I have just started taking Mestinon. I take a 60 mg pill 3 times a day, so that is about 6 hours apart. But the medication wears off after about 3.5 hours. So how often and how much does everyone take? Does anyone take it every 4 hrs?

thanks, kathie

For me, it varies. Most of the time I take 60mg every four hours and it does wear out after about three hours, but some days it seems that I get too much Mestinon and have to skip a dose or the 60mg is not enough so I take another 30mg. In the afternoon when it wears off too fast I drink a cup of hot caffeinated tea to get the extra boost.

Does your doctor let you determine the dose yourself? I can tell when it is wearing off. What symptoms do you have that you know to skip a dose?


thanks
kathie

My doctor allowed me to choose how to take the Mestinon as long as I don't go over 1500mg. I think it was last week that I was having problems with my back muscles and my ribs felt like they were being crushed. I tried increasing my dose by half a pill and felt worse so the next morning I missed a dose and waited for the next dose. I started feeling relief in my back and ribs. So, for the next couple of days I skipped the morning dose, but after a couple of days I started feeling weak again but it was because I wasn't getting enough so one afternoon I increased my dose by 30 mg and felt better. I'm still learning to understand how to react to the changes in my body and sometimes it's not so easy. My antibodies are modulating and I think that's why I'm having so many issues.

Kathie, It's very reasonable to call your neurologist's office and ask what your dosing parameters are - or how they could change.

My body does the best when it gets a consistent dose of Mestinon. I take 90 mg. every 3 hours round the clock. Sometimes, I might take less but not by much! I am allowed to take 100 mg. if I'm out running an errand, since I usually get worse then.

Sometimes it's the dose amount that gets increased and sometimes it's the frequency of the dose. You sure don't want to end up with a cholinergic crisis by taking too much though!

Mestinon usually kicks in anywhere from 15 - 30 minutes and wears off about 2 hours later. It's annoying to have to take a drug so often but I'd be completely useless without it.

Quandry, I honestly don't think it's the modulating antibodies that are causing your issues. It's simply MG that is. Though they haven't fully investigated the differences between the antibodies, in my opinion.

http://www.clinchem.org/content/56/6/1028.full

And to add to the confusion, you can have a lot of antibodies and less severe MG and vice versa. It's always best to go by how weak you are or how much weaker you're getting. You might want to put a call into your neuro too!

http://www.ncbi.nlm.nih.gov/pubmed/3479935

Though they do have some clear explanations for each antibody.

http://www.aruplab.com/guides/ug/tests/0099521.jsp

I don't know why I only have modulating antibodies either.


Annie

I take 180 mg(3 of 60mg tabs) every 3 hours for the 3 morning doses and 120 mg(2 of 60 mg tabs) every 3 hours for the 3 afternoon/early evening doses and 1 timespan to get through night. I do not ever change the dosing schedule without doctor approval and it has been this dose for about 2 years now. The timing is very rigid and I never deviate more than 15 minutes on a dose.

I started at 60 mg every 4 hours in august 2011 and with dr consent have now increased to 60 mg every 1 to 1.5 hours (total 12 or 13 per day) plus one timespan at night.

For me my vision starts to get very bad after about 1 hour of reading, working and this schedule seeems to help.

Re crisis from too much my dr said not concerm at these levels.

That should have said aug 2012 not aug 2011

Steph, taking it that often, well does it, how to say.........
make you crap your drawers?

That is the problem for me. If I take more, it does more good, but......

Best thing I did for that was to go on a lactose free diet. I also take an acidophalus pill in the morning and yogurt with the evening pills.

I began with one 60 mg pill; reached three and no noticeable improvement. Improvement began with first long span 180 mg, pill. At max, I took 3 60mg and 4 180mg long span. i've cut back to one 60 mg and still 4 long time span.

Therefore I take pills 5 x a day. I eat every 3 1/2 hours. Meal and snack times are pretty set, except for dinner which is when I take the 60 mg pill. That works out well, since at one point I took both the 180 + the 60 at one time. So I don't have to worry about getting over dosed. Makes dinner with friends much more doable. Lunch is still 11:30; few lunch dates.