Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am posting this for anyone new or not on Mestinon, but also as a record for myself. My Rx for Mestinon is a 60 mg dose divided (30 mg x2 per day). My neuro is looking at this as a trial I think to test whether the drug works at all and if so what the dose should be.
So, here is what happened when I took the first dose, at about 1 pm (with lunch--advised to 'take with food'):
About 20 minutes after taking, I felt something akin to a "flushing" sensation mostly in my head/neck area (no rash).
2 pm One hour later, feeling a noticeable reduction in achiness/fatigue in my shoulders/neck which had been constant. Increased strength in my legs (can rise from a chair without using my arms). Reduced fatigue in my lower arms and fingers which I notice as I am typing these notes.
3 pm. Two hours later, fatigue in neck/shoulders 50% reduced, closest I have felt to 'normal' since the onset of symptoms. Still able to rise easily from a chair without using arms to assist. Ate a mini-KIND bar; still substantial mouth fatigue while chewing.
4 pm Improvement has plateaued but has maintained a 50% reduction in fatigue symptoms. Enough that I can go about preparing dinner! Panzanella salad and potato/leek soup using homemade chicken stock.
5 pm not much change but starting to feel "heaviness" around my neck/shoulders.
5:30 Fatigue/weakness is rapidly returning to my neck/shoulders after I finished dinner prep.
6:30 Pretty much back to where I was before I took the Mestinon.
So... good news, I have made a new friend in Mestinon! And no adverse effects noted so far. I am going to take the remaining piece of the 60 mg tablet before bed and the next 30 mg before I go for a walk tomorrow.
Cheers,
Doug
So - for digestive problems every morning I took 2 loperimide over the counter tablets (Imodium). I also always ate something -- few cracker or something with each dose. My prescription started with 3 per day, one every 8 hours. That was so little I ended up in the hospital because i couldn't breath. With one every 3 hours I could. I also tried time release pills for night, but didn't like them.
When i needed to do something physical for a few hours, I took 60 mg every 2 hours and carried along extra shirts to change because of the summer sweating.
The worst was night time leg cramps -- calves and foot mostly. I found if I stopped taking it about 5 pm and just chilled out in the evening, they were less. I also did some leg stretches each night before bed by doing pushups against the wall with my feet back from the wall a little to stretch the calf muscles.
Eventually I got on prednisone and that lessened my need for Mestinon, which was a relief.
However, I saw Mestinon as a sort of miracle drug as it brought me to functionality for a few months that otherwise would have been rough. I took one about 3o minutes before eating too so I could chew and swallow better.
Since Mestinon works, you definitely have MG, as that is about all it helps. I don't remember that taking it in large doses was damaging to any of our organs. I also found that after a few weeks, I got pretty much adjusted to it so the side effects were OK.
I was so dependent on it, I was very worried I would run out before i could get a refill. So my neuro gave me this prescription -- Up to 8 60mg tablets per day as needed. Normally I took 6 or less and so had extras. Before that if I took an extra pill I got paranoid I might run out.
My neuro explained what an overdose would be like so I might be aware if I took too many.
The time release ones i had were 180mg that were supposed to last maybe 8 hours. I tried them at night but I didn;t like them as they seemed to be somewhat uneven in their release or effect.
I had a CPAP breathing machine for sleep apnea, and so found that I didn't need the pills at night as the machine made my breathing OK without them. During the day I didn't like the time release as I wanted to be in control of the dosge -- maybe 90 one time for a boost and another time 30 when not doing anything etc. I had a handy pill cutter to spit the 60s.
If you just take mestinon, MG can progress and you may not realize it other than needing more and more mestion until you finally crash hard. Some get by on just mestinon, but most need immune suppression too. Mestinon is symptom helper, not a treatment for the underlying problem.
Well, that is about all I can think of! We have sort of love /hate relationship with our meds as we need them and they help greatly but at the same time, when you are shocked awake at 2 am with a calf cramp and try to reach down to rub it and then the other calf cramps and you lay there in pain that certainly is about as sharp as a man can get, you wonder!
But I never really thought of not taking it until prednisone worked.
Good luck
Russ
here is may experience(s) with mestinon,
Note: I was Dx over 17 years ago...
I started having unrecognizable symptoms around age 35.
basically all of a sudden for example could not run fast but
the day before I was running like I was still 18 well at least 25.
and the day after I was fast again. I couldn't do 1 push up all of a sudden (im a bass player and did fingertip pushups every day since I was 17. but again the next day I was strong again. sensitive to light, sound couldn't chew a piece of gum... again the next day I could do it. Couldn't pour a gallon of water but next day - presto back to normal.These symptoms were all spread apart by months
in the beginning. by age 37 these symptoms were now occurring like 2 weeks apart - example couldn't chew gum
one day next ok for remainder until it happened again which might be a couple more months. BUT a week or two after not being able to chew gum I couldn't do a pushup - next day again was all A OK. it wasn't until around age 40
that I couldn't whistle one day - i looked in the mirror thought i had a stroke as half my face was droopy.
i was just starting to slur and have swallowing problems.
Went to Doctor - who just happened to practice in a Hospital and was told its Bells Palsy. (WRONG) ill get into
My DX story at another time... Anyways on a scale of 1- 10
10 being the worst i was at least an 11 i thought i had meningitis as i could no longer talk or walk or breath easily all took place within 24hrs. they started me at 100mg pred.
360mg pyridostigmine and 180 mestinon. Note some of us call the 180s "sleepers" as we take them at beddy bye time.
my group calls the 60s pyrids or pyridos and mestinon refers to the 180 sleepers. dosent really matter but be aware that some old timers refer to them as such.
aside from the prednisone blast making sunlight for the first time overwhelming along with night time halo looking lighting. It was quick acting too bad it plumped me up after 6ix months. a lot of cramps in legs at night - don't miss them. the pyrids really kicked but in the beginning i would say for the initial 2 years after DX i took the sleepers and the 60s religiously by now my symptoms were still a
solid 7 to 8 still drooling slurring couldn't swallow hold my head up etc. Not trying to scare you but you need to know if you feel this way it sux but is normal just keep doc in the loop. finally after about 4 years after DX my cell cept replaced my roids and by 5 yrs i was roid free at least daily.
by this time i stopped my pyrids and sleepers because
the best way to explain it was they made me feel poopy.
i had to go to the bathroom a lot. (especially when taking high pred dose you get HUNGRY. to wrap this up i have a stash of pyrids and sleepers that i seldom take because of
the bathroom issue. in the summer they seemed to make me feal like oily and sweaty cant explain it but i think mosquitoes did not like it either. im pretty much solely
reliant on my cell cept and was lowereing those doses by skipping a day here and there 1 or 2X a week but now that this corona 19 im restrategizing alonf with my doc.
after 8 or 9 years my doc said "you know how your body responds now" you can decide which dosage to stay on as long as i Stay on & keep my docs in the loop along with blood tests and visits. IM fortunate i live in Philadelphia area
and go to Univ Penn And Columbia Univ and have a terrific
relation with all my docs. I felt it prudent to see multiple Docs to compare notes and second even third opinions.
were all here for you and we all have a story and advice but consult your doc and try to keep open mind so YOU can decide whats best for YOU. in the beginning that is a lot harder but it will get easier. I could go on forever with shortcuts and things i wish someone showed me. We are ALL happy to help learn and Listen
davy
Rhanson is absolutely right. Larger dosage means greater side effects. Here’s another hint. Mestinon is a drug that goes through your system quickly so at about 4 hours it’s out of your system and you need more. I have at times taken my four hour dose (60 for me) and split half to take every two hours. This has helped through some really rough days. I’ve also noticed that some of my original side effects have lessened while some have increased over the years.
Here’s an article: https://pubmed.ncbi.nlm.nih.gov/2991094/
Might call doc’s office Monday to let them know how it has worked. Good luck!
From the abstract:
"Blood levels (of Mestinon) were lower if corticosteroids were administered simultaneously; azathioprine had no influence on blood levels."
I sent the log off to my neuro as well so she is in the loop. On the one hand, it feels great to find something that will work! On the other hand, I do have to figure out how to best use this drug to help me live the life I want to live.
I have not experienced any GI side effects but my dose is also "low." On Monday I am going to call my neuro to see if she is ok with me increasing to 30 x3 and then keep increasing until I can be symptom-free, and take it from there.
I do like the fact that it "clears" quickly so it won't interfere with the testing I will be doing at some point (but who knows when with the hospitals tied up with coronavirus cases).
I really appreciate the sharing of experiences with this drug--it really helps (and helps my wife also, who reads these replies too).
Cheers, and stay well everyone!
Doug
I too agree with all of the above, but there might be value in adding to it. You obviously do have MG and I suspect now that's established the next step is to find out where it's going to next? Whether or not Mestinon is the long-term solution to keep things under control is probably doubtful, MG can progress quite rapidly if left unchecked and Mestinon doesn't tackle the underlying problem (antibodies) but that's for your Neurologist to establish.
I find this document to be really good at explaining MG
https://pdfs.semanticscholar.org/32cd/5670ee93a784bfa7b297434c1d66bbd482c6.pdf?_ga=2.15988530.501914779.1584874589-1569019679.1584874589
This is the first time I have been on any support group chat and I hope I have not been too boring,
Good to hear from you and encouraging that the daily intake of Mestinon is working well for you.
I assume that having read this thread you will have been encouraged to seek reassurance from your Neurologist that Mestinon is all you need?
Take care
Peter
Welcome to the group!
Most of us start with Mestinon and it does work good, but for many of us, our MG progresses and soon Mestinon doesn't do enough. But it is enough for some folks. So if you find yourself needing more or it not working as well, you may be like me, having MG getting worse and need immune suppression too. Be sure you contact your neuro if you find Mestinon now working as well or needing more, as it can be dangerous as our immune system destroys our neuro-muscular junction communication.
Good luck
Russ
Welcome to the group!
Most of us start with Mestinon and it does work good, but for many of us, our MG progresses and soon Mestinon doesn't do enough. But it is enough for some folks. So if you find yourself needing more or it not working as well, you may be like me, having MG getting worse and need immune suppression too. Be sure you contact your neuro if you find Mestinon now working as well or needing more, as it can be dangerous as our immune system destroys our neuro-muscular junction communication with it being masked by Mestinon
Good luck
Russ
Well put, Mestinon is a two=edged sword in the world of MG!
Peter
When I wake up in the morning it's just like I've had no sleep at all I also suffer with dizziness on a daily bases it feels like I'm drunk and had none .
I do how ever get very tired on the afternoon and just want to go to sleep .
I should have my hospital appointment in May but I know it's will be cancelled at some point with th I CODIV19 .