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Haven’t been prescribed Imuran. But have tried Prednisone and and (pyridostigmine) mestinon but those didn’t work well for me.
Did have surgery to lift lid and this improved vision but lid still droops.
Also have Cicatricial Pemphigoid. Taking A generic for Cellcept (Mycophenolate) which is something I can stay on long term, while prednisone is not a long term option for this condition. This drug has not help my OMG right eye only. If you had success with prednisone may Cellcept could help too??
I had a CT scan to check for a thymoma, but that was negative. I did hear if you do have a thymoma there has been success against the generalized MG.
News for us both, the longer it stays ocular (2+yrs) there is an 85% chance it will not progress to the rest of our body.
I got appointments for tests and doctors at Mayo on July 29th for second opinion on all.
Will post results after that.
Good Luck
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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.