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Real members of MGteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I want to come off medication for MG. As I just don’t feel good taking a barrage of medication

A MGteam Member asked a question 💭
Sydney, AU
September 9
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Answer Summary

Members responding to the question about coming off MG medication shared personal experiences with side effects like severe bowel issues and... Read more

Members responding to the question about coming off MG medication shared personal experiences with side effects like severe bowel issues and sleep disruption, with many working closely with their neurologists to adjust or taper their medications safely. Several members offered helpful tips for managing Mestinon side effects, including eating before doses, taking probiotics, and adding fiber supplements, while one member shared encouraging results after switching to monthly Gamunex-C home infusions. A recurring theme was the emotional weight of living with MG, balancing gratitude for small improvements with the grief of losing independence, and leaning on community support to keep going.

A MGteam Member

Ya I'm not washing it out to much to it, but I lost 40lbs. in 6 months so every time I had to go but new underwear I got a smaller size ❤

September 10
A MGteam Member

I have been on 10 mg of Prednisone for a year. Initially, I did not have any side effects. Within the last month or so, I have only been sleeping 2-3 hours each night or not at all. I can not function on that little sleep. I spoke with both my primary care doctor and my neurologist. They were in agreement I could be weaned off. It will take 8 weeks. I am on the 6th day of the first two weeks and already I am only waking up one time at night. Praise the Lord.

September 9
A MGteam Member

So happy for you , we go though so much and appreciate just the little things so much more , I guess that's something positive about MG , before MG I took so much for granted now I don't❤🙏

September 13
A MGteam Member

I’ve already started to see improvements. So grateful!

September 13
A MGteam Member

I hope you keep get better each day❤

September 12

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