Is your neuro an MG expert? Just wondering because of the odd added dose of 30 mg.

You are getting used to both the disease and the drug. It takes awhile. A higher dose isn't always better. Mestinon gives me about two good hours. It kicks in after 30 minutes and wears off at least 2-1/2 hours after I take it. I am on, as a rule, 90 mg. every three hours. That works for me . . . a consistent dose round the clock. There are times when I need to back off and times when I need to increase it (10 mg. at a time). My neuro has only approved 100 mg. as the top amount. Some people can tolerate more than that but a few studies have shown that it can "flood" the neuromuscular junction with too much acetylcholine and it can take awhile for the acetylcholinesterase (enzyme that mops up after acetylcholine) to clear the area!

We have fewer receptor areas for the acetylcholine to go through. So Mestinon makes us able to keep acetylcholine in the area longer so we can use up more of it. But all of that "muscle gas" still needs to be able to get into the muscle to be used and it could take longer to do that because of the reduced "openings." Does that makes sense? If there is a small hole in a balloon and the balloon is filled with water, it will take a LONG time for the water to drain out. Same kind of situation. And then, if it hasn't "drained out" by the time you take more Mestinon, then there's too much acetylcholine and you feel weaker.

Not my best metaphor.

So sometimes it's best to have a smaller, consistent dose than a larger one. It all depends on the person. Sit down and talk to your neuro about it all. And continue to trust your instincts about it.

BTW, Mestinon is relatively contraindicated in asthma. I had bronchial hyperresponsiveness when I started Mestinon. A month later, I had persistent asthma. But, at least for me, taking the inhaled steroids daily actually helps my MG. So it turned out ok. I will NOT give up my Mestinon.

Take a deep breath and relax. Or not. This is a lot to get your head around. I am spending Wed. afternoon with our friend who was just diagnosed with MG. I'm exhausted only thinking about it.

Annie

http://www.mestinon.com/index.jspf