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...
I WAS DIAGNOSED IN MAY 2012. I HAVE BEEN OFF WORK SINCE. I RECENTLY TRIED TO RETURN BUT AFTER TWO DAYS I WAS TOTALLY EXHAUSTED AND COULD NOT HOLD MY HEAD UPRIGHT. I AM TAKING 90 MG MESTINON GENERIC 4 TIMES DAILY ALSO 250 MG CELLCEPT TWICE DAILY. ONLY BEEN ON CELLCEPT SINCE SEPT 1. I FEEL BETTER AFTER SHORT REST BUT FATIGUE RETURNS QUICKLY AFTER I RETURN TO MY FEET. ANYONE HAVE ANY SUGGESTIONS THANKS
Darci in Chicago
Once I got up to 60 mg of prednisone per day, most of the MG problems went away -- the prednisone works reasonably fast to shut down the bad antibody production--but of course it has some problems of its own. I am tapered back to 20 mg or prednisone and don't need mestinon, and doing OK as I try to get to 10 mg of prednisone on alternate days.
I wonder why you went directly on cellcept--as it does seem to be a slow and uncertain way to get your immune system to slow down the antibody production. Most of us get prednisone early for a quicker response, and the cellcept is in addition or as a longer term treatment especially if prednisone is a problem.
Prednisone and Mestinon is the pretty much the standard first treatment and for most folks does work OK to get the disease undercontrol, and is vastly cheaper than the alternatives.
It does take up to 1 1/2 yrs for cellcept to work.
Cathi
Ann