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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Muscle twitching

ericavt
ericavt
Do any of you have trouble with muscle twitching? I have been having various parts of my body (especially my face) twitching rhythmically off and on. It's usually in the morning after my first mestinon dose.
deleted_user
deleted_user
I think everyone who takes Mestinon gets twitches. To get around this problem somewhat, I took small doses more often (sometimes cut the pills in half). The twitches might be a sign that you are taking more than you need--although I got foot and calf cramps as well as twitches here and there as long as I used Mestinon--even at lower doses.

When prednisone kicked in and I didn't need Mestinon, when I took it, all I got was the twitches and cramps and didn't feel any better with the muscles.

Good Luck
mermaid3
mermaid3
I too have had twitching in face, upper arms, back, thighs and cramps in in calves and feet. I agree with Russ on the mestinon advice. also i found extra potasium to help..eat a bananna or some other potassium rich food.
deleted_user
deleted_user
I had twitching before the use of Mestinon, but I have also had it from Mestinon. Trying to keep the level in my bloodstream more consistent seems to help, but that is tricky.
CarlyMichelle
CarlyMichelle
I've had twitches for years. Mestinon (when it's a it's peak) makes my twitches go nuts. It only acts up worse for about 30 mins. or so and then back to "normal" intensity of twitching.

Carly
ericavt
ericavt
Thank you so much! I am partially still in the denial phase of this illness, and I was slightly worried that if I was twitching because of mestinon.... nevermind. Mind running away with me in a negative direction. I take regular mestinon 90 mg at 0630, noon, and 5pm. Then I take an extended release mestinon 180 mg at 10 pm. The only other MG medicine I have had was IVIG. They are avoiding steroids because my depression is so bad. Thank you so much everyone!!!!
deleted_user
deleted_user
It's really difficult to adhere to a Mestinon schedule, in my opinion. It takes some time, but if you observe how things are going, you can get to a point where you know how much you need. Also, in my opinion, you cannot protect yourself from the worsening of MG without some other treatment. Mestinon treats symptoms but does not reduce the antibodies that cause the troubles. Has your doctor talked to you about Imuran or Cellcept. Those immunosuppressants don't have as a side effect "the crazies" as I call them but will lower the number of antibodies produced.