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A MGteam Member asked a question 💭
Reading, MI
June 4, 2025
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Answer Summary

Members discussed adjusting Mestinon doses and shared how lower or more frequent dosing helped reduce side effects like leg cramps, sweating,... Read more

Members discussed adjusting Mestinon doses and shared how lower or more frequent dosing helped reduce side effects like leg cramps, sweating, and bowel issues while still managing symptoms. Several members described working closely with their neurologists to find the right balance, with some gradually tapering down and others combining Mestinon with treatments like Vyvgart. A recurring theme was hope, with one member sharing their doctor believes they may be in remission after symptoms like double vision and muscle weakness significantly improved.

A MGteam Member

I never forget when its time to take my meds I can tell because it does help open up my eye, my prisoms work great for the double vision.

June 6, 2025
A MGteam Member

I've been going in the opposite direction. I started on 60 mg. three times a day, and couldn't tell if it was working or not. Some days the symptoms are noticeable enough that I start right off first thing with the drug when I get up, and often I can't tell if it is making any difference. Last week I asked my neurologist if I could try either a bigger dose, or a more frequent dosing schedule. He now has me taking it up to five times a day. I don't yet know how well this will work, because on a good day I forget about taking it until I notice symptoms...and when I do take it, I can't tell if or when it starts to work for me. In fact, when it was three times a day I would wait on purpose until I HAD to take it to see straight, so I wouldn't run out of doses during the course of the day. On five doses a day I shouldn't have to do that anymore...but I still am left forgetting to take it at times. I am not complaining, far from it! I think it is a blessing to have such mild symptoms. I wish everybody got off as lightly as I am at the moment.

My neurologist also said that on the bad days the Mestinon may be helping, even though I don't see it, because the symptoms could be worse without it. SO far no side effects...which is another blessing.

June 6, 2025
A MGteam Member

I dropped from 6 to 5. It helped with the unwanted bowel side effects a bit. I talked with my neurologist first, of course.

June 4, 2025
A MGteam Member

I take the 60mg mid day. I still take the 180 mg 2x a day.

June 14, 2025
A MGteam Member

Now with this cold my right eye that has the wrinkle on the retina membrane feels tight and I have a hard time focusing , I hoping its just a flare from the cold I have really been coughing hard and a lot ,getting better❤💙💙

June 12, 2025

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