Carly,You have a great neuro and my best to you! Hubby Jerry with MG will be 3 years in January on just pyrodostigmine ! My prayers are with you!

For some of us pyridostigmine is a miracle drug...I hope for that for you...Hold onto the neuro! Marie

That is interesting. Before I got out of the hospital I pointed at the pyridostimine and told the neuor that it was incredibly important. I might have used words like saved my life blah blah blah...

I am trying to take as little as possible and I heard that the effectiveness of the drug wanes after a couple months. That made me nervous.

I haven't had any bad side-effects, but I have had to up my dosage. BUTTT, my condition was getting worse after a tetanus shot so maybe that was to be expected too.

I agree, you all are great and thanks for being there.

BTW, I take some small dosages at night because I use a CPAP.

I have a question.

My Neuro said don't take it before the four-hour mark (or was it three?).

How often do you take it. I wake up and take 60 mg. After about three hours I take another 45 (I might start taking 60). After that I take about 30 mg every three hours.

She upped my dosage to 60mg four times per day.

Do you take it every three or four hours?

Your body will let you know and it's different for each individual. There are times the disease flares and you will need closer spacing and when it backs off you will not need to medicate as often. I personally need it every 3 hours - when I first started this I was looking at a clock about 2 1/2 hours after a dose as I got weak but now things have smoothed out. Always listen to your body. I do not follow an as needed schedule but a rigid timed one and that works best for me. Good luck.

Thanks maricak, that was exactly the type of answer I was looking for. I think every three hours is good for me. Why let the antibodies get a foothold.

I read that half of the pyrodostgmine is left after four hours. It take about an hour for a dose to hit the system and it peaks after about two hours (so I read at least).

Check out the discussion Mestinon in the Links Group. It has links to studies showing absorption, etc. The main points are that it is very variable, takes longest to get in the blood stream taken on a full stomach and lasts longest taken that way, empty stomach shorter, chewing fastest.

We usually do best given a top dose and working around that. Schedules can get kind of whacky looking: mine: 7:00 chew 60 mg, 8:00 60 mg after breakfast 10:30 60 mg chew or with snack 2:00 60 mg 6:00 60 mg 10:00 60 mg. By afternoon the prednisone is kicking in and I am not as active. I may take a dose in the night. I may make some modifications depending on activity or how I feel in general.

One thing to remember is that if your MG is acting up and your receptors are non functional, the Mestinon will not work. If you are requiring more Mestinon, that is an indication that MG is more active and may mean that it is time to add something else. b.

Thanks b.

Since I got a tetanus shot last month, it has been getting worse. I keep adding more and should probably add something.

Barb,
I'm encouraged to hear that some can do only Mestinon-at least for some time. I don't use it on days I'm not going to be doing as much. I still have to pace myself when it's on board b/c if I overdo, I still pay.
I take the Mesty about every 4-5 hours. Any sooner and I am a mess!

Interestingly, my first dose works best and the mid-day and evening dose don't do as much. Still, any improvement is welcome. :)

The only side effects have been positive. I already had tummy issues and those have stayed the same.

Thanks for sharing!
Carly