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...

The problem with changing the dose, is you run out of pills before your prescription allows you to get more. So my neuro said that X pills per day is the maximum dose I should take, and 120mg every few hours is the maximum I should take when I needed to be active. Then she figured out how many pills that would be if I took the maximum and gave me that prescription. I never used that many, so had a cushion and wouldn't run out before renewal time.
Doctors want to know what you are doing, so you need to ask, and tell this.
This is a typical statement on mestinon dosage: Adults
Doses of 30 to 120mg are given at intervals throughout the day when maximum strength is needed (for example, on rising and before mealtimes). The usual duration of action of a dose is 3 to 4 hours in the daytime but a longer effect (6 hours) is often obtained with a dose taken on retiring for bed.
Whether your doctor goes along with the "as needed" is both based on the doctor's understanding of MG and as well as the doctor's worry you might overdose. Most of us figure out when we need more and when we can do with less and that makes our lives easier.
Good Luck
Russ
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.