Hi,
I was diagnosed with MG in April, 2012 after double vision and eye lid droop. I was 65 years old, male and in good health otherwise except for an autoimmune hypothyroid condition. I rapidly got worse and into general MG in a few weeks with trouble breathing, chewing, talking, typing, walking -- just about everything.
I took Mestinon (up to 6 pills per day as needed) along with prednisone at as high as 60mg per day. About 5 months after I was diagnosed, prednisone put me into MG symptom remission with medication.
I began tapering and at about 30 mg MG symptoms came back, and tried that a couple of times to go lower.
Prednisone at high doses can give us osteoporosis, so I was tested and found to have it and put on fosamax. Another cause of osteoporosis in older men is low testosterone. I was tested for that and found to have primary hypogonadism (my testicles were not producing testosterone).
In February of 2103 I was put on testosterone replacement gel to bring my levels up to low normal. By March it seemed to me that MG was going away as I had tapered down to 30 mg per day and OK. So I tapered gradually over the March and April and got off of it and mestinon by then end of April.
Now I have been in remission for about 5 years. I asked my endocrinologist and neurologist if low testosterone can cause MG, and both said they hadn't heard of that, but many things can mess up with a male gets very low testosterone levels.
Anyway I still take testosterone and am still in remission and wonder if the two are related. I had about 3 months of very bad MG, then with prednisone got better, and now am normal It took me about 6 months after I quit prednisone to feel normal again -- my adrenal glands had shut down on it and were slow to function again giving me aches and pains that were treatable with pain killers.
The usual statistics are that about 15% of MG patients go into remission of varying lengths of time from months to years to the rest of their lives. Now at age 71, and 5 years after MG went away, I am hoping that it won't come back again.
I always suggest to men that they have their testosterone levels checked just in case it wasn't a coincidence that my MG went away after testosterone levels were brought up to low normal. My doctors did say -- MG is most often seen in young women and older men, and so it is likely that hormone levels may be involved.
Good Luck
Russ

Russ, thanks for responding and glad to hear you continue to be in remission.

I had read so much on remission that I thought I would be but now reading more I realized there is no guarantee I will be. Still I am not giving it up and trying not to let it get to me.

Most days I am OK in spirit but occasionally it bothers me that I can't do as much as I would like and being a caregiver doesn't make it any easier.

My doctor advised against Prednisone because of the weight gain and the strain it would cause on my neck. My neck is one of my weak areas.

Now my legs and arms seems to be getting weaker and the muscles that controls swallowing too.

This morning I was whipping some eggs and not even a minute in my arms were weakening.

I see my neurologist in July so will discuss this with her. My last trip in January she wanted to increase the Imuran but I didn't want to so she increased the Mestinon. I may have to go this route, I just don't see how it would help since I don't seems to have the antibodies.

I would like to hear from more people on here just to get a general sense of this disease.

You might try the Facebook group https://www.facebook.com/groups/282211278475707/ There is a great deal of activity there and many folks who give feedback.
Russ

i was diagnosed 3 years ago, but in retrospect I believe it was brewing for years before. I have had a thymectomy, but has never been a day since where I have been symptom free.

Have you ever taken statins?

Hi I was diagnosed 18 years ago at the age of 30 and have 1 serious flare that almost cost me my life due to Not wanting to take the prednisone as the Neuro had advised against. That was in 2013 and fast forward to now I am still on 10-20mg of prednisone(depending on a flare) and the weight gain started to subside after I got to 15mg. I am nearly back down to my normal weight. (Cant get rid of the last 9lbs). I am also on 100mg of azathioprine. My MG is under control and I feel 90% better than when I was not on the prednisone. Unfortunately it has been hard for me to come down due to being on it for so long. almost 5 years. You will experience some weakness when given high doses but it should subside once your body has accepted the drug. I was in a hospital setting when I was put on 60mg at once. Hope this helps. Feel free to ask any questions.

Thanks all foe responding.

Throstle....I have never taken statins.

The new dose of Metinon doesn't seem to be working.

Will see what the Neurologist says when I see her.