So far I have taken mestinon for two days and it creates some moderate stomach pain. Has anyone gotten used to the medication so that down the road, they didn't have any pain? Mestinon really seems to help my symptoms, I just hope it gets easier to use as time goes on.

Hi Tony292 yes it does get easier and for me it was just a few days before the stomach discomfort and pain wore off.

Hi Tony,
Are you taking mestinon with food, or all least some food. I think you will find almost all of the folks I hear from on this site, recommend taking it with food. I guess I'm luckier than that, I can take on an empty stomach, however I try to have a snack or something. Keep us posted
FREDH

Hi, if you just started, how much are you taking now?

I started with 2 x 10 mg a day and had side effects only the first week or less, like stomach pains and muscle's being weird.
Whenever I had to take more, I did this very slowly to get my body used to it.
Now I'm on 7 x 90 mg without any side effects
Fredh's advice is a good one, especially of you have stomach troubles.

I'm taking one 60 mg tab per day for three days, then two per day for three days, then 3 per day after that. Trying it out for a few weeks to see if it improves my DV, Ptosis, leg and trunk weakness, etc. I am negative for all the antibodies and nine (yes, 9) different neurologists over the last three years have tested me for everything from ALS to ms, etc and they all stated I could not have MG because the antibody tests were normal. Now I saw a Neuro opthalmologist who said that is nonsense, you can have all normal testing and still have MG so she put my on mestinon to see. Today is day two, and I think it helps a lot, although see,s to wear off in about 3 hours.

My husband started with half a 60 mg. mestinon three times a day, after each meal. It stopped the double vision and ptosis, and he's still on the same routine. I think the doctor told him to take it after eating so it wouldn't upset his stomach.

Hi, Tony. I never had any stomach/GI issues, other than it helped peristalsis.

Mestinon kicks in about 30 minutes after you take it. Two hours after it kicks in, it wears off. So you're only getting about two good hours of use!

At some point, your doctor and you should have a conversation about the dose amount and the spacing of the dose.

More isn't necessarily better with Mestinon. You can overdose with too much and have a cholinergic crisis (from too much acetylcholine).

Too little acetylcholine can cause a myasthenic crisis.

It's a tricky little drug (and disease).

Have your doctors considered LEMS (Lambert-Eaton Myasthenic Syndrome) or a CMS (Congenital Myasthenic Syndrome)?

If you have low IgA, the antibody tests can present with a false negative. Has anyone tested your IgA levels?

What else can we help you out with?

There's a lot to know about MG. If that's what is going on, you should read up! I hope the doctors can figure out if it's MG for sure, because it sucks not knowing.

Annie