Hi Mark,

I was taking 6 mestinon a day too and having a terrible time with my stomach. I cut down on meat and dairy and sugar which seemed to help you might want to think about pribiotics too. and also try looking into huperzine A it's a supplement sold as a nootropic but is a acetylcholine booster like mestinon. It's not as strong as mestinon but I've found it helpful and means I've cut down on my mestinon by supplementing it with this. There is a fair bit of info the internet if you search "myasthenia and huperzine A" and might be worth a try.

I'm currently taking 3-4 huperzine A tablets a day and most days no Mestinon but I've got it if I need it.

Hope this helps.

Ben.

Before prednisone began to work, I took up to 8 Mestinon per day. My strategy was to take 2 loperimide (Imodium) in the morning with my first dose and to always take a little food with each dose. That helped, and it seemed that I gradually got more adjusted to them and the digestive problems were tolerable after the first few weeks.

I had more problems with leg, calf and foot cramps at night and perfuse sweating when I was active -- and those were caused by mestinon as they went away when the prednisone got MG symptoms under control and I could stop taking mestinon. I did leg stretching bedtime exercises and quit mestinon at 6 pm to try to get rid of the night cramps and always carried extra shirts with me and deoderant and wet tissues to sort of do a quick cleanup of the soaking wet shirt and me.

I took Mestinon because it allowed me to function, just like taking prednisone. I tolerated the side effects as it seemed without the medications I would be pretty much a basket case. When I was first diagnosed and put on 3 per day of Mestinon, I ended up in the hospital because I couldn't breath if I walked across the room. The ER neuro tried me on 90 mg every few hours and that got me out again, but I found 90 mg per dose was too much, so I went to 60 mg every 3 hours if I needed to be active and less when not.
The pills got my MG under control and got a functional life back in the early days of my MG. It certainly beat the alternative for me. I was offered IVIG or PLEX too, but didn't like the idea of being tied to the hospital every month for the treatments.

Mark, I am currently taking 60 -75 mgs of Mestinon every 3 to 4 hours, up to 6 tablets per day. As long as I eat something when I take the Mestinon, I am ok. Without food, Mestinon makes me nauseous.
- Nan

I wanted to throw it out here that I tried the Hup-A and it was not as effective as Mestinon. Not even close. Perhaps I wasn't getting my dosages right, but at any rate, Hup-A is a known help for folks with Alzheimers disease. It crosses the blood-brain barrier, which Mestinon does not. MG is in the peripheral Nervous system, not the central nervous system. Based on that alone, I would say by taking Hup A over Mestinon, you may be risking unneccessary damage to receptors.

I took 180 mg of the extended release Mestinon BID and 60 mg. or the regular pyridostigmine every 4 hours while awake for years. When I first started of course I noted diarrhea. I titrated the Imodium and found 4 in the morning would keep the diarrhea away. I do have to add more if I go on an antibiotic and sometimes also need more pyridostigmine depending on the antibiotic but this is something I discussed with my neurologist.

Pyridostigmine makes such a positive difference in my life and it is easy for me to titrate imodium to effectively prevent the GI effect. I hope you have a similar result!

I am currently taking 6 60mg mestinon tablets a day. I normally take with yougurt or applesauce to reduce stomach problems.