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Old 03-26-2010, 08:08 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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I'm glad I can help, Abby. There is a lot to know about MG and all the drugs.

Think of Mestinon as having a very short "half-life," if you still want to think in those terms. It can wear off quickly. I just didn't want you to get stuck on terminology but understand how the drug works and when it wears off. Any MG expert will tell you how fast the drug wears off. It stinks. I wish they had the other drug, Monarsen (which I believe they renamed), on the market. It is supposed to last 24 hours.

Mestinon is a "helper" drug. It doesn't do anything to address the immune process that creates the antibodies that attack your neuromuscular junction (with the exception of a couple studies that say Mestinon does suppress the humoral immune system).

Imagine you have a slight pain in your back and a raging headache. You take acetaminophen for it. It will probably get rid of your back pain but not all of your headache. When you take Mestinon, it's sort of the same. It may help the "lesser" weakness or areas that you haven't used as much but it won't help the weakest areas get "all better." Don't ever think MG gets "all better" with Mestinon. Never does. So that is in answer to your question about Mestinon not helping all muscles equally.

Have you ever noticed that when you walk a lot, those muscles are weaker in the next couple of days? Or when you sit at the computer a lot, your neck and arm muscles, and possibly chest wall muscles, get weaker? The more you use a muscle, the more acetylcholine you use up. The more you use up the weaker it gets.

And you don't want to target the weakest muscles for getting better via Mestinon because that's when you can take too much Mestinon and overdose, leading to a cholinergic crisis. That's why so many people have to take Pred or other drugs to do better. Mestinon is useful but it is not going to get you back to "normal." EVER.

This takes a while to get, Abby. You are very new at this. It's been a long time for me and I'm still in denial about what I can't do. No one wants to stop doing what they want to!!!

If anyone else has any other good tips, please chime in.

Just go easy on yourself and try not to do too much.

Annie
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"Thanks for this!" says:
DesertFlower (03-27-2010)