Hi all,

I'm new here, nice to 'meet' you

I'm a 25 year old from London who has just been officially diagnosed with MG after a hellish 18 month period of horrible symptoms. My blood test was positive for antibodies once, and negative the second time (go figure!). SFEMG was clear.

I'm being started on Mestinon and I'm really nervous having read that if you take too much, or don't actually have MG, Mestinon can put you into cholinergic crisis... I can't shake the idea that maybe the neuro isn't right with this diagnosis, so I'm a bit frightened of the medication. I'm meant to start on 30mg once a day, as of tomorrow. Presumably this is a relatively small dose...

Do you know what effect, if any, the Mestinon would have if I didn't have MG?

I realise this probably sounds crazy, but this whole situation has turned me into a bit of a worrier!

Thank you x

Hi and welcome to the forums,

An overdose of Mestinon feels like your symptoms are getting worse rather than better. It is a quick acting medication, you'll know within 15-30 minutes if it is working or not.

Cheers,

Brian

Thanks for your reply Brian. So I'm unlikely to get into any trouble on a one off dose of 30mg?

If you get too much you will get diarrhea. 30 mg is almost nothing. I take 60 mg 4 times a day.

Hi there, I totally get your fears, when I got the diagnosis they gave me a prescription for 3 times 30 mg a day.
i also thought, what if i dont have mg?
So, I started 10 mg.
A cholinergic crisis is scary, but I dont think you can get it from only 30 mg. Just try it, if you find it too scary try 10 or 20 mg the first time. Ask someone to be with you. Mestinon works fast, so if it is too much, youll know soon enough.
Anywaym Im on 6 x 90 mg now, and still no cholinergic crisis.

Good luck!

The fact that you tested positive for the antibodies means that you have MG. The fact that you tested negative the second time doesn't mean anything. It's pretty common for people who have MG to test differently at different times.

I hope I can reassure you about the Mestinon. 30 mg. is a small dose. If it's too much or you don't need it, you'll get diarrhea, or you'll have small, painless muscle twitches, or your mouth will water a lot. In other words, there are relatively harmless indications that you're taking too much--it's not a crisis or nothing. So if you take the half-pill and it doesn't really do anything, don't be afraid (if the doctor tells you to, of course) to take a whole pill.

Mestinon has a short half-life. Four hours after taking it, it's pretty much out of your system. So if you take it once a day and it helps, then your doctor should tell you to take it three times a day, or every four hours.

Abby

Thanks so much for your very helpful replies.

Abby - I'm glad to hear that 30mg wouldn't do that much damage even if I didn't have MG... I think I might split the tablet the first time to see what happens - feeling very nervous about it. Then again, I have read that Mestinon is sometimes prescribed for constipation - presumably for people without MG, and they don't pop their clogs after taking it! I wonder what sort of dose they're on...

Anyhoo, are there any nasty surprises I should expect from the Mestinon other than an upset tummy?

Thanks again! x

Hi lawgirl,
The posology of Mestinon for constipation is 60 mg in the morning and 60 mg in the evening...so don't be afraid!
Don't take your tablet on an empty stomach, a glass of water, a cookie, a fruit would do the job.
And above all, relax...stress is not good for MGer.
Maurice.

Oh thank you, Maurice! That is very reassuring x

I went into remission suddenly and I continued to take mestinon as prescribed. I had horrible stomach cramps and diarrhea. I doubt a moderate dose will do serious damage. I am no longer in remission and just started taking it again. I always have some issues with mestinon. I hate the drug - I just like to swallow, read, walk, etc so I take the med.