Mestinon User Reviews & Ratings

• zenar...
• Taken for 6 months to 1 year
• October 11, 2015

For Myasthenia Gravis "I had lost the use of my arms and hands, couldn't swallow nor chew....had double vision and often lost the ability for speech. Doctors believe it had progressed nearly 4 years before diagnosed. Within a couple of hours of starting the medication, functioning began to return. I take 3 60mg. tablets per day and am able to function quite well now."

• Anonymous
• March 31, 2010

For Myasthenia Gravis "Mestinon helps everyone differently. I started out with ocular MG. Apparently, this drug helps most people with their ocular MG, but it doesn't do anything at all to improve my eye. My case of MG rapidly generalized, and difficulty breathing was my 2nd symptom to manifest. Mestinon improves my breathing issues somewhat, but doesn't take the shortness of breath away completely. Same with my arms and thighs; it helps, but doesn't make the weakness disappear altogether. Mestinon can cause diarrhea, but most likely won't if taken alongside a meal or with a small snack. It must be taken every 3-4 hours. Mestinon is one of the only drugs out there for MG with the least amount of unpleasant side effects."

• Anonymous
• Taken for 2 to 5 years
• June 13, 2012

For Myasthenia Gravis "I am a 33 yr old female who was diagnosed with level 4 Myasthenia Gravis about 4 1/2 yes ago. I've taken Mestinon everyday along with a large assortment of other medicines for my condition. I have found it greatly increases my mobility and function, compared to not taking it. The side effects wore off after about 6 months of use, and I really don't have any now."

• mar
• November 16, 2008

For Myasthenia Gravis "I've taken Mestinon for 3 years, since I was first diagnosed with Generalized MG/Optical MG. There has been a great improvement in my weakness. I'm able to keep my eyes open, I don't lose my balance nearly as much, fall less often. I take it every 3 hours and if I miss a dose, the weakness increases. It's quite like taking a pain reliever for a severe headache in that it lessens the symptoms, but they will return as it wears off."

• Franko
• December 11, 2020

For Myasthenia Gravis "I have Occular Myasthenia Gravis and after being initially put on 50mg of Prednisone and 25mg of Mestinon once each morning my symptoms disappeared and my vision returned to 20/20 after only 9 days, prior to that I had extreme double vision. Now I'm on 3 doses of 60 mg Mestinon and one dose of prednisone eventually aiming on no Prednisone. Certainly urinating more and have diarrhea. Hoping I'll acclimatise to the Mestinon as having my all important vision back is fantastic. Cheers all."

• JJ71
• January 25, 2016

For Myasthenia Gravis "I am a 44yr old male recently diagnosed with MG since Nov 2015. I take 90mg 4 times a day. My medication generally last 5hrs. My MG inolves slurred speech, difficulty swallowing, teary eyes, difficulty pushing food around with my tongue, a very weak bite. My medication usually kicks in after 45m-1hr. My speech improves although there is still a hint of a slur but much improved. Swallowing improves but still not confident. I always have water just in case. No diarrhea at all and only once I had severe cramps but that was while I was adjusting my dosage. Taking 2 60mg tablets will probably do that. Have vomited once but I function much better while on Mestinon."

• Ray...
• Taken for less than 1 month
• March 6, 2022

"Mestinon is being used experimentally in Boston at the Women's hospital for treatment of chronic fatigue syndrome (CFS/ME). I do not know what dosages they are using. I have been taking 15mg/day which apparently is a very small dose. I have no side effects. I have suffered for 40+ years with a moderate case of CFS. Even with the help of provigil and lyrica I still suffer from social isolation and little energy to complete anything outside of work. I can only describe the relief of CFS symptoms after taking mestinon as nothing short of miraculous. I have stopped the provigil and feel great. The real test will come when I subject myself to a rigorous work-out and see how my usual symptoms of post-exertional fatigue present themselves."

• Super...
• July 31, 2015

For Dysautonomia "The good: less dizziness and blood pooling in legs due to POTS. The bad: I have all of the negative common side effects: I sweat horribly, I have a regular cough with mucous, I drool a lot and not just at night, I have frequent loose stool, my eyes are super blurry sometimes AND my tongue cramps so sometimes I sound like I've had a stroke or a severe speech impediment. Dose: 30-60 mg with dinner and 180 mg time span before bed. (I can't handle the side effects during the day) I have been on this for over a year. I take this and accept the side effects because without it I would not be able to work due to my brand of POTS. The side effects aren't consistent and my body metabolizes things differently every day."

• svhar...
• Taken for 1 to 2 years
• October 29, 2022

For Dysautonomia "It took me quite a while to tolerate mestinon, mostly nausea and headache and twitchiness, but after being on it for about two years I have almost no side effects. It wears off after several hours and I take it 3 times a day. It is difficult for me to take it at night but would probably help even more if I could. I also take Magnesium which stopped my ectopic heart beats and muscle rigidity, cramps and spasms. I was pretty lucky to be prescribed this so soon after having Covid."

• neuro...
• Taken for less than 1 month
• June 10, 2014

For Myasthenia Gravis "Double seronegative MG with only ocular symptoms for going on three years -- slight ptosis and (typically torsional) diplopia during flare ups. Edrophonium test was very positive; EMG negative. Mestinon induces absolutely no detectable change for me -- which seems odd if the edrophonium test was positive. Stress levels and possibly pollen levels tend to exacerbate symptoms. Symptoms can be held at bay with 5mg prednisone every third to fourth day heavy exercise regimen (35-45 miles running per week) diet low in wheat but high veggies and protein. Asymptomatic periods have stretched up to 9 months."

• Mammy
• June 29, 2014

For Dysautonomia "I've been on 30mg of Mestinon two times a day for about three months, I had diarrhea the first few days, more shortness of breath, and some drowsiness, after that I started noticing improvement in my cognition (the worst part of my dysautonomia & Fibromyalgia, to me), and I am able to keep 'doing' things longer than I could before. I do notice when it begins to wear off and I may go up to three times a day on it. I'm very pleased. The only negative I have is big increase in eyelid twitching, and awful muscle spasms in my feet. My neurologist has had me start B-6 for this and it helps a lot."

• Edwin...
• Taken for 6 months to 1 year
• June 21, 2017

For Myasthenia Gravis "Thymus tumor caused Myasthenia Gravis. Tumor was removed (thymectomy) but still have severe muscle problems, treated with pyridostigmine 60mgx5 and 5 mg prednisone x2. Which gives me about a 1-2 hour window of better muscle control per dosage. Often times causes severe cramping in neck, head, face, hands, legs.., I take magnesium to relax the muscle cramping. Also have less control of bowels and urinary. Not sure if meds help or hinder in that area. Food has less taste too."

• Christy
• Taken for 1 to 6 months
• May 22, 2023

For Dysautonomia "I’ve tried many drugs for my POTS/ Dysautonomia with no success, but Mestinon is really helping me. I’m able to function more and my fatigue is reduced. It sometimes has a side effect of extreme perspiration , but I can manage. It has been a game changer for me."

• CJW
• Taken for 6 months to 1 year
• August 30, 2023

For Dysautonomia "I've been taking Mestinon for about 6 months. I experimented with dosage in the beginning, but what I have found most helpful is half tablet (30mg) 2x daily. I had a few side effects in the very beginning like some dizziness and looser stools, however I tolerate this medication very well, and it has become more and more helpful over time in terms of less fatigue, improved energy, and cognition. This is the first medication I have tried for my dysautonomia (and ME/CFS) that has been more helpful than the side effects were harmful (and I have tried many). Really grateful for this drug!"

• D1ano
• September 1, 2018

For Dysautonomia "I have been on this a week and seems to be significantly helping breathing issues at night, overall dryness everywhere, constipation, nausea and urinary retention. Side effects though are very unpleasant- very blurry vision (especially at night or in darker lighting), headaches, pelvic pain, muscle cramps, and overall fatigue. I am currently taking a dose of 40mg 3 times a day."

• Aalexpp
• Taken for 2 to 5 years
• March 13, 2022

For Dysautonomia "Mestinon used to be a very helpful medication for myself, I have AAG/pandysautonomia along with many other diagnosis’. I personally found this medication helped quite a bit for the first while I was on it. (I’ve been on a lot of different medications and this one helped more than any other thing for my dysautonomia and my blood pressure issues particularly.) Anywho my blood pressure and other related things were somewhat stable for a little while after starting Mestinon but it only lasted for a couple months before I became too tolerant and my body was no longer getting help from it, the opposite in fact.. sadly we had to discontinue it since it was only causing side effects and nothing beneficial but I’ve gone on it a couple other times for short periods after being off of it for a long while and it helps again, I find it is very useful to use when in a particularly bad flare and only need it for a little while so it keeps it’s effects if it helps you :)"

• Anonymous
• September 16, 2021

For Myasthenia Gravis "I was recently diagnosed with Myasthenia Gravis. I get double vision, droopy eyelids, muscle weakness and muscle fatigue. I started on Mestinon 60mg 3 x a day and 25mg Prednisolone and tapered down 5mg every week. It worked and I felt so much energy but then my medication changed to Mestinon Timespan 180mg and it caused me very painful stomach cramps and excess flatulence and diarrhoea. For 1 month I hoped my body would get used to it but I couldn't handle it anymore. I told my doctor and she said to take half a tablet 1 x a day and so far no bad side effects and only mild stomach cramps. My MG haven't returned. I make sure to eat with the medicine and drink lots of water."

• Anonymous
• June 22, 2010

For Myasthenia Gravis "This medicine gave me great relief within few hours of taking it. However, I get really painful cramps in my stomach. I realized I get hungry more often. I have been on it for about three years. Within these three years I have taken about six doses. I think it is great."

• POTSy...
• Taken for less than 1 month
• February 17, 2017

For Dysautonomia "I started on 30mg 2x/daily. I had initial loose stools, but have gone back to constipation. I didn't get much relief from my tachycardia, and also noticed an increase in body twitches (not tremors). I'm now trying 60mg 2x/daily and I still have the increase in twitches and most notably, headaches (worse than the normal every day ones), and breathing issues (I already have asthma and laryngospams). Not sure any benefit is worth these side effects, but it's only been a couple of days, so I'll give it a little more time."

• Hillary
• Taken for 2 to 5 years
• February 27, 2023

For Myasthenia Gravis "I have been taking Mestinon for 2 years for generalized Myasthenia Gravis. I take 30mg three times a day. Unfortunately I have severe diarrhea, stomach cramping and other side effects including muscle cramping. I take Imodium but sometimes it doesn’t work. I eat only rice, toast and tea. I wish there was a better medication for MG with less side effects."

• randa...
• Taken for 10 years or more
• October 3, 2021

For Myasthenia Gravis "I started taking mestinon when I was first diagnosed in 1999, however in 2004 I had a thyroidectomy and I feel a lot better, I still take 6 pills a day and 2 Immuran pills but I am doing almost a 100% better than I was before the surgery. If I don't eat enough my stomach will cramp badly, so I try to coat my stomach to prevent it, I can also tell when its time for a dosage as well. Before the surgery I couldn't get dressed, drive on the highway (could not see the highway signs), drive at night, the lights hurt my eyes and I was very weak, had to take family medical leave from work."

• Anonymous
• March 31, 2012

For Dysautonomia "Starting taking this a few months ago for dysautonomia and the POTS secondary to it. It helps the low blood pressure, low body temperature, and the gut-transit issues. It does not help the nerve pain or cognitive impairment. Sometimes when I take it a tad too soon (or even sometimes when I take a normal amount at a normal time) it will help my guts, but I will have a lot of difficulty breathing. "

• Charlie
• July 24, 2022

For Myasthenia Gravis "Diagnosed with MG four months ago after having weakness in chewing and swallowing. I had been waiting for symptoms to come before taking 30 mg of Mestinon which seemed to help pretty quickly. My Dr. Suggests taking 30 mg twice a day and not wait for symptoms to occur. I will do that even though I don’t want to do it that way."

• Mazen
• Taken for 6 months to 1 year
• October 25, 2021

For Myasthenia Gravis "Mestinon helped ease my symptoms but did not completely relief the pain. Neck and shoulder cramps and pain still persist especially in the evenings and at night. I have been on mestinon since I was diagnosed about 6 months ago. Hoping with long term use it will improve my symptoms"

• Anonymous
• Taken for 1 to 6 months
• September 14, 2022

For Dysautonomia "I had been on Mestinon for 6 months, in the mean time I felt bad from the beginning. My brain fog worsened, and at times it was hard to move my tongue, almost stroke like symptoms. In the beginning it caused severe nausea and headaches. Just seen my neurologist again and he took me off of this drug. It definitely did not work for me."