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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Mestinon question

WTKlavier
WTKlavier
I was diagnosed in January and put on 40mg of prednisone. Then in early April I bega taking CellCept to amazingly good effect. The neurologist began a prednisone taper in June and I am now down to 20mg every other day. I have also been taking Mestinon, 60mg, 5 times a day. Recently I have noticed that it has almost no effect. My neuro has suggested that if I can get along without I should try.. Have any of you had this experience?

Thanks for any information that will be forthcoming. You are the BEST!
Barbel
Barbel
My mestinon dose fluctuates. It stays on your system about four hours. See how you feel four hours after you take it. The tricky thing with mestinon is that the side effects are the symptoms of thd disease.
Good luck.
annkemp
annkemp
After I was on cellcept for about a year I no longer needed mestinon.
Sometimes if I am in a stressful situation or have had a minor relapse I will take mestinon.
Usually don't need it when cellcept and prednisone keep me stable.
deleted_user
deleted_user
Hi there..I started when first diagnosed with mestinon and prednisone...After a few years had to get off mestinon due to it giving me BAD stomache problems..So neuro just kept me on the prednisone and seems to thankfully be doing its job so far, of course side affects there too, buttttt....But I do have mestinon on hand just in case I need...Mg the roller coaster ride!!! Everyone is different so hope whatever you take works good for you..Jacki
carolela
carolela
After tapering off of Prednisone , and being stable on Imuran, I also tapered off of the Mestinon. I still take one Time Span at night, not sure I really need it but feel safer taking it. My Neuro said I should be able to tell if I needed it. Good luck to you.
vieve
vieve
I'm guessing that when you say the Mestinon has little effect, you mean because you already feel good to begin with from the other drugs, not in that it just isn't helping and you feel symptomatic all the time. Mestinon works by facilitating the nerve to muscle transmission, and it just treats the symptom but not the disease, so if the other drugs are working well for you you probably won't need it anymore. After I had been on prednisone, IVIG and Imuran for several months, I stopped taking Mestinon too because it just wasn't doing anything. And I haven't taken it in almost two years! Mestinon can be taken as needed, so if you stop taking it but then feel bad one day, you can just take a pill and stop when you feel good again. It's always better to be on less pills, right? I hope it goes well for you.
sunev1961
sunev1961
I am on Imuran (8 months - 150 mg), tapering prednisone (9 mg) after a thymectomy in May 2012. I have not taken mestinon for 2 1/2 years. Everyone is different I guess! Good luck!!
cgreens
cgreens
Mestinon is a crutch. If you don't need it, stop taking it.

Cellcept is doing its job. If you feel you don't need the Mestinon, then don't take it. To be sure, I would reduce what you take over a weeks time and do some strength tests to really see if it helps or not. Test and test again...You may not realize. I did pushups to test my strength and that is how I know. I still take it whenever to give me more pep to my step, usually mid-day. Especially when I am to be most active, like playing basketball. While I don't need Mestinon anymore because of Cellcept, I know that I am not in complete remission because I know I am a little stronger when I take it. I look forward to the day when I can do the same with or without it and then I will reduce my Cellcept.