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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DebSherwin 12/10/2013

I am new to this disease and am now on Mestinon. The docs have started me on a low dose which is being increased slowly. I am trying to learn as much about MG as I can, but I haven't been able to find anything that says if you have MG, just go on Mestinon and you will be controlled, and get your life back. Is that unrealistic?

SeattleWriter 12/10/2013

Mestinon will treat your symptoms, but not the cause of MG. If a person has somewhat mild symptoms or the disease isn't progressing, I think that person could probably do nicely with just mestinon. I, for one, did really well on mestinon alone for a few years, but finally needed steroids to get at the cause of the MG when I started to have a lot of progression. Mestinon is still, in my mind, a miracle drug, though, and my first line of defense against symptoms. It takes some tinkering to get the dosage right and to learn how much your body needs each day, but you'll get there.

annkemp 12/10/2013

It may be all you ever need. I hoped for that. My docs recommended a low dose of immune suppressants such as prednisone and I said no.
I didn't want to go on prednisone.
I had a severe crisis. In hospital for weeks. To get mu system under control I had to go on 60 of prednisone.
Maybe is you rest more than most of us could ever do ...you could be a lucky one and beat this. If you head down hill I would recommend getting on prednisone before you crash too far.
Mestinon is to MG as taking asprin for a headache. It may work but fixing the reason for the headach may be what you need to do.

ray2me 12/10/2013

Hi Deb , mestinone has been around for over 50 years and is used primarily on Mg . If you get worse you may have to also take cellcept or another drug as well as mestinone but if you can keep from pushing yourself to hard and getting to tired mestinone could keep you for many years. Rest is our friend , Charlie

deleted_user 12/10/2013

There is some research supporting the theory that a low dose of steroids slows the progression of MG. Gambling on Mestinon is not something I personally would do.

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