• glen

    Member
    June 5, 2024 at 10:59 am

    I take Pyridostigmine 180mg ER once in the mornings. I do have eyelid twitching and other random twitches during the next two or three hours after I take it. I also sometimes have trouble moving my tongue during that time which makes it difficult to speak clearly. This is annoying, but the benefits of taking the medicine far outweigh this side effect in my case. As I’m reading everyone’s experience with cramping, I feel very grateful I do not currently experience that.

  • jeri castellanos

    Member
    June 5, 2024 at 2:49 pm

    I have Ocular MG, not generalized, but I have been taking 180ER for over
    10 years. I dont get twitching, but i do get severe and debilitating
    cramping. And nothing i do gets rid of it. I cant touch the muscle as it
    is excruciatingly painful, so i cant rub it out. And if it move or
    stretch the muscle, it moves to a different part of my leg/foot. The
    only thing i can do is walk. Nonstop. for hours. I have told 3
    neurologists and they all tell me that they have NEVER heard of muscle
    cramping due to mestinon. After reading this it is nice to know that i
    am not losing my mind.

  • Mama

    Member
    June 5, 2024 at 10:26 pm

    I was diagnosed in July of 2023 with generalized Myasthenia Gravis. I take 60 mg three times a day. Recently, I have noticed my toes cramping. It does not last long but there is no other explanation except the medicine. I will talk to my neurologist when I see him in July.

  • Annie

    Member
    October 23, 2024 at 3:40 pm

    I’ve had the twitching, along with diarrhea, a few times in the past. My doctor said it was from too much Mestinon & cut it back a little each time. I’m now on 15mg of Mestinon once a day & she considers me in remission. I want to add that the twitching from Mestinon started a couple years after my Thymectomy in 1987. I know we’re all different, but this is what happened with me.

  • Annie

    Member
    October 23, 2024 at 4:11 pm

    I want to add to my prior post that if you experience twitching from Mestinon to talk with your doctor about it for advice.

    • David

      Member
      October 25, 2024 at 8:54 am

      Thank you for the information. I will use that next time I see my doctor.

  • Jo-Ann

    Member
    October 25, 2024 at 2:34 pm

    Yes, I had twitching in legs, hands, feet and neck muscles. It’s from the mestinon which i.had to stop due to severe gi issues. Twitching is almost gone now.

  • Sharon Haw

    Member
    October 25, 2024 at 2:46 pm

    I took it for 4 months after I was first diagnosed with generalized MG in 2019. It stopped my L eyelid drooping. Monthly blood tests showed my liver enzymes were increasing plus I could barely see to drive because of my right eyelid twitching, which I was told is common. My neurologist switched me to cellcept 1000mg daily. In 2023, I was again prescribed mestinon after surgery as an addition to cellcept in case I experienced more MG symptoms because it is fast acting and has a short life. I took it a few times when I noticed symptoms returning and it nips it in the bud. I’ve noticed the eyelid twitching quickly returns if I take more than 1 short acting mestinon pill in a day or if I take it on successive days so I only take it intermittently if needed. My neurologist renews the prescription annually so I have it on hand as needed.

  • Kent Moore

    Member
    October 25, 2024 at 3:20 pm

    Uncommon? Wonder who came up with that one…

    The twitching is very common, but, for me, tolerable. I customize my dosage of Mestinon as necessary, usually increasing my use during the later stages of time between my Vyvgart cycles. I sometimes taper back to almost zero Mestinon after I’m halfway through my infusions — and that will last for about 3-4 weeks before the need to gently increase my dosage. My muscle twitching follows the exact same pattern. More Mestinon, more twitching. For me, it tends to be worse in the morning hours and then seems to fade away. Maybe from activity…?

    Anyway, I don’t mind putting up with the twitching, especially compared to what life would be like without the Mestinon.

  • Tim

    Member
    October 26, 2024 at 7:42 am

    Muscle twitching from taking pyridostigmine is not uncommon. I’ve been taking this drug for 3-4 years and have experienced “muscle twitching” the entire time, but less so once I switched to using the 180mg SR caplets. Nausea and other side effects also subsided (but did not disappear) once transitioning to the 180mg SR. It helped me a lot.

    To even out my current dosage (300mg 3x daily) I take one 180mg SR caplet and two 60mg pills of pyridostigmine, three times a day. This medicine is not perfect, as it has an array of side effects. It also is not a cure for MG, but it does help me with some muscle strength issues. Without it I can barely stand, stand from a sitting position, and heaven forbid I ever end up on the ground. I’d be stuck there until someone strong could help me up. I gladly tolerate the twitching for the benefit in exchange.

    • David

      Member
      October 26, 2024 at 8:08 am

      What is an SR caplet?

  • Kent Moore

    Member
    October 26, 2024 at 10:25 am

    SR = slow release… I think

  • R. Wilson

    Member
    October 28, 2024 at 9:02 am

    I have always suffered from restless leg syndrome, even before I started taking Mestinon, especially at night when trying to sleep. One treatment that almost always works for me is to drink a small amount of tonic water, 1-2 ounces. The quinine in the tonic water somehow settles the nervous system and provides relief.

  • miche

    Member
    October 31, 2024 at 2:25 am

    I never had muscle twitching with mestinon but I much prefer the supplement Huperzine A; it works just as well as Mestinon without the side effects.

  • alexex777

    Member
    January 22, 2025 at 4:00 pm

    I suffer from muscle spasms and have been diagnosed with dystonia. In my case, cannabis has helped alleviate some symptoms, especially muscle spasms and involuntary contractions. Although I continue to follow my doctor’s recommendations for other treatments, adding cannabis to my routine has made a difference in managing the discomfort. I have been using this treatment for 9 days now and I feel positive changes in controlling and reducing muscle spasms. However, it is important to emphasize that this treatment is not for everyone, and consulting a specialist before starting is essential.

    If anyone in the UK reads this and is interested, I am using the dystonia medical cannabis treatment from Releaf (a clinic specialized in medical cannabis) and they are doing a great job.

Page 2 of 2

Log in to reply.