Good morning all. My left eye lid was closed for a year and a half before I was diagnosed with OMG. I was started on azathioprine and 5 mg prednisone and within 48 hours my eye lid popped open and has been for two years. Doctors said the prednisone was the cause of the improvement. The prednisone was gradually increased to 30 mg per day. After about 4 months my liver cried "foul" and all meds were stopped. But during the pred months I felt 30 years younger. The secret. I think, was small gradual increased doses of prednisone and constant monitoring. Of course, as I have gotten older and older, there is more and more I know less about. A little of something good can be better than a lot of it.
Cheers. Bill Z (age 79 now)

Mary, I hate that you’re experiencing this. Prednisone always prevents me from getting a good nights sleep. It’s so frustrating. I’ve been on the prednisone roller coaster for a few months. Currently I’m on 15 mg daily and it isn’t helping my symptoms. I take 60 mg of Mestinon 4 times a day. I’m still having severe double vision. I’ve contacted my doctor but haven’t gotten a reply. I can only hope I’m on the right track.
Unfortunately, I think this is a wait and see thing that is going to take time. I’ve heard that it can take years to come up with a good plan for treatment.
I sure hope you get some relief from your symptoms soon. It is definitely frustrating.

Hi there Rosie! Prednisone may help a lot of people, but it just made me plain s-i-c-k! My Neurologist had me on it for a year and took me off and said for me never be on it again. Grateful others can tolerate it, wish I could. Magnesium is another one that puts me in bed & we still are not friends by any means. I have a few more like this that others swear by that I cannot even talk about without tearing up. My best to you!! Cindy in Chandler, AZ.

I have a love / hate relationship with prednisone. I agree that it is able to make improvements, but the side effects outweigh the benefits for me most of the time.

I’m only willing to take it when my symptoms are really really weighing me down and I can’t argue otherwise.

Mary Gordon, I would just message your doctor from time to time, and keep them in the loop when you do have side effects so they are aware.

Hang in there!