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What dose of Mestinon (Pyridostigmine) and how often has worked well for your body?
What dose of Mestinon (Pyridostigmine) and how often has worked well for your body?
How often has your doctor had you adjust the dose, if at all? What warranted the change in dose?
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52 Replies
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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.
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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.
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Aspirin thins your blood and improve circulation and would make you feel better if your blood was too thick; good idea to see the cardiologist.
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does this help you double vision? Please let me know, my eyes are killing me! Headache’s.
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Let me know if that still works.
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I take 60 mg Mestinon three times a day.
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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.
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If you have ALL the symptoms, then you may need to up the dose but ask your Nero.
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hope it doesn’t get worse, then you’ll need more Pyridostigmine.
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I take two one eighties a day.
Much easier for me than the four times a day 60’s
Never could keep up.
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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
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I am also on 2 180s a day. Occasional diarrhea and does not fully alleviate double vision but all in all fairly effective.
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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
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I get Mestinon 180mg ER from CVS. Either regular pharmacy or mail order. I only had a delay due to shortage one time in 10 yrs.
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What eleviates DOUBLE VISION?
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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>
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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.
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Double vision also????
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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.
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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.
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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. …
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Been on cellcept for 14 months plus 7.5 prednisone going to 0 in 4 months. Takes 6 months to a year plus to get the full effect of cellcept. Haven’t taken mestinon for a couple of months. I have trouble walking with an uneven gait and balance are the only symptoms now plus the weakness or fatigue. 71 years old and 18 months since MG crisis and diagnosis.
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Mik, thanx for the reply regarding CellCept.
My Neurologist just put me on CellCept about two weeks ago, starting out with only 250mg dose, once in the morning and once in the evening.
Once my body got used to that dose, I added another 250mg to each dose, per my Neurologist, while still taking the Mestinon.
Hopefully after a period of time on the CellCept, I can also get off the Mestinon.
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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.
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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.
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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.
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I too take the modafinil, it has been a godsend. I have severe fatigue, I started on 100 mg, now at 250 mg. After 6 months.
I am only able to periodically take pyridostigmine. Gastric issues way too much. Also on 6.5 mg prednisone and vyvgart.
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What Brand of Pyridostigmine do yo take? The only brand I now take is by Major Pharmacuticals. The others give me Diarrhea, gas and bloating. Whats your experience and what brand do you take?
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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. ☺
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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
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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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I finally perfected a mestinon dose for me & I have been on the same regimen for years. I also take IVIG monthly and Imuran. Previously on cellcept that stopped working after a couple of years.
Mestinon 180mg ER twice a day (Every 12 hrs) and 60mg 3 times a day.
At times I have to take 90mg when active or flare up instead of 60mg or some days only take 60mg two times a day
I originally only took 180mg ER at night to get up in the morning. I eventually asked my neurologist to try it during the day. When I worked, I often wasn’t able to stop what I was doing to take a dose or I wasn’t able to eat something with it. The ER allowed for a more consistent dose in my system when I had to delay the 60mg. It also has less side effects but Im guessing due to the slow release, it just isn’t enough for me to drop the 60mg tablets.
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4-5 60mg/day. Really varies based on how active I am. If I’m sitting at my desk job I can almost forget to take the pill. But when I am active and moving around I need a pill every 4 hours.
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I take 8 60mg a day for the last 10 years, plus cellcept. I have 3 neurologists and they say keep doing what you are doing. I’m tired of it, but leary about adjusting it.
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I take two 60s at 8am & 2 more at 5pm, Then a 180 at night. Been doing that for 2 to 3 years.
5mg prednisdone at 8am.
Imuran – 2 x/day 8am and 10 pm with the 180.
Always have a bit of double vision now – not nearly as bad when gMG hit me.
Diagnosed in 2019 – first started symptoms in 2017. I consider myself to be in a Stable condition.
Good luck,
Scott🙂
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I’m now on two 500 MG of mychophenolate twice a day, 15 mg prednisone once a day and 120 mg of Mestinon every 3 1/2 hours. However, I’m in my fifth week of constant double vision.
I’m hoping my Vivgart treatments will eventually take care of my double vision.
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Hope so!
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I take 60 mg of Mestinon 3X a day and Glycopyrrolate 2MG as well. It helps with the less frequent bathroom issues.
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When I was first diagnosed, about 13 years ago. I was on Mestinon 60mg 3X per day one more as needed for fatigue and Azathioprine 2X per day. This combination worked well enough for many years. After about six years, my original Neurologist retired from practice and my new Neurologist took me off of the Azathioprine. Then about four years ago, I started noticing that my swallowing issues started to come back, the Mestinon was increased to 4X per day. This regimen was working well until last summer (2024) when my doctor raised the Mestinon to 5x per day, because I was having trouble speaking and swallowing whenever I was fatigued, usually from doing yard work. We take each day as they come. And I make sure to take rest stops.
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So my question is for all these people taking a bunch of mestinon each day for years. Do you consider your MG under control?
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Medically controlled symptoms is the goal to let us live as normally as possible. Of course, it’d be nice not to need infusions, immunosupressives, or neurotransmitters, or other meds. I look back fondly at my 13-year remission with no symptoms nor meds in the hope that it might happen again. (Sigh…) But, whatever it takes to improve my quality of life is worth the bother to me!
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180mg extended release 2x a day with Azathioprine 2x a day.
If you’re on prednisone you need to get off of it. It’s not a good long term treatment guys. Lots of problems with long term treatment!!
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