Hi Everyone-I am new to this forum & I was wondering if anyone out there on Mestinon had issues w/ side effects? I was on it when I was 1st diagnosed, but the dosage had to be increased a few times before I had any results. Then, I started having tremors & spasms. I went off the meds (per my Dr.) & the tremors / spasms stopped. However, the MG symptoms returned (drooping eyelids, double vision, muscle weakness). So, I went back on mestinon. My Dr. said this sometimes happens. Well, my twitching came back, but this time in my face. So I am off it again. I am frustrated as I do think the mestinon was helping, but I cannot handle the side effects. HELP!!!
I hope you all are well. peace.

Hey Nancylee, welcome to the mg site.
Ive had MG for nearly 5 years, and been on mestinon for 5 years. I have a twitch that affects my neck shoulder head area, my head flicks over to the right and my shoulder rises, I assume its from the mestinon, have never told the dr as its very intermintent and doesnt bother me, it must be awful to affect you badly enought to have to go off the mestinon altogether.
It does however affect my stomach etc, and have to rush off to the toilet sometimes, but I do make sure I take it with food, or it really plays havoc. Hope this helps

Welcome, Nancylee. I've been taking Mestinon for years. When I first started, back in the mid 70's, my neuro told me to start taking 1/4 tablet of Mestinon at a time, every 4 hours. Then the next day I was to increase the dosage by 1/4 tablet, taking 1/2 tab at a time, every 4 hours. Then the next day up another 1/4, so I was taking 3/4 of a tablet. I was to increase by 1/4 tablet increments UNTIL I got symptoms of overdose. When that happened, I was to drop down 1/4 tablet, and fix that slightly lower dosage as my optimum dose.
You might try that, since it is very dificult for a neuro to just tell you how much mestinon to take. Everyone of us is so different, and what is the optimum dosage one day may turn out to be not quite enough or slightly too much the next day.
Also, there is an antidote you can keep on hand for overdose symptoms. The one my Dr prescribes for me is Donnatal. It contains Atropine, which is an antidote for Mestinon. Of course, it shouldn't be used to deliberately mask symptoms of overdose, but rather to relieve symptoms of overdose on the occasions when you forgot to take your Mestinon with food or maybe took a pill too soon.
And like redtail says, take your Mestinon with food. Hope things turn out well for you.

Hi Nancylee, welcome to this forum.

I have tremors and spasms, mainly in my hands, arms and legs. The twitching
is due to mestinon. Somedays it's worst and I discover that the massages that are helping the muscle pains that I have are helping the twitching too.
Like Loisba and Redtail, I take mestinon with food.
Hope you can find the best way to deal with the things that are disturbing you.
Bluestone

I have twitching, spasms, and Jerks all over......some of it is due to the mestinon, but mostly to my RLS....my doc said that it can move from your legs all the way up your body in severe cases, esp. if you have other issues going on. I am on requip but it doesn't help much. She also said it had alot to do with the ferritin level in your iron. If it is low it can cause your body to spas and jerk. my hands look as though I am going the dts all the time. I can be laying down and my hips will jerk and rotate without me doing it or my leg will just kick out like someone is testing my reflexes. It is crazy....I hope you find a solution. But I hope your doc told you how important it was to cont. the mestinon if you are not in remission. You don't want to go into a crisis.

Wishing you well,

Barb

Spams and jerks are sometimes an indication of a Mestinon overdosage.
You may try to lower it by increasing the timespan between two takes, normally 3 to 4 hours for a 60 mg pill.
Good luck