• lin

    Member
    January 16, 2025 at 12:41 pm

    4/day plus Azathioprine 2/day. I’ve been on this regime for 2 years and pretty stable. Dr. said I can add up to 2 more Mestinon as needed but keep track why, stress, no rest, lots of walking etc ! Since I retired I haven’t needed an extra dose.

    • Joe

      Member
      February 4, 2025 at 3:36 pm

      I have something strange to add.im seronegative and have been on ivig for about a year now.i went to my cardiologist for a checkup and he put me on an aspirin a day.81 mg for the last two weeks and my mg systems suddenly got better.dont know if it is the aspirin or not.but just thought I would mention it here.

  • Mama

    Member
    January 17, 2025 at 3:02 pm

    I take 60 mg Mestinon three times a day.

    • cupcake

      Member
      February 4, 2025 at 9:12 am

      Hi there I’m only on 60 mg 1 times a day, I don’t know if I should up the dosage, what symptoms do you have to reach 3 x times a day. I don’t know how to approach my GP . Hope you don’t mind me asking.

      • paul spychalski

        Member
        February 6, 2025 at 10:01 am

        If you have ALL the symptoms, then you may need to up the dose but ask your Nero.

  • wilson

    Member
    January 17, 2025 at 3:15 pm

    I take two one eighties a day.

    Much easier for me than the four times a day 60’s

    Never could keep up.

    • chz

      Member
      January 18, 2025 at 10:11 am

      Hi, can you tell me where you get the 180 mg er tabs that you use? My pharmacy is Express Scripts and they have not been able to supply me with any since April of 2024. They claim it’s a Worldwide Manufacture issue. Thank You

  • Charles Karcher

    Member
    January 17, 2025 at 3:21 pm

    I am also on 2 180s a day. Occasional diarrhea and does not fully alleviate double vision but all in all fairly effective.

    • chz

      Member
      January 18, 2025 at 10:11 am

      Hi, can you tell me where you get the 180 mg er tabs that you use? My pharmacy is Express Scripts and they have not been able to supply me with any since April of 2024. They claim it’s a Worldwide Manufacture issue. Thank You

  • Robert Richardson

    Member
    January 17, 2025 at 4:03 pm

    Originally prescribed 3ea 60mg daily, with the neuro recommending 4th and even 5th depending on symptom variation; currently 4ea 60 mg daily, and I have a huge stockpile backup.

    I’ve always responded quickly to p tabs and don’t ever want to be without. Some relatively mild to moderate loose stool and bubble gut feeling have been tolerable.

    <font color=”rgba(0, 0, 0, 0)” face=”inherit”>I’ve been on 2000mg cellcept for about 8 months now, in my </font>neuro’s<font color=”rgba(0, 0, 0, 0)” face=”inherit”> effort to improve overall strength and reduce these gastro symptoms, which seems to be working. My ADL scores are as low as ever.</font>

  • John

    Member
    January 21, 2025 at 5:44 pm

    I have taken 60mg of pyridostigmine 4x per day for almost 3 years since diagnosis. That combined with monthly IVIG manages my MG pretty well. I’m a 68 yo male.

  • Lou DeYenno

    Member
    January 22, 2025 at 7:22 am

    I was originally on 3×4 60mg mestinone per day but switched to 180mg 1x per day. If I have a stressful day, I will add 1/2 in the evening.

  • alexex777

    Member
    January 22, 2025 at 4:26 pm

    I’ve been taking Mestinon for a while now, and the dose that works best for me is 60 mg, three times a day. My doctor did adjust the dose a bit when I was feeling too tired or had trouble with muscle weakness. We’ve made small changes over time, depending on how I was feeling. It really depends on your own symptoms, but my doctor has been great at helping me find the right balance.

  • EngineerPhil

    Member
    February 3, 2025 at 7:41 pm

    I was originally on Mestinon, 30mg 4 x day, which lasted for a short period of time. I guess it was an initial trial period, to see how my body handled the meds. Once I was used to the meds, my Neurologist told me to, step it up, to a full pill 60mg 4 x day, which has been working fine.

    If I get tired or my eyelids need a little extra lift, I just take an extra dose to suffice.

    My Neurologist is pretty good and actually heads up a Myasthenia Gravis Clinic in my area. Unfortunately, she doesn’t like prescribing the Mestinon 180 ER scripts, stating that they start in your system to long, so I don’t have a chance to see if those will work for me.

    My Neurologist has also been talking about putting me on CellCept, to possibly put the MG into remission, so we will see where that goes.

    I am curious how others have felt while on CellCept. I haven’t really read any bad reviews for people while on CellCept, although, I understand it does take some time before you see any changes or good results.

    May we all, Live Long and Prosper. …

  • Jay

    Member
    February 4, 2025 at 4:27 pm

    I have been on a 60mg dose of mestinon 3 times daily along with 10mg of prednisone and Vyvgart for over 18 months. It has worked sufficiently for me.

  • Anne-Marie

    Member
    February 4, 2025 at 10:06 pm

    4x60mg every 4-5 h. I have had refractory MG for 27 years. Once Rituximab stopped working the dose went from 2 x60 mg every 3 h up to 3×60 mg every 1-3 h when IVIG was cut back before we worked out the Rituximab stopped working and then up to 4 x 60 mg, which gives me the longest gap between doses , as 3 tablets only gets me 3h. Finally some predictability and regularity with Ravulizumab.

  • Barbara E.

    Member
    February 7, 2025 at 3:29 pm

    In addition to my weekly Hizentra SC infusion and modafinil once daily (for extreme fatigue), I take pyridostigmine bromide daily – like most of us. My long-time 60mg tablets were later switched to the 180 mg extended release tablets.

    I know the 180 mg extended release tablets are suppose to last about 2.5 times longer than 60mg tablets. But, when symptoms were really bad, they simply didn’t have the desired duration of effectiveness. About a year ago, I needed up to 5 dosages each day of the 180mg tablets. Luckily, as I improved, my dosage reduced to three daily and now twice a day. At this point, my doctor told me to listen to my body and adjust as needed.

  • CAPacheco

    Member
    February 7, 2025 at 5:51 pm

    I was on 4 – 5 180 mg. Pyridostigmine ER tabs until about 6 months ago. Started on Ultomiris and began taking less Pyridostigmine (1/2 tabs). I’m currently on four 60 mg. tabs daily. ☺

  • izzy

    Member
    February 7, 2025 at 8:28 pm

    Mestinon 60mg 3 x daily for me along with monthly IVIG infusions have kept me pretty stable. Been on this regimen for over a year now. Weaned off the awful prednisone finally, whew

  • June Robertson

    Member
    February 7, 2025 at 10:15 pm

    2 x 10 mg tablets in the morning and 1 or2 10mg tabs later in the day if physically active. I was on 20x 60mg Mestinon before my thymectomy when I was twenty(I am now 80). Plus I eat healthily …lots of fruit and vegetables, minimal wheat and sugar and I walk and/or swim daily and take Astragulus, an adaptogen herb most days. It has helped a great deal. I feel lucky, and sad when I read of others’ struggles…I have been there.

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