Definitely
I was off mestinon for years. Recently I had a flair so I am back on but it definitely fluctuates as needed for me. Activity level is a huge factor.

Thank you for your input. Were you in remission during that time?

You wouldn't be in remission due to mestinon. Are you taking anything else? If not, you could hurt yourself by not getting treatment. I tried mestinon only and got worse over time. When my legs got heavier and weaker, it was a sign.

This is not a disease to play around with. What does your Neurologist say? I no longer take Mestinon, but I do still take Cellcept in what I would call a type of remission, I hope to one day be totally drug free.

Totally agree with the above comment "This is not a disease to play around with" There are some in 'remission' (drug-free), but most of us settle for being in a controlled-remission whereby we take our drugs but have few symptoms. At that point, we see things as being finely balanced and if that balance is challenged for any reason, things change for us, usually for the worse.

Back to Mestinon. remember Mestin does not have any bearing on our MG as such although it does impact on the working of the muscle junctions which in turn might make us feel better for a short time, or worse of course - too much Mestinon can soon give rise to MG symptoms! MG is variable and for that reason, my Neurologist is content to allow me to vary how much I take (self-medicate). Currently, I take around 4x 15mg a day but might well increase one of those to half a tablet if I'm to talk a lot, say at a lunch meeting.

I also take on a regular basis, for that last ten or so years, Azathioprine to suppress my autoimmune system.

Bottom line is to always talk things through with your neurologist before you change anything, that fine balance is easily disturbed and can knock you back to those early days very quickly.

Hi,
welcome to the group. i have to start by disagree with the last statment "Mestinon does have any bearing on our mg"

let just start at the begining, when we all started with mg,, what is the drug starting for the recovery, 1) mestidone 2 ) prednisone

these are the 2 drugs for control of mg,, i agree that no full remission at this time, only what is called remission with drug.

you must remember mg, is a laberinth of wacky detours, my go mild on you or send you in a dangerous crisis.

when i started in 2011 with mg. was declared generalized bulbar in the worst classification of mg,
went thru 2 vety bad crisis the last wich allmost put me to pasture.

these where caused due to being unable to control my emotions , stress ect.. due to loosing our daughter, my wufe in her second cancer operation.

but thamks to the following you can take full control of you life and make it the best it is possble

1) full control of stress and emotions no matter what

2) control of dayly activities, slow down as necessary, and even rtake a nap if possible

3) full cahne of life style including foods, drinks ect

at this time i am in menimum doses 30mgs. of mestidone dayli and 5mgs, of prednisone every other day

i tale 2 dayly walks of 45minutes each, swim, enjoy life as much it is possible being 80yrs young i cannot complaint

life is a bitch but anybody can learn how to dance it and enjoy it even do some disagree with me and my explanations

best of luck Andre

There is no set script for MG treatment. Let it be known that I never once have had to take steroids for my Generalized MG. To state we take mestinon and we take prednisone is just not true anymore. This was the way of thinking 40 years ago perhaps.

Work with you neuro to see what is best and what you are comfortable with.

Believe your treatment plan will work once you start. Mestinon is not a treatment plan.
Good luck!

TJ from CA

yes
When I didn't take or need mestinon I was till on cellcept and low dose of prednisone.

It’s possible to not take drugs and be in remission.
Remember this is snowflake disease everyone is different. I’m exactly the same way as you describe I go for long periods no symptoms and no drugs and then have time where I have symptoms which then resolve without immunosuppressive meds. . I’ve been Like this since I’ve been diagnosed. Nothing has changed and I haven’t gotten any worse either. My achr antibody levels are sky high too never decrease.
Just climbed the Grand Tetons in Wyoming with my teenage son without any issues up at 10,000 ft plus altitude straight up climb carrying an equipment pack. I’m 54 years old. Just keep on going with your life. I see a speech therapist twice a week for some of mg issues but no drugs right now. also have Hashimoto thyroid disease which have to take a drug for.
Im a big believer in healthy eating and exercise but have no idea if it helps because I’ve always been that way.
Not everyone is like this but definitely you can be the way you are. You will know if you are getting weaker.