So, as you may have read in another thread, my sister NOW has a tentative diagnosis of MG -- positive striational antibodies and a mediastinum mass on her CT which they think is most likely a thymoma. Neuro put her on a trial of Mestinon -- 30 mg three times a day.

I am conservative and WELL remember the stomach cramps from the early days. I told my sister we were gonna start off easy. With all of the other stuff she has going on, she certainly doesn't need to deal with a cholinergic crisis, right? I mean, WHAT IF this isn't MG? What if it walks like a duck, swims like a duck, quacks like a duck, but is, in fact, a COW?!?!

So, baby sis takes 1/4 a tab (15 mg) at around 5:30 PM. At about 6:15 she calls ALL EXCITED!! She can WHISTLE again!! She proceeds to almost deafen me by whistling into the phone for several minutes. Well, ok!! Then she says she "feels" her feet. What? And, her feet and legs don't feel heavy. Well, ok!! She is giddy. WOW!!!!! I cannot remember how quickly MY first dose worked. I think mine did work within the first couple of days.......I SHOULD have paid better attention!! I think I was still in shock at being diagnosed.

Anyway, she calls me back at 9 PM, all deflated. No more whistling, legs are heavy again, blah blah blah. "Oh, sweetie, THIS is how Mestinon works!" So, this is real. My sister has MG. *sigh* I do NOT want her to have this. We have desperately WANTED answers -- now we seem to have them.

BTW, she didn't get stomach cramps, but she DID pass gas.......once.

We now wait to see if Mestinon improves her most troubling and persistent symptom, swallowing.

Jana,

The MG Manual has a section on Cholinesterase Inhibitors (Mestinon):

No fixed dosage schedule suits all patients. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently—with any dose, some muscles get stronger, others do not change and still others become weaker.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 17

One need to figure out the best schedule for Mestinon.

You can download the PDF MG Manual and keep it for reference. It is also helpful to provide a copy for your sister's neurologist, if he or she does not have it already.

-Mark-

Mestinon only treats symptoms. One should take the minimum amount necessary to achieve a relative symptom free experience. It may take a bit of trial and error to get the best Mestinon schedule.

Here is a link from an earlier threads about Mestinon:

http://neurotalk.psychcentral.com/showthread.php?t=201455

Mestinon takes effect around one hour after taking a dose and usually continues to lessen symptom for two or three more hours.

I was taking one 180 mg Mestinon Timespan at bed time and three 60 mg Mestinon tablets during the waking hours. The Timespan is very expensive, $240 for 30 tablets. I found this was a waist at bed time because rest lesson symptoms. With the knowledge of my neurologist, I stopped taking the Timespan. Right now I only need one Mestinon tables every now and then, usually late into the day. This, of course, can and probably will change in the future.

Before experimenting with dose and times, be sure to have your sister discuss the issue with her neurologist.

BTW how much experience does your neurologist have with MG patients? You might need to educate your doctors on the finer points of MG. It is so rare that many neurologist lack significant experience treating MG patients.

-Mark-

P.S.: your sister is lucky to have your help.

Thanks, Mark! Great info!!

I actually have this book -- well, TWO copies -- AND the CD. I sorta, kinda like to be prepared. I got the extra book to GIVE to a surgical/medical team, if needed. I guess that now I will be passing it along to my sister and ordering another!

I've been on Mestinon since 2005 -- wow, my MG is getting OLD!! I totally AGREE that you have to be so very, VERY careful about its use. I learned SO much from the long-timers here (Annie and others) about what to watch for.

One of the things I learned...............a Mestinon tablet put under the tongue and allowed to "melt" works MUCH faster than in an hour!

I'm so glad you do research and that you POST IT!! Each time you do, you are educating LOTS of MGers -- some who are "lurking" and not yet comfortable enough to ask questions.

So, PLEASE continue!!!

BTW, my sister sees my "group". My MG guy is the MDA director, an MG specialist, and is the head professor of neurology at the medical school a couple of hours from my home. I also have a great guy in a smaller city (less than an hour away) who originally diagnosed me. With all of the HORROR stories I have read about here, we KNOW how blessed we are to have competent and compassionate docs. Thanks for asking!!

I'm going to give that a try.

-Mark-