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 have been on Pyridostigmine (Mestinon) since I was diagnosed with MG in 2014. I had double vision and weak jaw muscles as the only symptoms. I was told that the Mestinon should temporarily relieve the symptoms, but I never did see an improvement in the double vision. The only thing I experienced with increased dosages was more severe leg cramps and twitching muscles. This did get better after several months and I discontinued the Mestinon.
When it returned in 2015 (much worse double vision), IVIG was tried with minimal results. Then the Mestinon, with results similar to before, but symptoms got worse. Only after prednisone and cellcept were added did the vision improve.
Then, in tapering off the prednisone, the double vision returned (at 6mg every other day), so the dosage was increased to 15mg every other day, and cellcept increased from 500mg twice a day to 750mg twice a day. I am still taking Mestinon (30mg 5 times a day), the same as usual.
Since the vision has been reasonably good for some time now, I am considering trying to again reduce the prednisone (next Dr. appt. in Feb). The question is, since the Mestinon does not appear to really do anything for me, and it only treats the symptoms, could it interfere with the attempt at the prednisone reduction by masking the balance between the prednisone and cellcept? It seems that it could make it harder to determine when the point is reached where the cellcept takes over from the prednisone. Would it be best to just discontinue the Mestinon for now?
Has anyone had a similar situation with this?
Thanks for any help.
John
When it returned in 2015 (much worse double vision), IVIG was tried with minimal results. Then the Mestinon, with results similar to before, but symptoms got worse. Only after prednisone and cellcept were added did the vision improve.
Then, in tapering off the prednisone, the double vision returned (at 6mg every other day), so the dosage was increased to 15mg every other day, and cellcept increased from 500mg twice a day to 750mg twice a day. I am still taking Mestinon (30mg 5 times a day), the same as usual.
Since the vision has been reasonably good for some time now, I am considering trying to again reduce the prednisone (next Dr. appt. in Feb). The question is, since the Mestinon does not appear to really do anything for me, and it only treats the symptoms, could it interfere with the attempt at the prednisone reduction by masking the balance between the prednisone and cellcept? It seems that it could make it harder to determine when the point is reached where the cellcept takes over from the prednisone. Would it be best to just discontinue the Mestinon for now?
Has anyone had a similar situation with this?
Thanks for any help.
John
I think the general idea doctors have is that with some mestinon you can get by with less prednisone (or other immune system inhibitor). Prednisone (or other inhibitors) at the lowest level possible is always the goal, as their side effects are worse long term than mestinon's short term ones. If mestinon lets you drop lower than without it, you take it for that reason. Otherwise, like me, you might move on.
It can be a real annoyance (summer sweats so I had to bring 2 shirts along to change, late night agonizing cramps, and for sure no problems with constipation). However, at first, it was a life saver to keep me functional while trying to get prednisone to work.
Good Luck
Russ
My Neurologist started me with the typical 60 mg dose. Soon, I will have a CT done to determine the status of my Thymus. If a tumor is found it will come out. After that I would assume I'll go on Prednisone.
Like Ted, I believe the Mestonin is a necessary, but temporary, first step in treatment.
Best wishes to all.
I too should be reducing prednisone.
I take mestinon only when under stress when symptoms pop up.
Since we need to take it so often I just take prednisone and cellcept.
Your choice.
Just remember do prednisone drop slowly. They say drop 50 percent ove a 6 month period.