Hi, Welcome to the group. Sorry to hear you have MG, but it is treatable and most of us get it under control and live a good life with treatment.
I got the same prescription when first diagnosed with MG -- take mestinon 3x per day spaced out over about 8 hour periods.
I ended up in the ER and for a hospital stay because I really needed about 6-8 per day to breathe decently and function. A neuro who knew about MG said I could take as much as 120mg per dose at about 3-4 hours, but I mostly took about 60 mg every 3 hours or so.
I found, like you, it took about 30 minutes to start and lasted about 3-4 hours. By taking one every 3 hours I did pretty good. The neuro I had who was experienced with MG told me Mestinon is more of a "as needed" medication, like aspirin for a head ache, and gave me a prescription that read "Take 1 to 2 pills four times a day as needed. Adjust dose as needed to control MG symptoms." That let the pharmacy prescribe 8 pills per day for my supply. I took two only if I really wanted to be functional for some special physical activity, as they do have some bothersome side effects. I also took Imodium (loperimide) with my morning dose and always something to eat -- with them to help with the digestive problems. Mestinon also made me perspire greatly when I was active, so kept extra shirts available.
Mestinon kept me functioning while prednisone got the antibody level reduced, and eventually I found when prednisone had my MG symptoms gone, mestinon didn't help anymore, just made me twitchy. With higher doses of mestinon, I also got bad leg and calf cramps at night, so quit taking it about 6 pm until morning and that helped a little with the cramps. I also did night stretching of my legs do pushups against the wall, standing back some to stretch the calf, foot and leg muscles. Waking up in the middle of the night with a ferocious thigh, calf, or foot cramp is probably something like a birth contraction (my wife scoffs at that comparison).

So, call your doctor, tell him exactly what you posted here, and that you think you need to at least double the dose, and make sure the prescription gets to the pharmacist so if you run out, you can get more. I had a dread of running out at first until I got the as-needed prescription that kept me with a small surplus of them. A person doesn't get addicted, but instead knows what will happen if the pills run out!.
By the way, the first 4 months of my MG were the worst as the doctor and I got a treatment plan and the symptoms under control, then things changed to trying to find the lowest effective doses of the medications. Get a neuro who treats many MG folks and you will do better than one who doesn't.

Good Luck,
Russ

Thank you so much for all this information Russ! I will speak to my neuro about how I feel and see if he can prescribe it as needed so I have more liberty to adjust it as needed. I had actually given up on finding what was wrong with me until I saw this neurologist. I'd asked many, many other doctors about my symptoms, and about my eyelid drooping, but they ALL dismissed it as "sinuses" or part of my migraines, or "you just need to exercise". I went to see this Neurologist because of migraines, and he immediately saw the drooping eyelid and asked me about it...then I told him about all my other symptoms, and for the first time in a long time I felt like someone was actually listening to me! He knew exactly what it was.
I'm fortunate that Mestinon is not really giving me bad stomach side effects. So far I've don't have any of the side effects that I read about (knock on wood lol). I have so many more questions though!

Hello everyone, I am new to this group but not new to Myasthenia Gravis. I have had this disability for 34 years now. My eyelids were completely closed and I taped them open each morning for twelve years. I am retired due to food poisoning and undergoing five plasmapheresis treatments. I have had my Thymus gland removed, which stopped the disability from advancing without taking steroids. I too take Mestinon but found that without steroids to help, the symptoms were not getting better. Imuran is a miracle medicine for me. I was taking Imuran for two weeks and after twelve years my eyelids started to stay open on their own. I have been taking this medicine since 1996.
This disability can be very very ugly!
I've been thru all of the above symptoms each one of you have had before taking Imuran.
Ask your doctors about Imuran and get a doctor from the MDA, that specialize in our disability. Every symptom there is for MG, I have had, my double vision is crossed over. My right eye sees the image in the upper left and my left eye sees the image on the right side. I cannot not move my eyeballs up, left or right and I do not blink...........Get a good doctor you will need one. You may ask why take Imuran and my eyes don't move, well its a Blessing not to tape anymore.
Let me know if I can help.......
Tricia

I posted this back previously. I have copied and pasted it here. I hope this might help people understand that the initial dosage of MESTINON (at least in my case) was not sufficient. I am a 69 year old male and when I was diagnosed in December 2016, I weighed 206 lbs. The only drug that I have ever taken to fight MG is Mestinon. None of the other drugs yet. My chief complaint was double vision and being tired. I weigh 193 lbs today. Weight loss, I believe do to me changing my diet.

I have also updated this post to let you know what has happened to me since July 29, 2017 till today August 17, 2016

Here is my previous post.

My initial dose of Mestinon was 1 pill (60mg) every 8 hours. That's 3 pills per day.
After one month with no change in double vision, Neurologist said take 2 pills every 8 hours. 3 or 4 or 5 days later ... double vision gone.

A few months later ... I mentioned to neurologist that pills were hard on me. He said I could take one pill every 4 hours. So I did that for a couple months. Tried taking 5 pills per day, stretched out over the day.

On Hot/Humid days, I take a total of 6 pills. On cooler days, I drop back to 5 pills per day.

I think that everybody out there should listen to their own bodies.

The 2 pills in the morning (I chose 4:00 am for those). I don't do 2 pills in the morning anymore. Those pills were the hardest to deal with.

So this is what I DO ... right now and I feel better, subject to change anytime I feel like changing it (but I will rarely go over 6 pills in a day... like adding a 7th pill.

I do this now:

Have an IPOD and use it's clock to ring a bell for me ... to take my pills.

4:01 am 1 pill
8:01 am 1 pill
12:01 pm 1 pill
4:01 pm 1 pill
8:02 pm 2 pills

That's my 6 pill day. The 2 pills taken at 8:00 pm carry me through the night.

This currently works for me. Stomach feels much better in morning when I don't start the day off with TWO PILLS.

Listen to your body. Don't overdose. Talk to your doctor. Tell a friend or family member whenever you are changing your dose. I tell my wife everyday what I am doing. Saves her from having to ask me what I am doing. I am happy to say we approach MG together. I have MG but it is like we both really have MG. Not just me.

****** NOW HERE IS THE UPDATE at 8-17-2017*****

I think it was around the 2nd week in June 2017 that I drastically changed the food I eat to a predominately plant based diet. Fats from plants and protein from plants. etc.

I don't recall anything really happening. (But now I think that something must have been happening inside my body because of the change in diet.) My opinion.

On Sat. July 29 (according to my written records) I was sick and tired of taking MESTINON!!!!!
(6 pills per day) (180 pills per month) (SIDE EFFECTS)
Told my wife ... that's it. No more. "if my double vision comes back ... then I will wear an eye patch."
(In my case the double vision is where the disease is right now.... plus I have the tiredness after 2-3 hours of work, and that responds to a rest period.) So ... I don't have the other complications that so many others have posted on this website. I am fortunate. (But, I have prepared myself for the other symptoms that could manifest later on.) Sorry for all of you who have such a bad time with MG.

People ... I just got tired of taking MESTINON. Fully expecting the DOUBLE VISION to come back.

To Date: 8-16-2016 the DOUBLE VISION has not come back. The last time I took Mestinon was on 7-29-2017 Should have taken 6 on that day. Took 4 instead and then quit. Haven't taken any drugs since then. Nothing. Double vision has not returned. Still have the tiredness throughout the day. Been working in 88 degree heat on 4 acres cutting bushes, grass and small trees. High humidity. Swamps. I get fatigued. I rest 90 minutes ... go out. Do more. Pushing myself. Trying to see if double vision will come back. No double vision.

My list shows that to date 8-16-2017 I have NOT TAKEN 110 60mg Mestinon. Everyday that I don't take my 6 pills ... I add it to my count.

Will my double vision come back? Probably
Will I be terribly disappointed if it comes back? POSITIVELY

This is the most important part of my POST here.

This is what I am doing for me. Don't do anything like this ... just because some fool like me is doing it. You may do serious harm to yourself. I am putting this out there ... to let you know about my experience. I have relatively speaking ... a mild case of MG. But still it's a pain for me to deal with.

I bought two books recently. Received the titles from a RN who also has MG. I am just on page 28 right now of the first book. And, I haven't started the second book yet.
Here are the two titles. You might want to check them out.
The Wahls Protocol by Terry Wahls, MD (She has MS)
The Disease Delusion by Dr. Jeffrey S Bland (I have not started reading him.)
Got the books from AMAZON.

Hi, to much or to little, unfortunately, have the same effect. Ive had MG since 1998. Also took a while to be diagnosed..I had to just kinda adjust my dosage over the years and now my Rx just says every 3-4 hrs or as needed..be blessed