up Prednisone to 20mg and mestinon 3-4 times a day. That helps, but I am still not normal if you know what I mean.
With the CellCept was it effective soon after you began taking it?
Although I showed no evidence on the CT of a thymoma they suggested the thymectomy so I had that January 2023 in hopes, it would keep it from generalizing.
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Cellcept was not effective in preventing eye droop or the “brain-nerve-muscle” communication caused by MG. It is being used to slow the Pemphigoid disease progression of my corneas. To have both is even more rare.
I had heard that Cellcept is a long term use (probably rest of my life) option because prednisone isn’t. although not the same drug may help fight the same battles. Since drugs that seemed to help you didn’t help me, I was curious if cellcept might help you too.
So far I am lucky, no double vision, no swallowing problems and other muscles do get the signals from brain. Sounds like yours may be moving to other parts of your body and that puts your condition at a whole new level. Keep fighting learning and listening. It’s all any of us can do. It’s hard to stay positive all the time especially when my issue is constant. So I try and remind myself to be thankful for the so many other positives things I do have.
My eye droop began Dec of 2020 and has stayed ocular only. I am going to engage another set of doctors at Mayo to continue my fight and kearn more. Have you been, or are you being, treated at the Mayo Clinic?