Drug Ratings for MESTINON

Average Rating: 4.1 (59 Ratings)

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5=HIGH (this medicine cured me or helped me a great deal.)   

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 5  Ocular Myasthenia Gravis (my son) My son has twitching in his arms, legs and stomach every now and then. He gets stomach cramping sometimes and loose bowel movements. My son was diagnosed with Ocular Myasthenia Gravis a little over 2 years ago, right before his 6th birthday. My husband and I noticed that my sons left eyelid was extremely droopy. After blood test and eye examinations he was diagnosed with Ocular MG. He started off taking 10mL of Mestinon 4x's a day, then about 6 months later it was reduced to 8mL 4x's a day. Towards the end of 2013 the neurologist took a dose away and he was taking it 3 times a day. Three months ago the neurologist took away another dose so he was taking it 2 times a day. We had an appointment yesterday and she still wants my son to take it twice a day, but she dropped it from 8mL to 6mL. This medicine is truly amazing. My son's eyelid has not drooped since he's started taking mestinon, and all of his muscles throughout his body are very strong. I am very thankful to God for this medicine and for his neurologist and ophthalmologist. Though he does have the cramping, twitches, and loose bowel movements from time to time, I think this is a great medication. M 8 2 years
60mg 3X D

 2  OMG Absolutely hate this medication. I am begging my neurologist to take me off and put me on prednisone! Horrible muscle twitches that cause cramps in my feet and calf muscles especially. Constant eye twitching and tearing that just drives me crazy. Sometimes get stomach cramps or nausea that I relieved when I eat enough prior to taking, but that has resulted in weight gain. And, the gas is This is the second time I have gone back to this medication. When I was initially dx 9 yrs ago, I tried it, and I had very few side effects, but I also had no symptom relief. I switched to prednisone and cell cept, and I had amazing symptom relief. After 4 yrs, I was able to go off all medications, and I was medication free until 7 mo ago. Now, I am at 60mg, 4x per day, plus 180mg time release at bed. No more OMG symptoms, but the side effects are almost worse. F 32 7 months
60 4X D

 3  MG Existing uninary incontence much worse, no longer able to hold any amount of urine. Otherwise no other side effects. Blut the increased incontinence is so severe I am no sure it is worth contining using mestinon. Will check with neurologist about reducing dosage. Notice a definite increase in strength. Able to do water aerobics for 30 minutes without undue exhaustion, which is a definite improvement. Seems to give mild relief to blurred vision when I am tired and facilitates reading for longer time period. F 70 6 weeks
60mg 3X D

 5  Ocular MG No side effects whatsoever. None. zero. Eye symptoms improved significantly, almost 100% again. If I haven't had any side effects so far does that mean I likely never will or have I just been lucky so far? F 49 7 days
30 3X D

 5  mg Frequent urination heavy sweating, sometimes headaches but on the whole has made life much more enjoyable, dosage just increased as previpius dose was not lasting 4 hrs only 3 then one eye would shut,and I would get tired, without mestion I would be a mess ,but now have never felt stronger side effects I can live with mestion amazing!! Mg is a horrible disease but with mestion you can look and feel somewhat normal!!!! M 46 4 weeks
360mg a da

 4  mg Stomach cramps if not takin with food. Muscle twitch once on a while F 22 6 years
3x d
 5  MG Increased salivation periodically. Abdominal discomfort if taken on empty stomach (2 Ritz crackers with first dose preventive). Very rare diarrhea. Not a cure but much improved. Diplopia now problematic only when I don't get enough sleep. Can walk on level without difficulty. Hills a problem (walking hills brings on diplopia despite sleep). Slow walk no symptoms. M 63 3 years
60 4X D

 4  MG mild sweating, stomach cramps, loose bowels, and twitching in legs... I find the liquid dose is alot more tolerable on the GI then the pills. I take Nexium and that helps with the stomach cramps and diarrhea. Dont drink milk or eat dairy products with an hr of taking this med, if your lactose intolerant. WIll cause more gas and other issues.--> I know from experience and other MG patients. This med has allowed me to keep wkng and be mobile...although I like to push it, my legs will give out after to much walking. Because of more frequent bowel movements, I do not absorb the vitamins and nutrients we need to be healthy, have started a supplement of VIT D and VIT B's...helps with energy. Living in a tranquil lifestyle helps the immune system to stay calm and not over react...which is where our issues are...God Bless and keep positive don't let this control you, YOU control the illness. F 48 8 years
45mg 3X D
 5  ocular myasthenia gravis some gas, esophagal spasms if gulping food down without thinking, shortness of breath, right branch of heart has a bundle block and Mestinon may be assisting this from getting worse... I have had reiki treatments by a lady who could re balance my energy shakras (s?)e and it worked for about 6-8 weeks at a time..but she is no longer available where I live...Felt like I was on top of the world afterwards.I am going to try it again (no side effects!) M 74 10 years
180 mg 2X D

 5  M G iam taking mestinon about 6 years now along with imuran i have just been told i have a skin cancer a side effect of imuran any advice welcome M 70 6 years
60 1X D

 5  MG Sweating is the only consistent side effect. I experience stomach cramps and twitching/tics if med is taken too soon between doses. This is my miracle drug. After over 20 years of undiagnosed belching, esophageal spasms, and choking, I began to lose control of my constantly twitching tongue, which caused slurred speech. A neurologist suggested we try mestinon to rule out mg. Blood work was negative for mg, but mestinon has saved the day. F 45 1 years
60 mg 3X D
 2  for mg I have been taken mestion for 3 years along with azathioprine my left just closing I have no reason why the dotors don't know why so I am trying figure out do I really have mg or what. Know my back is getting weaker by the day I cannot drive or nothing almost fell again in the bedroom. Any sugguest just tried of this. F 58 3 years
60 twice
 3  Myasthenia Gravis Sweating like crazy, stomach cramps,diarrhea (every day) and nausea(sometimes) feeling more hungry!!! Salivation and sometimes difficulty swallowing. I am on a 3 x 60 per day for ony a month. It doesnt help me completely, far from that, but it is deffinately better since Im taking it. There are days when I feel really good and it reminds me of those lovely days without MG. But the feeling of my own body as it was before- is never the same. First I experience pain , weird pain, then weakness and then I just cant do what I was doning anymore. exmpl. Things fall out of my arms or I suddenly just lose balance in my legs. And I cannot sing like before (used to study singing) Double vision and eye muscles- they react the best to mestinon, legs worse. F 25 3 months
60mg 3X D
 3  MG Lots of muscle twitches and frequent urination. Have been taking it to help with OMG. Taking it more to prevent flair up of other symptoms. Prednizone has helped with the double vision - highly suggest anyone with double vision as their doctor about it, it worked for me. M 19 4 months
60 4X D
 4  Mg Diarrhea, blurry vision, sweating, twitching muscles It works well but a double edge sword. If I take it and my timespan, the side effects are awful but if I don't take it can't walk. Since I like to be active, I deal with the side effects F 48 1 years
60mg 3X D

 3  MG frequent urination, occassional incontinence, upset stomach I had a sudden onset of symptoms about six weeks ago - drooping eyelids and shortness of breath - although looking back there were some symptoms that I wrote off to other things. The drooping eyelids was what finally sent me to the doctor/ The Mestinon has pretty much taken care of the droopy eyes, but my other symptoms (neck hurts when holding my head at an angle - get very short of breath - have to head to the bathroom A LOT) seem to be getting a little worse. Have only been to see the neurologist once. I do not have insurance, so this is going to be a hard thing to manage and I know some treatment options will not be available to me. F 56 3 weeks
60 MG 3X D
 5  Myasthenia Gravis Wild twitching in legs, and sometimes arms and face. It's actually amusing to watch my legs and toes, reminding me of the scarab beetles in THE MUMMY undulating beneath the skin, and my toes moving independently in ways I could never do intentionally. As my MG goes into remission, and I have reduced my dosage, the twitching is abating. Currently I am taking 3/4 tablet at 6 am, 10 am, 2 pm, and 6 pm, and then 1/2 time-span tablet at 10 pm. This is a wonderful drug -- a miracle, in fact. After a sudden onset of MG, I had a lateral robotic thymectomy. Prior to the surgery I was experiencing respiratory crises several times per week, had double vision, had become a clinical wimp. and was taking 90 mg of generic Mestinon every 3 hours around the clock. The surgery seems to be having its effect, and I am confident that I am headed for a significant remission. M 62 5 months
45 mg. 4X D
 5  Autonomic Mild twitching if use cooling vest or forget I took it some hours before. Great medication. Unbelievable that one medication alleviates so many symptoms. F 45 1 years
2X D
 3  Myasthenia Gravis I came out of remission after 25 years just before christmas,i have been placed on mestinon since then i have had severe cramps, twitches in muscels,nausea ,loose loose bowels, fatigue F 41 10 weeks
60mg 3X D
 3  Ocular Myasthenia Gravis Nausea and Diarrhea. F 57 3 months
60 3X D
 5  myasthia gravis stomach cramps fatigue water eyes diarrhea gas it has help me a lot because i couldn't walk, talk,see,or breath i was in icu for 1 month. i was treat by 3 hospital. i was on life support.they had to bring me back 3 times i have been through a lot since november 15 2009. i was a single mother with 5 children now i am married. jerome has been by my side since day 1 and i love him with all my heart .i am still having a hard time but i am dealing with it,thank for the mestion F 38 1 years
90mg 6X D

 2  Neurologist guessing I have MG.. Urinary incontinence.. a complete emptying of the bladder unexpectedly. Increased sweating of armpits, watery left eye. Has anyone else experienced incontinence? I really can't take it long enough to figure out if it works or not due to the urinary incontinence. I am a medical mystery to many Neurologists, no sure thing to diagnose MG. I am sero neg, but the EMG was indicative of MG (not 100%). F 44 7 days
60 2X D
 5  Myasthenia Gravis Stomach discomfort. It gives me the worst gas known to man! It is just annoying more than anything. I was diagnosed with sero-negative MG. I primarily have trouble breathing, swallowing, and chewing, but occasionally, my arm or leg muscles will get weak, too. When I first started this medicine, I was astonished at how quickly I noticed a difference! It has truly made a difference in my life. I almost feel normal, and only occasionally have a bout of weakness. F 28 1 months
60mg 4X D
 2  Myasthenia Gravis Diarrhea I don't know what has happened. The first month I was taking it things got better. The muscle fatigue was so much better. Then I got sick a month ago and it's like the Mestinon isn't doing anything to help with the fatigue. I am worse now than I was before taking the Mestinon. F 37 2 months
120mg 3X D

 3  myasthenia gravis when taken without food or when im hungry i experience severe twitching in arms, legs and stomach, eye lid. because ive taken it for such a long time, it's starting to lose its effects, so i take extra (take it as i need it) and if taken before the shower it does affect the heart beat. F 20 14 years
60MG 6X D

 5  MG Excessive salivation and diarrhea when starting drug, muscle spasms in feet and occasionaly experience muscle twitching Started 5 years ago when in ICU with MG crisis, intially 4 x60mg now it's 3x60mg along with immunosuppressive drug daily. Virutally symptom free of MG for 5yrs no longer need steroids, had thymectomy and am now about 90% back to normal functioning. Muscle twitching only lasts about an hour or so after taking Mestinon and is annoying but happens infrequently. F 57 5 years
60mg 3X D

 5   cramps in calves and feet. unexpected bowel movements. these side effects are well worth dealing with since i have the strengh back and am able to go for walks again. mestinon has really helped the muscle weakness that was making my life miserable. I still have trouble with double vision even following surgery to help increase the strengh of the eye muscles. however the doctor wants to redo the right eye. maybe my double vision has hope. F 60 3 months
60 mg 4X D

 5  MG occasional muscle cramps in legs and feet; loose bowels occasionally; have to pee 20-30 minutes after taking meds; muscle twitching if take too much (doses too close together) still nothing better for my MG....have had MG since I was 12 and been on Mestinon since then. Also take Prednisone (30 years); Mestinon still makes all the difference in my vision and day to day life. Have never been so healthy and strong. Also had thymus taken out 6 months after diagnosis F 45 33 years
45mg 4X D

 4  MG Diarrhea, stomach cramps, nausea. Muscle twitches if too much is taken. Even with side effects, this drug is amazing. I was completely unable to function at almost any level before finally being diagnosed and started Mestinon. It has brought me back to about 75% of what I was before MG. F 43 5 years
60 mg 6X D
 4  Myasthenia Gravis Terrible diarrhea until I started taking Loperamide Anti-Diarrheal evey day. Still get severe cramping in hands and fingers. Doc has prescribed potassium for cramping. Also get twitching eyelids when taking Mestinon. Vision has gone from 20/20 to 20/40. had Seem to have to urinate every 5 or 6 seconds. Was also taking 60 mg Prednisone, now down to 20 mg. Still bruise or cut for no good reason. Still weak after 3 months. Tried to play golf yesterday and I hit the ball about as far as my 150 year old grandmother. Still get dizzy without warning. Followed up with bleeding ulcer that my doctor said was caused by Prednisone, then pneumonia, so 3 separate trips to hospital. Hope it's all over now. M 71 90 days
360 mg 1X D
 5  Myasthenia Gravis Double Vision, weak arm & legs, laboured breathing, dizziness, very tired even after a night sleep.Cannot walk far, round a SMALL supermarket exhausting. Having been in remission for about 15 years. MG is now back, I was very lucky and was diagnosed early in 1962 because my optician's cousin, was head of Neurology in Manchester UK. Mestinon was prescibed. I am now back on it & having all the usual cramps, so I am taking a anti-spasam tablet which helps enormously. After reading some of notes, I am SO lucky to live in the UK and have an almost free good National Health Service. F 62 40 years
480mg 8X D
 4  MG Gas, loose bowels, best if taken with food but I handled it ok when I just took it straight. I take a 180 time span at night and feel great in the morning and then I take a 60 mg 2 times a day. Keeps me going. It is a very effective drug for MG. I have had Mg for a little over a year and it made a lot of difference. I had my thymus removed and I am getting along pretty well. I am about 75% of what I was before. The mestinon is making life good again. M 59 1.2 years
180 1X D
 4  Myasthenia Gravis Unpredictable and strong bowel movements. Loose Stool. Some Diahrria. Contracted full blown MG in March 2009. Breathing, swallowing, eyes and tongue paralyzed. Spent 9 weeks in the hospital and 4 weeks in rehab. Currently taking one 180 MG Timespan pill per day. Tried increasing it to two per day to improve swallowing difficulty, but bowel problems were too bad. Had 5 IVIG infusions which helped a lot. Plasma Phoresis really helps, but is risky. M 79 8 months
180 MG 1X D

 4  having myasthenia gravis my side-effects were difficulty in travelling coz of my bowel movement and its bleed. diarrhoea,even more than 10 times a day and it makes me tired. i'm also having stomach cramps/discomfort and the doctors prescribed me with buscopan to reduce the cramps and it helps, a bit. i was diagnosed with MG since april 2009 in Hospital Selayang, Malaysia. actually, the symptoms occured since mid of 2008. i was admitted in ICU(february2009). my symptoms were difficulty in breathing and muscle weakness. when i was secondly warded in april 2009,they diagnosed me as MG as my eyelids drooping, double-vision and weak-jaw,difficulty in speaking. since then,they introduced me with mestinon. i started with 60mg 4 t/day.and now,only 60mg 3t/day. i'm now continue my f/up at GHKL. this drug amazingly increased my strength. thankyou to all selayang and GHKL doctors and staff,they are the best and thankYOU ALLAH. F 39 9 months

 5  have mg cramps in hands, calves and muscles in back of shoulder. loose stool I take 90mg four times a day. Using this medication let me regain my life.I take Mestinon along with a anti rejection drug named cellcept (Mycophenolate generic). My symptions of MG were diffuculty breathing,drooping eyelids, chocking,couldn't support my head upright, extreme muscle weakness,sleeping approx. 22 hrs per day. Doctors didn't expect me to make it. Good doctors and good medication and a great creator. M 65 5 years
 4  Myasthenia Gravis Twitching of both eyes, Neck pain, Diahroea,nausia, stomach cramps. I was diagnosed with Myasthenia in 2006, had a full transfusion of infogram, didn't work, Had a thymectomy to remove the thymus and associated tumor. Had radiation treatment on the cancer discovered during the operation. Symptoms held steady for 12 months after the operation, now getting worse by the day. Must always be in sight of a toilet, which makes it impossible to travel. Currently taking Mestinon, Imuran, Prednisone, but still getting worse. Gets that bad that I'm actually disappointed that I wake up. M 51 3 years

 4  Myasthenia Gravis diarrhea, stomach discomfort. I started with 30 MG three times a day. The first dose made me feel better than I had in months. The dose soon became inadequate. I now take a Timespan at bedtime. I feel great in the morning. I still take 30 mgs four times during the day. They don't seem to be effective. I just want to feel normal again! I'm better with Mestinon than without. My other best friend is Imodium!! F 59 3 weeks
 5  diagnoses with myasthenia march 09 stomach cramps, loose unfinished bowel movements, urge to defacate, although its cured my vision problems, associated to MG, the stomach problems and bowel movements are like a prison sentence to me, Im nervous about travelling, never know how Im going to feel one do to the next. M 54
 2  To Test OMG I have yet to experience any side effects I am seeing double vision for at lest 6 mon with no other side effects other than the headaches caused by double vision and being tired all the time which I think is caused by the headaches. I have seen Dr. after Dr. and the last Dr. (a neurologist) wants to test me for OMG so he prescribes mestinon... It has only been 3 days taking 1/2 a 60mg pill three times a day and I have seen no improvement what so ever...from your experience does anyone think it would have worked by now if I really had OMG? I need a higher dosage? Is is at all possible to have OMG and not respond to mestinon?? F 22 3 days
 4  mg when I don't eat I get real bad stomach cramps. Alot of time I am under medicated because I try to take as need then I don'thave enought in my system when I get exhausted or stressed. 2 a day gives me a normal life F 38 2.5 years
 5  myastinia gravis abdominal cramps and diarreah that stopped about 4 months after starting the drug the drug caused me to be symptom free and live a normal life for 4 years until i missed 2 6omg doses in a row. Symptoms returned with a vengeance, worse than ever. Doc says it will be about a week before symptoms are under control again. F 41 4 days

 5  Myasthenia Gravis abdominal cramps I have been taking Mestinon for almost a year now after being diagnosed with MG. It has helped greatly with increasing my strength. Before starting this medication, I was very weak. I didnt have enough strength to walk, comb my hair (as my arms were weak) or do any normal everyday activities. Mestinon has allowed me to live my life, full strength. F 27 1 years

 5  ocular myasthenia gravis Initially, some tearing but now none. Two or more solid bowel movements a day. That is all Miraculous drug. Double vision was terrible. Now, to date, I am symptom free. M 70 10 months
 4  myasthenia gravis At the beginning cramps, loose bowels, but then it got better if I take it with food. Muscle twitches, including eyes. It is difficult to distinguish between MG symptoms and side effects. But it definitively has helped my blurred, double vision. Also, I seem to have less muscle strain in my neck, since I have less pain in the afternoon. 44 2 months

 4  Myasthenia Gravis Loose bowels and stomache cramps which last only minutes when taken without food.This medicine has allowed me to live a full life, since I have 2 teenagers and I work and go to school full time.If I over do it, I will experience weakness but usually I know my limits. F 38 4 years

 4  Myasthenia Gravis Only at night - face gets warm and flushed and breathing somewhat laboured I am taking the SR with 15mg of Prednisone and it has definitely helped the muscular mobility. I can shower as soon as I get up in the morning now without tiring completely. I just had a thymectomy 4 wks ago by breaking the breastbone as there was a tumor on the gland. F 47 4 months

 5  Ocular Myasthenia Gravis When taking the Timespan Version slurred speech, weak jaw, abdominal cramps - None when taking 60mg Mestinon This medicine helped me through two pregnancies as it allowed me to get off the prednisone which can have really bad side effects after long term use. I can lead a symptom-free life on this. I started on the Timespan version and only got the normal version when there was a shortage of mestinon and no chemist could get it. What a blessing in disguise as the 60mg version works fantastically without any of the horrible side effects that I used to get with the Timespan Version. M 35 4 years

 4  dysautonomia (most likely omg) increased sweating, increase saliva, double vision, dizziness this drug has been amazing at increasing my strength. before I used to dread having to walk from my car to a building and couldn't even carry my own back pack with my school books up the stairs. now I have my strength back to carry my back pack and not dread waking up each day because my muscles are so weak I can hardly move. the only thing that really bothers me about this medication is that it makes me dizzy and get double vision. (i gotta talk to my doc about that next time i see him.) F 22 3 months

 4  pps and unknown muscle problems diarreha , dry eyes some doctors don't like prescribing mestinon because I don't have myasthenia. Find when I'm on mestinon I always have more arm and leg strength and less leg pain. Dosage various but usually 4 to 8 60 mg tablets daily depending on what I,m doing been taking off and on since 1994 M 57

 4  familial autonomic dysfunction some abdominal cramps, increased salivation. has helped increase my muscle strength in arms and legs so far. (I'm usually so weak.) That has been great! F 21 5 days

 5  post polio syndrome diaherra , eyes watering used off and on for post polio syndrome and unknown nerve/muscle disorders depending on which doctor I have. Most test determine muscle problems but unclear on specific reason. Always gives me more arm and leg strength. 120 mg about every 4 hours is usually the dosage I need if doing physical things. Great medication M 57 10 years

 5  OMG Slightly watery eyes and a little extra salivating This drug has helped me greatly. Fortunately, a very small dosage (120mg total a day) has had the desired effect on my OMG and has almost entirely eliminated diplopia. M 35 2 months

 5  Myasthenia Gravis If took too much, made me weaker I had to take this when diagnosed with MG in '98. I took it three times a day for 7 years. I had my thymus removed in '99 and went into remission in '03. This drug saved my life. I was so weak and tired, and my left eye was always droopy. This was the best drug for MG. I no longer have to take it...but was happy it was available when needed. F 32 6 years

 5  Occular MG twitching, bloating, sweating I've been taking this medication since I was 12 (which is about 4 years now) on and off since my OMG goes in and out of remission anywhere from a few months to a year... I'm taking 120mg three times a day, and the only side effects I experience are twitching, and occasionally bloating, sweating, and adominal cramps. Not often, though. F 15 4 years
 4  Myasthenia Gravis gas, stomach cramping, bloating, loose bowels, sweating, increase in saliva, eye twitching My dr. started me out at 120 mg every 4 hours which caused WAY too many awful side effects. I now take 60 mg every 4 hours when I'm in an exacerbated symptom state and the side effects are much more manageable. It's also always better for me to eat with it, and I tend to take the pill in the middle of the meal. When I got hives a few months ago I started taking Allegra daily and the stomach cramping was so severe I had to switch to Claritin. Could have been the combination of Allegra and Mestinon. F 37 13 years

 3  Occular Myasthenius Gravis Diarrhea, muscle cramps, muscle spasms, slurred speech, severe abdominal pain. I seem to be one of the unlucky ones. I've only been taking it for about 9 months, but it's been a rough 9 months. There's days when I'm not so bad, then there's days when the medicine has me messed up bad. I've been to the ER once so far because of the abdominal pain and cramping. I can eat like a horse with it and be fine, or eat the same ammount the next day and be sick. Each day is a new adventure. On the bright side, my OMG is about 85% managed. M 33 9 months
 5   I have been taking Mestinon for 40 + years for Myasthenia Gravis. I have never had any problems unless I took to much. Then there was the usual problems of cramps, weakness, etc. I always try and keep the dosage as low as possible. Mestinon usually has to be combined with other meds. I just wish that someone made a generic version. Long term usage get very expensive but I am glad that it is still around. F 63 40 years

 3  Myasthenia Gravis Chest palpitations, loose bowels. Mestinon works best for me when my symptoms are not that severe (ie blurry not full-blown double vision). Otherwise side-effects are very mangeable. F 21 3 years

 5  myasthenia gravis Stomach ache if taken without food LOVED this medicine! I took it for about 6 years until I went into remission. It made me able to live the life I wanted to. Not exhausted and weak. F 30 6 years

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