Mestinon for Myasthenia Gravis User Reviews

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

"I had lost the use of my arms and hands, couldn't swallow nor chew, and 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

"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

"I am a 33-year-old female who was diagnosed with level 4 Myasthenia Gravis about 4 1/2 years ago. I've taken Mestinon every day 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."

• Fra...
• December 11, 2020

"I have ocular myasthenia gravis, and after being initially put on 50 mg of prednisone and 25 mg 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 for no prednisone. Certainly urinating more and have diarrhea. Hoping I'll acclimatize to the mestinon as having my all-important vision back is fantastic. Cheers all."

• mar...
• November 16, 2008

"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."

• JJ7...
• January 25, 2016

"I am a 44-year-old male recently diagnosed with MG since November 2015. I take 90mg 4 times a day. My medication generally lasts 5 hours. My MG involves slurred speech, difficulty swallowing, teary eyes, difficulty pushing food around with my tongue, and a very weak bite. My medication usually kicks in after 45 minutes to 1 hour. 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. I have vomited once but I function much better while on Mestinon."

• Anonymous
• September 16, 2021

"I was recently diagnosed with myasthenia gravis. I get double vision, droopy eyelids, muscle weakness, and muscle fatigue. I started on Mestinon 60 mg 3 x a day and 25 mg prednisolone and tapered down 5 mg every week. It worked, and I felt so much energy, but then my medication changed to Mestinon Timespan 180 mg, and it caused me very painful stomach cramps and excess flatulence and diarrhea. 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 hasn't returned. I make sure to eat with the medicine and drink lots of water."

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

"Thymus tumor caused myasthenia gravis. Tumor was removed (thymectomy), but still have severe muscle problems, treated with pyridostigmine 60 mg x 5 and 5 mg prednisone x 2. 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."

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

"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 5 mg prednisone every third to fourth day, heavy exercise regimen (35-45 miles running per week), diet low in wheat but high in veggies and protein. Asymptomatic periods have stretched up to 9 months."

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

"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 Imuran pills, but I am doing almost 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 it's 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. I had to take family medical leave from work."

• Hil...
• Taken for 2 to 5 years
• February 27, 2023

"I have been taking Mestinon for 2 years for generalized myasthenia gravis. I take 30 mg 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."

• Anonymous
• June 22, 2010

"This medicine gave me great relief within a 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."

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

"Mestinon helped ease my symptoms but did not completely relieve 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."

• Cha...
• July 24, 2022

"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 waiting for symptoms to occur. I will do that even though I don’t want to do it that way."

• MRO...
• Taken for less than 1 month
• March 29, 2023

"I started Mestinon 30 mg a few weeks ago and increased it to 60 mg three times a day. The first several days, it worked well, but it seems to only help sporadically now. If I don't get 7 hours of sleep or overdo things, it doesn't help me the next day. I am looking forward to getting put on an immunosuppressive med. The side effects are some abdominal cramping, and it seems to make me hungry."

• Lin...
• Taken for 2 to 5 years
• September 3, 2023

"I was diagnosed in Nov/Dec of 2019. I had weakness in legs/arms/chewing and double vision. I take 60 mg at approximately 8-hour intervals every day. I have diarrhea, which is made worse by having had bypass surgery for weight loss/control. I take 4 Imodium-type pills a day as well as some fiber and an iron tablet. This has helped me to walk and do activities again, although I normally will use a cane for short distances and a rollator or walker for longer distances. It has helped me lead a more normal life again."

• Dav...
• Taken for 1 to 2 years
• January 7, 2024

"Upon MG diagnosis, the Mestinon dosage was increased from 5mg x 4 daily by an additional 5mg every 2 weeks. A trial with adjusting the dosage interval timing resulted in a dosage every 3 1/2 hours x 4 daily of 180 mg (rapid release) and one 60mg dose during the night, for a total daily dosage of 780mg. This was all completed prior to going on Prednisone as a secondary medication."

• gum...
• July 16, 2014

"I have been able to swallow within 2 hours of taking my first pill."

• Joh...
• Taken for 6 months to 1 year
• July 22, 2017

"Medicine works well. I do experience muscle cramps, stomach aches, and muscle twitching at times. Blurred vision occasionally. Overall, satisfied with results."

• Joh...
• Taken for 2 to 5 years
• September 13, 2020

"Mestinon seems to be effective for me in treating symptoms."

• Anonymous
• March 21, 2009

"I tried taking Mestinon when I was first diagnosed, and it caused bad diarrhea."

• Edv...
• Taken for less than 1 month
• December 22, 2019

"It never lasted more than 2 or 3 days."