Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Mestinon

Summerlover
Summerlover

I have not posted in quite a while. I finally found a neuro that would listen to me. Negative on labs, emg, and RNS. She is doing a mestinon trial. Wow, my ptosis reverses itself, tremor goes away, feel a little stronger and don't feel so out of breath. I take 60 mg every 8 hrs, but it starts wearing off at about 4 hrs and is totally warn off at about 5 hrs or so. Is this normal? I take it before bed but it is long gone before morning. Does Mestinon build up in your body after you take it a while. So happy it is helping, just wish it would last.

lynn52266
lynn52266
Hi summer,
That’s great the mestinon is working!
When I was on it I took it every 4 hours,
I would feel it wear off like you described.
From my experience 8 hours is too long to wait between doses. It’s very short acting and I don’t believe it builds up in your system .
Kennneth
Kennneth
Hi when they put me on it i was talking 60mg every 4 hours it did not work for me at all just made my eyes hurt and water alot and my nose run
Rhanson
Rhanson
At first I had 3 per day, then rapidly had to take 6-8 per day to function. That meant my MG was progressing from ocular to general and so I had to start prednisone. After a few months of prednisone I didn't need mestinon anymore.
Good Luck
Russ
PeterL
PeterL
I think you have it right. Mestinon snaps it fairly quickly, lasts around 4 hours and has no lasting effect. It might make sense, to take 30mg every four hours or vary your dosage in some other way. I usually start the day with 30mg, after that it's a matter of how I feel. Usually, none but if I have to speak a lot then perhaps 60mg. Either way, you need to talk this through with your neurologist.