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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EssentialOilMom 09/06/2015

Hello Dear Friends,

I am afraid that I am developing a intolerance to Mestinon. I have been on it for over a year - was officially dx this past October. I am taking 90mg every 4 hours in addition to 1 mg of Rubinol with the Mestinon.

In the last week in a half I have started having a very distinct uncomfortable feeling deep in my stomach along with terrible nausea within a short time of taking Mestinon. I always take it with food - I know the importance of doing that. At times, there is a burning feeling as well.

I spoke to my MG neuro late Friday - he was not so sure it was the Mestinon but he said that since I have IVIg this Tuesday, to stop taking it and see if symptoms improve. He said he hoped it was not the Mestinon bc that would not be good. Since stopping, I have not hade any of the symptoms.

What are the other options if it is the Mestinon? Has this been an issue to others?
Thanks for your input!

Rhanson 09/06/2015

I tried to take 90mg at a time too, but couldn't handle that much at once. I was able to do 60 mg every 3 hours and sometimes split one of the 60s into 30 and tried that ever 2 hours or something like that.
I also had to take loperimide (imodium) with my first dose of the day.

good luck

limpnoodle 09/06/2015

Yes, smaller doses are easier to tolerate. I can only take 30mg at a time. I take it every two hours with no symptoms.

EssentialOilMom 09/07/2015

Thanks for your input!

I had been taking 90 since early June with no difficulty then all of a sudden I am having trouble - I have been off it since Friday ~ Today is now Monday and other than terrible fatigue- having a very hard time waking and getting around, I am having no stomach symptoms at all.
Not sure what my MG neuro will do. :/

desertwindartist 09/07/2015

For sure reg mestinon makes me sick as a dog.My neuro said I had to take mestinon no matter what and switched me to the 180mg time released both day and night. In daytime I take one every 4 hours and one at bedtime to last thru the night.. No tummy trouble for me this way and of course I always eat solid food with each dose but it doesnt take as much food as the reg either. Im very happy with the time released mestinon. (reg mestinon gave me a bunch of other nasty side effects as well)
Good Luck!

MGOhio 09/10/2015

I've been pretty lucky, and so far have tolerated Mestinon decently.

Like you Essential, I must admit though I DO get that same uncomfortable feeling you describe, deep in my stomach at times, but have been unable to relate it to the mestinon.

Perhaps that's what it is.

I have chewed the tablets up in the past, when I was in a pinch and didn't have any water. Maybe that would help ?

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