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Old 12-29-2011, 10:33 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Aaron, Hi and welcome!

The dosing of Mestinon can be tricky and hard to get used to. What you are proposing, however, could get your friend into trouble. Too much overlapping of doses can actually cause her to have too much acetylcholine, making her weaker.

Has she had a conversation with her neurologist about this? There are two things a person can "tweak" with Mestinon: The dose amount and the dose timing. Sometimes people are allowed to take Mestinon every 2-1/2 hours. But, again, she needs to talk to her doctor about that first. The dose for her might not be high enough. For example, I'm on 90 mg. (Mestinon Syrup) every 3 hours, round the clock. There are times I might need a little less or a little more. I can go up to 100 mg. Some studies have shown that anything over 100 may flood the neuromuscular junction with too much acetylcholine. Some MG patients are on more than that.

This is a tricky issue. She doesn't want to go up too high on Mestinon or too quickly and end up in the ER with a cholinergic crisis (too much acetylcholine). Maybe talk about increasing the dose amount slightly, like from 30 to 60, and on the weekend when she can see how she'll do. No, I'm not suggesting she do that without her neuro's permission!

Mestinon is simply not enough for some people, especially if they want to keep working. It has finite possibilities for keeping you strong. While your idea sounds good on paper, in practice it may not provide the help she needs. I get only two "good" hours from Mestinon. It kicks in after about 30 minutes and wears off after 2-1/2 hours of taking it.

Only your friend and her doctor can decide what to do. I would not recommend that she try your idea. It's not that it's a bad idea but playing around with meds can be dangerous. It can also loose it's effectiveness if you change the form it comes in. For example, Mestinon cannot be put in the fridge. There's a lot to think about here and she needs to talk to her neurologist.

It's very nice that you are trying to help her. MG is an unpredictable disease and even with changes in a treatment regimen, it can still get worse. It completely sucks! Maybe she could log on and talk about it too. I hope she gets it all figured out.

Annie
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