Cramping and Joint Pain From Mestinon

[Kevin J Funaro]

I woke up in the middle of the night with leg cramps. Haven’t discussed with the neurologist, but ate a banana and there were no more leg cramps. Also had them a few weeks age when I first started. I Am going to be proactive and eat a banana a day.

[Ari Maayan]

I suffer terribly from cramps in my calves and feet. I have to get up in the night and place my hands against the wall with my feet some distance from the wall so that I can stretch out the cramping muscles.  I eat 2 bananas a day but they don’t help. I take 4  X 60 mg a day of mestinon. My neurologist says that the cramping is because of the mestinon. But for me that is still preferable to taking an immunosuppressant or steroids. I also get monthly IV/IG.

[Craig]

I find that both mestinon and pednisone contribute to leg cramps. I know that if I take more than 3x 60mg mestinon in a day that my toes and calves are going to cramp up when I lay down, and the higher my prednisone dose it the worse the cramps are. I don’t really like the taste of Gatorade but find that a small bottle daily helps, as does looking for foods that are high in potassium (baked potato, baked sweet potato, spinach, bananas, etc) I think those are all unscientific treatments for leg cramps but they have helped me.

[Ari Maayan]

Thanks Craig,

Maybe the 2 bananas isn’t enough potassium because I take 240 mg a day of mestinon. I’ll try the Gatorade. That didn’t occur to me. Or I will take a daily supplement.

[Cyndi DeHoff]

Yes, I can get calf cramps usually in the morning.  I also will get  painful ab cramping that begins under the ribs. It usually happens in the afternoon when my muscles are fatigued.  I have to sit down immediately and the pain will subside.  A heating pad helps too

[Jodi Enders]

I also get this ab/midbody tightening/cramping every day! What treatment plan are you on if you are comfortable answering? I will make a forum on this soon.

[Rick Federmann]

I was on mestinon for a couple of years and frequently experienced excruciating calf and toe cramps.  Rip-the-bone-off-the-flesh type cramps nearly daily.  My calves would seize up so tight they were hard as concrete.

Adding a lot of salt to my food significantly reduced the frequency and severity of the cramps.  I have hypertension, but adding salt fortunately did not increase my blood pressure.  It also helps that I love salt.

I also learned that when cramps happen, chugging a shot of pickle juice would quickly reduce or eliminate the cramps.  This is a technique used by athletes.  I bought small,  single-serving pickle juice bottles on Amazon that are formulated specifically for this purpose.  As soon as cramps began, I downed a bottle of pickle juice and the cramps disappeared within minutes.

I would like to say pickle juice is an acquired taste, but it is not.  When the cramps happened, though, I probably would have been OK with drinking cactus needles in habanero sauce if it got rid of the pain.

I’m now on CellSept, and am delighted to be rid of the many onerous side effects of mestinon.

 

[Deleted User]

I’ve been using MESTINON about 7 years. Cramps in my thighs and calfs started about a month ago.
My usual dosage is one and a half (90m) 3 times daily.
Bananas usually work. Cutting back to 60ng(180mg)3x a day really didn’t work
I walk more than most with MG, about 2-3miles a day. Lessening the walking does work.
My Doctor says walking less is physically healthier than cutting back medicine.
It”s about 3 weeks. I will keep Rethas and everyone else posted.

[Cyndi DeHoff]

I am on mestinon and cyclosporine

I also eat alot of salt and use the pickle juice (i also have POTS) but i cant say i noticed that it helped with the cramping.

I am on stretching everyday too   I feel like it helps me a bit

[KATHY Lopez]

Although it comes and goes I get severe muscle spasms or cramps in my inner thighs, groin area, worse than childbirth I swear. Nightly when I lay down my right foot turns in and cramps up until I can get it into a different position. I do the pickle juice (sometimes the pickle! Ha!) it really helps. I was taking some trace mineral drops but was concerned with the magnesium. My neurologist just says it’s the mestinon. I take 120 mg x4 a day. Starting IVIG this week for the first time.

[Ronald E. Clever]

I have cramping but the worst is in my arms. I take 60mg 5xday. I have been just riding it through but I will talk to my Dr aboutsome if these suggestions. I can’t do the salt because of high blood pressure but the pickle juice might work even though I hate pickles. I thought my Dr told me to stay away from magnesium but I will have to double check.

[Deleted User]

Hi Ronald. I read your reply about the leg cramps. I was on 6 x 50mg a day of Mestinon and suffered badly too. However since September 2020, once I cut out all carbohydrates, sugars (and the small amount of alcohol I might have) I found the cramps vanished and I could cut the Mestinon down and down until I was able to stop taking them for the past four months. I too had high blood pressures treated with two prescription meds a day but the darned pressure would not be any lower than 140/90. Since becoming carbohydrate free, my blood pressures are a constant 112/73 and yes, I do consume plenty of salt and at almost 59 years old, my doctor says my bloods are better than many he sees who are 40 years younger. Try going carb free for 30-60 days…truly carb free and see the effects. Good luck 🙂

[Rick Federmann]

A suggestion, in case anyone finds this helpful: when I experience a severe cramp, I find that physically pushing against the cramp resolves it quickly.

For example, when my toes try to curl under my feet, I jump up and lean forward on my toes to physically push them back up.  It hurts, but the cramp goes away in a minute or two.

This technique also provides some entertainment value, when my wife is surprised to see me suddenly leap out of my chair when we’re watching TV.

 

[Kevin J Funaro]

Also in addition to bananas that Tums seem to help. I saw this  on the internet.  The neurologist also has me taking calcium and Vitamin D in the  initial appointment.

[Hilda Edwards]

All very interesting articles on cramp and Mestinon. It’s comforting to know that others suffer the same side effects. What exactly is pickle juice.  Is it sold in the pharmacy or do you make it up yourself. Also what is Gatorade? Thanks

[Rick Federmann]

Originally, pickle juice was just the salt brine in pickle jars. It became popular as a solution for cramps. Now it is sold as a standalone product that has additional ingredients targeted at resolving exercise-related cramps.

Gatorade is targeted at exercise-related hydration needs.

To put these in perspective, I used to bicycle 15-30 miles, several times a week in the Texas heat. I drank lots of Gatorade-type drinks during and after the rides. I carried a 2.5 oz bottle of pickle juice to quickly drink when I got leg cramps.

Like the bicycling cramps, my MG cramps occurred suddenly. And, like bicycling, a quick shot of pickle juice was the fastest way to stop them. I’ve since transitioned from mestinon tp CellSept, so cramps are no longer a problem.

If you search Amazon for pickle juice you will find there are a lot of pickle juice products.

 

 

[Hilda Edwards]

Thanks for the information Rick. I will look into these remedies. I am in Liverpool 🇬🇧 UK  so not sure if these products are available here.

[Kenneth Berg]

Just for information – I have been on mestinon (6/day) and cellcept (5/day) with prednisone (now 5 mg) since 2017. So when I began getting cramps at night several moths ago in my calves, in my toes and in my legs, in my feet, I never gave drug interaction a thought. (Have y’all always had cramping with mestinon/prednison?)

After much research, looking for simple things to try first, I discovered too little water and fluids during the day to be the issue. I drink plenty of fluids now during the day and my night cramping has stopped.

[Dean Counts]

I’ve also had cramps in leg, foot and thigh. Talked to my neurologist about it a few years ago. He didn’t tie it to Mestinon, which I’ve been on for 8-9 years, but he recommended adding a magnesium supplement and that’s helped immensely. Still have them from time to time but not every night and not as intense.
I’ve also used the mustard remedy (used by sports teams) when they were particularly intense and it worked pretty well. Downing a packet of mustard (or teaspoon or so) isn’t that pleasant but it does help pretty quickly.  I understand it’s the turmeric in it.

[Ilene Schwartz]

I’m 70 years old and have had MG since I was 23.  I had a thymectomy about a year after my diagnosis and within a few years after surgery, I felt a lot better.  I never associated cramps and joint pain with Mestinon/Pyridostigmine (60 mg every 4 hours) until the past few years.  Periodically over the years I got leg cramps and foot cramps, mostly after exercising or wearing tight boots for long hours.  A few years ago I started to have some muscle spasms.  Not particularly painful but very noticeable.  I mentioned the spasms to my neurologist and that’s when he said the spasms are associated with the medication.  He gave me a prescription (can’t remember the name of it) but after reading the side effects, I never took it.  I was able to cut back on the Pyridostigmine (30 mg every 4 hours) and the spasms/cramps went away. More recently I increased the dosage back to 60 mg every 4 hours, because of some droopy eye issues and that’s when I had very severe pain in my inner thigh, an odd place I thought.  I cut back on the meds again and the spasms/pain went away or is very mild.  When I do get cramps, I use Icy Hot/Ben Gay/Biofreeze immediately and it seems to take away the cramps/pain almost immediately.  I do jump up and start walking around immediately as well.   This forum has been very helpful since I didn’t realize others were experiencing the same things.  Also, for those more recently diagnosed, I hope you manage as well as I have for 47 years.  My thymus gland has grown back but no further treatment has been recommended.

[Ari Maayan]

To: Dean Counts,

Everything that I have read warns MG people not to take magnesium supplements. The word online is that they are highly contraindicated for us folks. How are you doing on it?

[Ari Maayan]

Ilene…..your thymus gland has grown back??!!!??!!  I had no idea that could happen. I read that we are born with a thymus but by adulthood it has been reabsorbed into the body. Do I have bad information???

[Ann Marie Hetrick]

I have been getting muscle cramps lately and never gave the mestinon a thought. I take 2 60mg tabs four times a day. I also find that stretching and rubbing aspercreme on the muscle helps. I also have been drinking gatorade too. I am also glad for this forum. Nice to know I am not alone.

 

[Deleted User]

I was prescribed mestinone when I was diagnosed with intestinal problems. During the whole period of treatment, I suffered from terrible leg cramps and bananas did not help me in any way. After the end of treatment, the leg cramps did not go away and I turned to https://cameronmch.com/services/orthopaedics/ who prescribed me a number of rehabilitation procedures as well as vitamins to restore muscle and bone tissue. Fortunately, after the prescribed treatment, I feel fine. I recommend contacting this clinic if you have a need for orthopedic treatment.

[Prosper Abusah]

I have MG for more than 25 years . I have had thymectomy and different types immunosuppressants . I had IVIG once a month .Now I take prednisolone 10mg on alternate days . I also take methotrexate 25mg once a week and folic acid 5mg once a week . I take mestinon 60mg 4 times a day . I was having severe spasms of my hands and fingers . My blood magnesium level was normal but I was taking small doses of magnesium for the spasms . The effect was very little . Last year , I started taking mega dose of magnesium more than 300mg daily . Since then , I have not had any spasms .

[Bobbi]

Hi everyone,

Mon the subject of spasms/cramps that will wake you up jerk you out of bed at 2:00am, 3:00am, etc…. I’ve been having them for years way before I got diagnosed with MG. I’ve tried everything from magnesium, potassium, coconut water, things that’s guaranteed to work for cramps-you name and I’ve tried it and nothing worked. This was long before I started taking Mestinon. I have been on steroids off and on my entire life for lung problems: asthma and pneumonia, skin problems of unknown origins, since I was 11. The use to radiate my feet and hands the were so bad. My MG doctor actually knew what I had as a child too. He says the only thing that can really help is to take medicine in the Xanax family at night. So he started me on that. They’re not gone, but I’m not getting up5-20 times a nigh anymore it’s more like a couple times or more if I over do it. The more I use my muscles the worse the cramps are at night. Before the start cramping my toes will start moving on their on. I can not make them make the movement they to it’s more like an electric shock is making them move, but I only slightly feel it. The within a couple of minutes of doing this my feet turn into claws. My big toes curl up and then the middle ones curl down and the little toe curls up. There’s no way I can make my feet do this myself. It so painful that even if I can barely walk I have to get up and stand and walk as much as I can to get it to stop. Nothing else work if I’ve over did it that day. The Xanax helps, but it’s the over use of the muscle with people that have MG that causes the cramps. Maybe the mastodon and steroids also make it worse, but I wasn’t on either of these when it started with me! And as to joint pain I’ve had severe joint pain since I was in my early 30’s that had continued to get worse. IBP helps but had to stop when my kidneys levels went too high. Going on a low calorie, low carb, but healthy diet has help me lose weight lower my BP and I’ve been off of all diabetic medicine for 4 years. So cutting sugar and eating healthy organic foods is definitely always a plus no matter who you are.
a little about my Journey
I’ve had, but been undiagnosed with MG since I was about 26. They kept thinking I had MS. My doctors knew I had an autoimmune disease, but just couldn’t figure out what it was and when they couldn’t they would just say you have fibromyalgia! Next special or episode or ER visit they would send me down the same roller coaster ride. I’m one of the 30% that even when my eyes started shutting and not opening (do not test positive for the antibodies) so neurologist would say of unknown origin after brain scans and test came back normal. I was even on medication that made my MG get significantly worse because they were treating me for fibromyalgia and that medicine is not supposed to be taken if you have MG. It wasn’t till I started having double vision and went to my eye doctor and she told me that there was nothing wrong with my eyes it was neurological and that she thought I had something called MG that I actually got diagnosed-well after I was referred back to my neurologist and more test, more scans and he told me again that he thought I have fibromyalgia that the test came back normal, but he would do a few more test and see me back in 2 weeks. While waiting for the test results I got on this and other MG sites and some had videos of people had up just look like me when I got home from work-by 7:00 They couldn’t open their eyes so I started taking videos like they did so I could show the doctor that no matter how much I tried I couldn’t open my eyes either after working all day.  I made several videos over several different days between the hours of 6:30pm and  7:30pm. 7:45 was the latest I could keep my eyes open-then the muscles that held my eyes open wouldn’t work anymore. When the neurologist said again that I had fibromyalgia I said no! Look at this! And showed him what he never saw during the day when he saw me. I’ve been suffering taking the wrong medicines for almost 3 decades because even doctors that are supposed to know this disorder don’t really know it! He looked at the videos and said then said “I’m sorry you’re right I’m going to send you to someone who specializes in MG. Fibromyalgia doesn’t do that!”         I Love my new doctor! He’s a good bit older than me and I just turned 63, but he’s amazing! Within 15 minutes of seeing him he told me what I already knew that I had MG. He got me off the wrong medicines and onto the right ones. It’s 1:19am and I’ve been up since yesterday at 6:15 and my eyes are still open. He’s given me my life back! I give him a hug almost every time I see him because he such a caring knowledgeable doctor that I feel saved my life!

[Ari Maayan]

Reply to Bobbie. WowBobbie, you have really been put through the ringer. I had a similar, although less dramatic experience. I had my first myasthenic crisis before I was diagnosed with MG. One sunny day in Las Vegas I suddenly experienced every symptom of a full blown stroke.  I got taken to the VA hospital by a friend (since the morons at the VA don’t take ambulances). I got checked into the ER. Although my symptoms were completely like a severe stroke, they refused to do a cranial CT. This was because I had a small coil loop recorder implanted below my left chest muscles. They said it would damage their machine. I had previously had CT’s at a civilian CT provider with no problems, which the VA knew about. But they refused. So I had to write my request for a transfer to another hospital on a pad because my speech was unintelligible. Even that was difficult because my hands didn’t work. When I got to the next hospital, they rushed me into the CT Room immediately and did a cranial CT. Then they told me that I was not having a stroke but they didn’t know what was going on. I was admitted to ICU but they weren’t doing anything for me because they had no idea what was going on. I saw all five doctors from their neurology department and none of them could understand what was going on with me. after several days, my symptoms began to abate, so they released me with no diagnosis of any kind. Two weeks later, I got a phone call from the neurology department at the VA asking me to come in. I went in and talk to a neurologist, Dr. Vicente, and he told me that he thought that I had MG. But it couldn’t be diagnosed at the VA, so they sent the specimen to Atlanta where finally I was diagnosed with MG. So, fellow sufferers, I’m sure that it is clear to us that we may have MG but there’s no guarantee that any physician that we may see will correctly diagnose it. And we pay the price.