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...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

What signs/symptoms moved those of you to get on c

mellywil
mellywil
Hey, I have had some concerns more lately but wanted to ask what symptom changes even if just i degrees changed along w/ any signs that is a look out for might be x for more help of cellcept. I can not take prednisone, very allergic but have to take 6 Mestinon a day just to use my walker to get to the restroom. I have had 12 on some flares a day to per doc... X for more med help
GreenMarie
GreenMarie
I am wondering if you use a combination of long acting mestinon with the shorter acting. That works really well for me. I take the time release twice a day at 7 am and 7 pm and add in the short acting as needed. On a very good day I only need the short acting at 7 am 2 pm and 7pm. I need more with extra activity and when taking drugs that compete for acetylcholine. When hospitalized on pain killers and antibiotics which compete I took the time release at 7 am and 7 pm and 90 mg of the short acting Q4H with the pain killers and antibiotics. That is the most I have had to take. I have problems with prednisone as well. So far I have not tried other things. Hope you find a combintion of medications that gives you a good result. Marie
mellywil
mellywil
Thx another ? to bring ip at docs! Thank you
deleted_user
deleted_user
If one is allergic to prednisone, does that mean one is allergic to all the glucosteroids? Just a question. There are others, but I don't know the answer to my question.

Also, it seems if so much Mestinon is required that it might be time to bring up IVIG given your circumstances.

Be well.
DEEW4
DEEW4
I just got home from my biweekly ivig. It is miracle drug for me. I know it is expensive. So far, medicare and Tricare have covered 100%. I have learned so much from you guys. I have had reactions to everything else. But, if I try mestinon again I will ask doctor about taking Prilosec in the morning and take it with food.
I am happy for all the positive remarks and Atta boys' Great cheerleaders, prayer warriors and all around good people.