I have searched and read several posts on this topic, but would like to ask about how those who do take Mestinon use it each day.

I can see there are 2 types of instructions that have been given by their doctors. It seems that one group takes it as directed at a fixed dosage and time everyday, the other group seems to have some more flexibility on dosage and how often to take it.

Recently after my first IVIG I had a pretty good response to the IVIG and felt I could reduce my dosage. My doctor does give me an amount she would like me to take each day and allows me to adjust the dosage upwards as needed a fair amount to a maximum of 8 tablets a day (normally 4)

What are your thoughts on taking less than let's say the recommended 4 tablets a day if you are doing well?

Is it bad to stop and restart the med?

Thanks.

Joe

It's fine to use "as needed" if you understand two things: 1. You may find yourself "crashing" more if you try and skip doses and 2. You need to make sure you aren't "settling" for the improved function IVIG gives if you instead of maximizing that boost with a small dose of mestinon.

You mentioned in a post yesterday that you are having more breathing, chewing and swallowing issues. That would indicate to me that you are not doing well enough to go completely without mestinon, but you may be able to reduce your dose. Only you can determine that one, however.

Good luck!

4-Eyes, your right at this time I would not change the dose, the heat this week did make it a bit tougher. My question was more in general in about the Mestinon dosage. I have noticed after the IVIG times when I felt I needed less.

Joe

In that case, it would be fine.

I occasionally use 1-2 pills more or less in a day depending how I am feeling. BUT i could never take less than 3 pills a day. I especially need those 3 doses scheduled around my 3 main meals to avoid swallowing issues. My doctor has me on 4 - 60 mg and 180 slow release at night. He does not promote flexibility although I think I need some.

I have eliminated the 180 at night and seen improvement in my Crohn symptoms, but some more breathing issues. I think I need 60 every 2.5 hours to eliminate the rollercoaster ride. I am going to ask the neuro on Wednesday. I am going to try just a 60 mg at night also.

I was out in the heat for 1 hr today and was short of breath for 3 hours.
Thank God the thunderstorms have started and the heat will begin to break. I am going to try some gardening tomorrow. I am tired of looking at the weeds in my flower beds.

Mestinon has a short life in your system. There really is not a build up in your body so I do not think starting and stopping is a big issue as long as you pay careful attention to what your body is telling you and keep pills handy if issues arrive.

good luck
kathie