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Old 08-03-2012, 04:38 PM #21
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Oh, and I take 90 mg 4 times a day and a 120mg timed-release Mestinon at bedtime.

YMMV.....
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Old 08-03-2012, 05:26 PM #22
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Quote:
Originally Posted by teresakoch View Post
The first thing that a doctor wants to do when seeing if Mestinon will "work" for a patient is to determine what DOSAGE they can tolerate.

My neuro gave me an Rx with the instructions to try 30 mg once a day for 3 days. If I could tolerate that, then move on to 60 mg once a day for 3 days, then 90 mg for 3 days, then 120 mg for 3 days.

If at any point during this trial a dosage made me feel bad, I was to go back to the dosage that didn't make me sick. Mestinon's effects wear off within 4-6 hours, so it's usually not a "crisis" situation if you have one "trial" dose that is too much.

For me, 90 mg was the "sweet spot" - 120 mg put me on the couch, sick as a dog.

Once the dosage has been established, then the INTERVAL can be determined - that is, how often you need to take it. And with Mestinon, while too high of a dosage is a bad thing, most of us find that some days we need to take it more OFTEN then our usual interval.

Each patient is different.

And my doctor knew for sure that I "had" it when I figured out what dosage worked and started to figure out the right interval on my own (because I was functional for the first time in a long time).

Apparently I was not the first of her MG patients to do that.....

If you can tolerate 60 mg without seeing a discernible difference, you DO have MG - you might need a higher dosage, but talk with your doctor to see where to go from here.

People who do not have MG can't tolerate even the tiniest amount of Mestinon.
Without a doubt, it has helped, not claiming it made me feel 100% but it is nice to be functional, even if only for a few hours. I have to say this is one of the most bizarre illnesses and that is coming from someone who once was paralyzed from neck down for 4 months from a rare illness (Guillain barre)

Again, thanks for sharing your insight and advice
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Old 08-03-2012, 05:27 PM #23
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Originally Posted by teresakoch View Post
Oh, and I take 90 mg 4 times a day and a 120mg timed-release Mestinon at bedtime.

YMMV.....
what does YMMV mean?
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Old 08-04-2012, 09:25 AM #24
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what does YMMV mean?

Your mileage may vary.....
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