Mestinon and muscle twitching

[David]

Yes I have had muscle twitching and I can only assume it is from the Mestinon. After awhile, my dosage was reduced but I still have occasional twitching. I have never has a crisis thank the Good Lord and nothing I have found gives me relief from either the twitching or cramping.

[Keith Wilson]

Yes I noticed muscle twitch after being on the medication for approximately 16 months. I noticed it in my hands, legs and one eye. Dosage has not been decreased, and has never turned into a crisis.

Thank the Lord!!

[Lou DeYenno]

I have muscle twitching and cramping on a regular basis, although it is not to noticeable to others. I used to take 180mg slow acting 1x during the day and half at bed time but now only 1x per day. That seems to diminish the twitching and cramping.

[Gina]

It is from mestinon – sometimes it happens to me when I take too much Mestinon – In addition to the gastric issues..

[Robert Ballentine]

I’ve experienced the twitching frequently over the 12 years that I’ve been taking Mestinon, but have never had a crisis from it. The twitching is a minor distraction for me, and my neurologist is not concerned by it

[JOHN A]

In the beginning 18 months ago and taking 3 60 mg mestonin, twitching of calf mussels would occur in the evening and some cramping in bed. Now only on one 60 mg, no longer have either. I’m very lucky to be controlled by this amount but only had ocular issues so far. My symptoms began one month after having Covid 19 and am inclined to believe it screwed up my immune system resulting in MG.

[LIZ]

I have generalized MG. I’m on 60mg mestinon 3x/day, although per my neurologist I decrease to 2x/day when I’m feeling strong and healthy (couple times per week). I have rather frequent eye twitching, and less often hand shaking and leg twitching. None are too bothersome, especially in comparison to how I feel off of mestinon. My worst side effect is constant stomach issues. They can be pretty severe but I’m scared to try a new medicine because I know mestinon works. Has anyone switched meds and preferred new medicine? If so, to which one and why. Thank you!!

[Marlene Laird]

I have generalized MG that started back in the 90’s and was diagnosed in 2007. The twitching is from Mestinon – it happens to me when I take too much Mestinon. I was taking 60mg every 3 hours while awake, but it wasn’t quite enough. So we increased it to 60mg and a half of a 60mg pill. That’s when the twitching started in my muscles, as well as my facial muscles. Also I began having gastric issues that were near unbearable and if I drank milk or anything with milk in it, the symptoms were even worse. So I decreased to one 60mg plus 1/4 of another, and the twitching and gastric issues stopped. Every great now and then I have a little bit of those issues, but it is mild and doesn’t last long. I can drink milk again! The twitching etc. never did send me into crisis.

[John]

Oh yes…..when I first started and on 5/6 lots a day, about 2 weeks later, the cramps in my legs which lasted with intense pain for about 45 seconds, normally when just getting out of bed or stretching, were pretty painful. Then the eye muscle twitching started, and my hands started to lock up entirely and couldn’t move them at all. If I was holding a phone for instance or cutting up toast, they would just go into lock mode and the fingers would become gnarled and start curling..Horrible experience but over the months and this year in particular, rarely get them now thank goodness, but am down to just one tablet or when needed.

Mind you, in the early days and when cutting up the toast or whatever, this was mild in comparison to cutting my fingers several times, as everything was at least 2-3 inches to the left or right and not seeing correctly with the double vision.🧐

Onwards.

[Tonykrony]

I have had muscle twitches from day one. Started in 2012, still happens today. I have not got a Neuro Dr. that I’ve seen on the last 10 years to even react to my complaints about my muscle twitches. So I did my own research and changed my times that i take the pyridostigmide 180 MG ER tabs. Old times were one tab in the am, and one tab in the pm at 8:30 pm. New time one tab at 7:30 am and one tab at 2:30 pm, Daily. It has reduced the severity and frequency of muscle cramps and sharp pain in my legs and feet. Wish I could say it stopped… but sad to say it has not. But much better.

My Neuro Dr. has not commented on the change as positive or negative.

So if the pyridostigmide 180 MG ER is working for you and your still having severe leg cramps try changing the time you take it. High levels of the drug in your blood while sleeping can cause the severe leg cramps. Worked better for me.

[Dev keshav]

I have generalised mg. I was taking pyridostigmine 60mg 3 times a day. Also on 100mg azathioprine daily. From the beginning I would have cramps regularly. However about 4 months ago the cramps were excessive. Any movement I made would make me cramp. My back, hands, legs, stomach. I then stopped taking the pyridostigmine for a few day. The cramps stopped. I then started taking the pyridostigmine again. The severe cramps started again. So I stopped. I now only take azathioprine. So far I’m ok. I don’t see a neurologist because they don’t accept medical insurance and I can’t afford to pay the cash.

I might be in remission, but I can’t tell. I also cannot take a chance to stop azathioprine. If I go into a crisis it takes a long time for the effects of azathioprine to work again. I don’t believe that a neurologist can know for certain what to do. They judge according to the knowledge they have and what the patient says. I now feel it’s better for me to judge myself. I always carry pyridostigmine in case I need it. I know we’re all different and don’t suggest anyone else does what I’m doing. But it have to take the risk myself.

[Cathie]

Yes. Have MUCH twitching in the AM after Mestinon dose, regardless of dose size. It is mainly in the abdominal area and Is immediately followed with a bowel movement. Suspect MG affects nervous system in GI area…

[Phil]

So far, I have ocular MG. I take 60mg mestinon 4x per day. I get some occasional twitching of my lower eyelids, but otherwise ok.

[Dean Counts]

I’ve been on Mestinon 60mg four times a day for over 10 years. That and a Thymectomy many years ago seem to work well keeping my Myasthenia stable. I do have muscle twitching, mainly in my lower legs, but it doesn’t really bother me other than it can be annoying. A little scary at first since my Neurologist casually mentions it can be a symptom of ALS. But he said it was benign twitching and is caused by Mestinon. Cramps bother me more but my Neuro recommended using magnesium supplement and that helped a lot. Still have cramps in lower legs and feet from time to time but I can deal with that.

[Margaret]

I have taken pyridostigmine for 3 yrs since being diagnosed with MG. I have some muscle twitching but a lot of foot and leg cramps at night. My doctor is not concerned. I manage with foot exercises and foot massages at night. Really helps. I developed MG immediately after receiving my covid shots. Miserable.

[June Robertson]

I have been taking Mestinon for over 60 years. Eyelid twitching is an occasional occurrence. I reduce the dose slightly and it ceases.

[Diana L Ramsey]

What about one-sided facial spasms?

[Andy Coyne]

I get twitching around my eyes regularly and in my calf’s as well. It’s independent of dose of pyridostigmine. The other problem I get is severe cramps at night particularly in my right calf! It can pull my foot so hard that it’s a straight line from my knee to my big toe and is excruciating! I eat bananas to get some potassium, it helps a bit but I still get them.

[Sally W Hardter]

Definitely have muscle twitching and definitely linked to Mestinon for me. I started using it when diagnosed with generalized MG in 2013 with ptosis and notice a lot of eye twitching when I use it. I started with 60mg 3-4 times a day which was too much. I had abdominal cramping, loose stools and various muscle group cramping. I have been successful using 30mg three or four times a day. My neuro definitely says the symptoms are Mestinon related so I can’t hardly believe the manufacturer does not recognize this! The drug helps with symptoms but not as much as I’d like 🙂

[Sharon Haw]

I was diagnosed with generalized MG in March 2019 and took Mestinon 4 X 60mg daily until Aug. 2019, and as needed only in the past year due to a return of occasional double vision and muscle failure. In 2019, muscle twitching was so bad in my right eye that at times I couldn’t see properly when driving, worse in the morning. I also had elevated liver enzymes which was attributed to Mestinon so I was switched to Cellcept. I don’t like being on immune suppressant medication and wish I could return to mestinon or another med that doesn’t compromise my immune system.

[Lisabeth Wotherspoon]

I was diagnosed in 2017 with generalized mg and put on 120 mg mestinon 5x day. When I struggled with severe cramping day and night for years, my neurologist brushed it off, never even mentioning that it might be a side effect of the mestinon. I finally changed doctors and he believes my cramping was caused by the high dose I was prescribed. He reduced the dose to 60 mg 3x a day, but the cramping is still very disruptive in my life, especially to those who witness my pain.

[Kelley]

Initially I responded best to a dosage of 120 mg three times per day, but then I started having muscle twitching or fasciculations throughout my body, mostly concentrated in my tongue, neck, and back. I reduced to 60 mg three times daily but continued having the twitching late at night or after a long day. I have since switched to Huperzine A (200 mg in the morning and 100 mg in the evening) and I don’t have any twitching with that. However, I haven’t been able to get a clear answer on whether MG patients need to cycle Huperzine like regular people do so that it won’t build up in our brains. So just to be safe, I take one week off every month or so and to back to Mestinon. And I hate that week! Lol

[Quentin]

I had severe leg twitching when I was on Mestinon it was pretty awful, 1 about every 14 to 20 seconds. I also had quite frequent what I would call “whole body electric shocks” but on the flip side Mestinon allowed me to see again after 2 weeks of not being able to properly open my eyes. I spoke to my Neurologist about it and he didn’t really know what was going on, but still kept me on the Mestinon. After a year of that and a massive life style change I just stopped taking it and I am now on just prednisone. The twitching has gone and I am grateful of that.