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...
Hello to all I had MG for one year just stopped Mestinon 3 days ago was taking 60MG three times a day and I really feel better and never did notice any difference from one dose to the next just wondering what is going on still on 500 mg Cellcept twice a day thanks for any reply’s and hope Rich reads this thanks
I was was able to stop taking Mestinon when prednisone started working well.
Mestinon helps us when our muscle receptors are blocked or destroyed (both things happen) by keeping the chemical that deliver messages (ACH) from nerve end to muscle receptor around longer. Normally our body creates it as needed, it makes the message transfer and then disappears. In regular MG, we still make the ACH, it still tries to deliver the message and our body gets rid of it immediately. However the message doesn't get into the receptors. So, keeping it around must a tiny bit longer makes it more likely the messages make it from nerve to muscle.
When our immune suppressing drug works, then the receptors grow back (and are not blocked either) and so mestinon is not only not needed, but it makes us feel twitchy -- sort of muscle message overload.
What our neurologists aim for is as little of the immune suppression as possible to make us functional, as immune suppression is not really a good thing for the rest of our immune system function (i.e. get rid of colds, flu....). So they start us at high doses of prednisone (my drug) or whatever, and mestinon, then expect the mestinon to not be needed, and then tell us to taper down until we get minor MG symptoms. I think there goal is to have us take just a little mestinon as that means we are at the lowest effective dose of immune suppressant, and they think the mestinon is better for us than higher doses of the cellcept or prednisone or whatever.
This balancing act is delicate. We do want as much immune system as possible, but we also want freedom from symptoms (and sometimes freedom from mestinon). For me, taking prednisone--which has many problems too long term-- the neurologist wanted me to keep dropping back until a little mestinon was needed to keep my functioning reasonable.
I think my ACHR+ MG was what might be called "classic" as I had the usual symptoms, responded as predicted to the medications, and everything progressed as predicted by most of the websites that describe diagnosis, treatment etc. The only difference, after a hard year of MG, I went into complete drug free remission and have remained there for 4 years now. My neuro says "be optimistic as it may not come back, but be vigilant as it surely could."
Good Luck
Russ