Is your neuro an MG expert? Sometimes this Mestinon dosing takes an expert who has LOTS of experience.

Upping the actual dose amount is not often what helps. A consistency of dosing throughout the day may be better. Like taking it every three hours. And at a lower dose, like the 60 mg. You can break those tablets - does your neuro know that? What about going up to 75 mg. A jump from 60 to 90 or even up to 120 can make you much weaker!!!

I actually feel better when I take a consistent dose all day/night. I'm on 90 mg. every 3 hours. But that's me. You may only need 60 mg. Or 75. Or you may need more when you go out and do things.

I'm not a doctor but this is how my neuro explained it all to me. He IS an MG Expert and MDA Director.

Many studies have shown that above 100 mg. the neuromuscular junction is too flooded with acetylcholine, leaving you open for having a cholinergic crisis more easily. Of course, everyone's ability to handle higher doses is different but it seems like your body can't. This stuff is nothing to "experiment" with. Going into a cholinergic crisis, where you can't breathe or move from too much Mestinon, is as bad as a Myasthenic Crisis (not enough acetylcholine).

The Pred issue is complicated. Usually doctors like to go every other day to attempt to keep your adrenal glands "turned on." They tend to go dormant when you have it every day. Why should they work when something else is doing it's job for them?!

Some people, however, have a really rough time with that schedule. And it may not be the MG on the off Pred day making you feel weaker. What if your adrenals have stopped working and now "need" that dose every day to keep you from having weakness from adrenal insufficiency? Again, not something to mess with. There are other symptoms of that, which you should become aware of. Like sweating, feeling "out of it," having your BP plummet, etc. An endocrinologist is really the doctor to evaluate that for you, NOT a neurologist!!!

The only way you can tell if your increased weakness is from Mestinon is to see how you feel off of it, like you did. Well, that's not completely true. They can figure it out in the ER when you go into a cholinergic crisis!

I hope you and your doctor can find a balance for what works for you. You do not want a trip to the ER. Not fun.

Annie