Hi, frank here I was Dx with MG in 2002, I was 42 years old. Their are two plus and a minus from taking mestinon. The minus is diarrhea, the plus is it helps with the symptoms of MG and it lowers BP. A 60mg pill lasts about 4 hours. Mestinon works best if you take it regularly as prescribed. If you take it intermittently, for some reason it is not as effective. But sometimes you have to do what you have to do. My MG is under control and I take it as needed. I usually take 30mg as needed during the day. If I need it during the day it is usually around 4 or 5 pm. Please follow your doctors prescription.
Frank

Hi, Sorry to hear you have MG. However it is treatable and most of us do well with treatment.

Mestinon (pyridostigmine) is usually the first medicine we take for MG. My doctor told me to take it as needed (like aspirin) up to about ten 60mg pills per 24 hours when I was at my worst. I took about 6o mg every 3 hours when I wanted to be active, and much less the rest of the time.

My worst side effects: diarrhea and stomach upset, leg and foot cramps and profuse sweating.
I always took it with a little food and each morning took two Imodium (loperimide) and that helped with most of the digestive problems. The foot and leg cramps were bad, so I took very little in the late afternoon and none at night most of the time as well as did some leg stretching each evening before bed. For the sweating, I always carried extra shirts along if I was going to be active. In the summer I might get totally soaked after half hour of minor effort.

Mestinon works with the symptoms and does not stop our immune system from manufacturing the bad antibodies that attack the neuro-muscular junction. Some people can get by on just mestinon (not so many), but most of us have to take an immune system inhibitor. I took prednisone. When the prednisone worked, I no longer needed Mestinon.

However the goal of MG treatment is to dampen the immune system enough so with some mestinon we can get by reasonably normally. Too much immune system suppressing and we get all sorts of other problems.

I think after I got used to mestinon the side effects were less than when I started. When I first got MG, I ended up in the hospital ER and ICU because I had trouble breathing. There they just upped the dose of mestinon -- 120mg at a time. I couldn't handle that so took 60 more often. My original prescription was three -60 mg per day, which was a joke, as it was about 1/3 of what I needed to function! My second neuro just told me take as much as you need up to 600mg per day, but spaced out at no more than 120 mg per 4 hour period.
It took about 4 months for the prednisone to take over and get MG under control.

Good Luck Russ

Starting mestinon is mostly just the side effect problems. I think most of us start immediately with three pills per day and no working up to that dose. Usually it makes MG so much better we tolerate the side effects.
There are some things that may help:
take it with food and use loperimide if needed to help with the GI symptoms
take it about 1/2 hour before you eat or want to do something as it takes about that long to work. My strategy was in the morning-- take two loperimide (imodium), the mestinon 60 and a piece of toast. Then 1/2 hour later have breakfast. The mestinon before meals made it so I could chew better -- otherwise after a minute of chewing my jaws were exhausted.
After breakfast I took another pill (about 2 hours after the first) and that got me going for the day. I then took 1 pill about every 3 hours until late afternoon when I quit with my physical activities and with the mestinon. I used a CPAP to ease my overnight breathing so didn't need the mestinon for that.
Mestinon at high doses got me through to when prednisone took over.
Russ

There are test to help determine if you have MG. Have you had any test? Examples: Tensilon Test, Acetycholine Receptor Antibody Blood Test, Anti-Musk Antibody Test, EMG Study.

Mestinon: My neurologist started me on 60mg every 8 hours. Did that for a month and there was no improvement in my double vision. Then he told me to take 2 tablets every 8 hours and after a week the double vision went away. Still taking 120 mg every 8 hours.

Can't say for sure, but I think most of us at one time or another, play around with our dosages to try to cope. I will probably scale down my pills by 1/4 of a pill soon. I did the math. If I take 6 pills per day X 365 days = 2,190 Mestinon Pills in one year. Who could fault me for wanting to at least try to reduce that annual number of pills.

Everybody is different. Best of luck to you.

Thank you all so much for sharing such wonderful advice. The information about Mestinon versus an immune suppressant drug was really helpful, along with the advice about immodium. I really appreciate it. My Acetycholine Receptor Antibody was high when I took the test over a year ago. Then, I had it rerun because my doctor was skeptical, and it came back negative. I recently moved from Portland to Austin, and I saw a new neuromuscular specialist yesterday. He said based on my symptoms, I should start Mestinon and see if it helps. I am also rerunning the MG blood panel, and it now includes a newer blood test that Mayo Clinic just came out with two months ago. Like many others, I saw MANY doctors who knew nothing about MG. It has been a long road. I hope that my new blood labs come back positive again just to confirm the diagnosis to make things easier. Thank you again!

My EMG study was negative, so I might have that repeated as well, since it's a year old also. Hopefully the blood test just come back positive so I don't have to do it again. Ha.