Hello Bert

For me, it was only a problem in the early days when we tend to take rather a lot. At one stage I was on 240mg every four hours! That caused all sorts of unsociable effects and prepared me for what's to come when I get really old! There are a few medications offered to counteract that impact, names escape me, but as usual, they too have their side-effects. Not sure what stage you are at? Early days or... there certainly are alternatives to Mestinon and no doubt someone on here will be able to relate their experiences.

Take care

Peter

Mestinon was so helpful to me in my first 5 months of MG, I wouldn't have been able to function without it. At first I had terrible digestive problems, but found that if I always ate it with a little food and started my day with two loperimide (Imdium) tablets that made it OK. I took about eight 60mg tablets a day and found that taking 1/2 pill every 2 hours when I wanted to be active worked best. I could handle the 60s but not the 90 or 120 dose suggested by my neuro. As I got used to it, seems like the digestive problems eased a lot.

Another problem I had with Mestinon was during the summer if I was trying to be active, my shirt would become drenched with sweat. I got in the habit of taking along a couple of changes of shirts to cope with that.
Maybe the worst problem was the leg, foot and calf cramps from it. To get around that, I quit taking the pill at about 4 pm and figured I could just chill out over night. I also did a lot of pre-bed calf, leg and foot stretching, and on the extra trips to the bathroom that mestinon created. I still think that waking up in the middle of the night with one calf suddenly cramping and then the other kicking in as I tried to get the first one eased off was surely the most painful thing imaginable and sort of scared me into going to bed. So quitting prednisone in late afternoon helped a great deal, and I could cope with it because of my CPAP

. At the same time as I was diagnosed with MG, I also was diagnosed with sleep apnea, I had one of those CPAP machines that made breathing easy (it pushed air in when I wanted to breath in and relaxed to let me breath out). Whenever my breathing got difficult and I got panicky, I just stuck on the CPAP for 20 minutes and got rested up again -- and that let me get by without mestinon overnight.

Eventually prednisone at 60/mg per day got rid of my MG symptoms and mestinon didn't help anymore -- just made me twitchy. My neuro said we would taper prednisone down to the level where I needed a little mestinon to keep functioning (doing this over half a year). Her idea of the right amount of immune suppression was so just a little mestinon as needed gave me the boost needed sometimes.

My goal was different -- enough prednisone to not need mestinon. On the way to figuring that out, I went into full remission and so got off both meds. 15% of us get remissions of varying lengths.

A month after I was diagnosed with MG, my wife was diagnosed with stage 4 (spread) breast cancer and I figured I would need to make MG secondary in the plan to get her through the coming year -- and so although mestinon and prednisone jerked me around plenty, I knew both were necessary to do what I needed to do. And the two meds made me functional to take Margo through her year of very harsh and debilitating treatment . We are both fine now, 5 years later. and I consider Mestinon as the important initial med that made this work.

Good Luck
Russ

Thank you Peter and Russ! Evens pediatric dose caused diahreaa so bad I needed fluids so I rely on prednisone for my Mg. I sleep a lot! Get tired easy, does anyone else have this challenge?

Hi Bert

Tiredness is a fairly common symptom. off to bed at 7pm sort of thing, and without Mestinon, or something else, I suspect worse, albeit without the leg cramps you get when taking it!

Just spotted this, not sure it helps any:
https://www.raredr.com/news/treating-myasthenia-gravis

When I was taking 60 mg of prednisone a day, I was sort of hyper active -- little sleep time and very ambitious to get things done. I liked to write things and sometimes bothered this forum with my efforts.
Here is a 2013 limerick: I attribute it to being high on prednisone, as I never again rose to such heights of creativity as I tapered off ;-)

Myasthenia Gravis by Russ Hanson

There was a young man named Travis
who got myasthenia gravis.
His regular doctor
thought him off his rocker
but it was really just his thymus. (hard to rhyme gravis).

At 40 mg prednisone per day or less I felt reasonably normal and I don't remember feeling sleepy, but fatigued. I think my starting a CPAP for sleeping at the same time I got my MG diagnosis got rid of my otherwise sleep problems. It probably is a good idea for folks who feel sleepy all of the time to get a sleep apnea test. My first test was a wear at home blood oximeter that clipped on my finger and showed several overnight periods of lowered oxygen. That led to the overnight sleep test and the diagnosis and much better sleep and wakefulness.

'Another prednisone high effort is a this link: https://riverroadrambler.blogspot.com/2013/01/to-keep-my-myasthenia-gravis-under.html I cloned a Simon and Garfunkel song -- Kodachrome to be Prednisone. My excuse is prednisone made me do it! I tried to maintain a sense of humor and detachment as I went through the MG stages -- detachment is useful, trying to see yourself as maybe your doctor or spouse might see you.

Margo and I are from NW Wisconsin and worked in MN much of our lives. We are retired and have spent the intense cold period up there with the -30F in our RV in TX and Louisiana where it is mild, green and pleasant. We won't be headed north again until it warms a little up there.

Good Luck
Russ

Russ

No need to apologise for the 'Kodachrome to be Prednisone linkage' - it's rather good!

peter

Hi. My neuro at univ of michigan prescribed 1mg of glycopyrrolate to start along with the mestinon to prevent GI symtoms. It help a lot and I was able to wean off of it a couple of months after starting the mestinon.
Good luck!
Cyndi