I find myself wondering more and more if the mestinon is still helping and if it has started to cause problems as well.

When I first started the mestinon about a month ago, it was like a miracle. I took the first dose on the way home from the dr's office and I spent 2.5 hours in the garden for the first time in a month. Before that I lasted about 15 minutes before being exhausted, or less. I could tell very distinctly when the dose kicked in and when it was starting to wear off. Because it wore off in way less than 6 hours (first try, once we knew I tolerated it was 60mg every 6 hours), the neuro has been working with me to work on the dosage. At 120mg in once dose, I got bad pharyngeal weakness side effects on the third dose, so we backed off. The last dose that was stable is 90 mg every 6 hours with 30 mg at the 3 hour inbetween as needed. I did that for a week happily. Now I am finding that i hardly ever use the 30mg in between and have even scaled a few f my other doses down to 60 or skipped entirely.

I am scaling back NOT becuase I feel strong without the meds, but because the side effects of pharyngeal weakness, mild fasiculations and irritation of my asthma seem to be getting more easily triggered. My daily routine has NOT altered significantly, so it is not like I am suddenly getting more rest.

The oddest thing is that although I feel stronger with the mestinon, it does NOT help my endurance. Yes, I can do something feeling a bit more pop, but doing things like holding my arms up at shoulder length, the mestinon does not make me last any longer before i get tremors, aching and arms wear out.

Anyone else have changes in their reaction to mestinon over time? Confused. considering going of of it completely, but afraid of what that will do to my ability to work as well...

AnnieB3 has had some of the best descriptions/answers about this.

In a nutshell - it seems everything and anything can effect the way acetylchline and acetylcholinesterase behaves in our bodies (within the day or over days - even with meds). There is no predicting the cause/effect with repeatable reliability.

That's why this MG is such a puzzle. Can't count on what the day will bring (even with meds).

Nan,

Maybe you should try scaling back to 60mg every five or six hours and see how that works for you. Too much Mestinon can cause problems, just like not taking enough. I too feel stronger since starting Mestinon, my endurance has not improved as much as I had hoped, but I do feel a difference overall. My legs still get very tired if I stand to long, yet climbing stairs has improved. My arms don't wear out as quickly, I still have trouble doing some repetative tasks, there are times when I can hardly scramble an egg!

In a nutshell, if I overdue it I wear out period! But overdoing now is nothing like overdoing before. I'm not sure if stopping the Mestinon all together is the answer, it might just take a bit more experimenting to find the right amount.

Let us know how things work out,

Rachel

suev. I will attempt to track down AnnieB3s comments in the history.
I just feel like I need to mentally sort out which of my symptoms are happening without mes and which are being caused by the meds.
At this point, I need any bit of clarity I can get, and if it is what is triggering asthma, i need a break form that as well. nothing else is helping.

Is your neuro an MG expert? Just wondering because of the odd added dose of 30 mg.

You are getting used to both the disease and the drug. It takes awhile. A higher dose isn't always better. Mestinon gives me about two good hours. It kicks in after 30 minutes and wears off at least 2-1/2 hours after I take it. I am on, as a rule, 90 mg. every three hours. That works for me . . . a consistent dose round the clock. There are times when I need to back off and times when I need to increase it (10 mg. at a time). My neuro has only approved 100 mg. as the top amount. Some people can tolerate more than that but a few studies have shown that it can "flood" the neuromuscular junction with too much acetylcholine and it can take awhile for the acetylcholinesterase (enzyme that mops up after acetylcholine) to clear the area!

We have fewer receptor areas for the acetylcholine to go through. So Mestinon makes us able to keep acetylcholine in the area longer so we can use up more of it. But all of that "muscle gas" still needs to be able to get into the muscle to be used and it could take longer to do that because of the reduced "openings." Does that makes sense? If there is a small hole in a balloon and the balloon is filled with water, it will take a LONG time for the water to drain out. Same kind of situation. And then, if it hasn't "drained out" by the time you take more Mestinon, then there's too much acetylcholine and you feel weaker.

Not my best metaphor.

So sometimes it's best to have a smaller, consistent dose than a larger one. It all depends on the person. Sit down and talk to your neuro about it all. And continue to trust your instincts about it.

BTW, Mestinon is relatively contraindicated in asthma. I had bronchial hyperresponsiveness when I started Mestinon. A month later, I had persistent asthma. But, at least for me, taking the inhaled steroids daily actually helps my MG. So it turned out ok. I will NOT give up my Mestinon.

Take a deep breath and relax. Or not. This is a lot to get your head around. I am spending Wed. afternoon with our friend who was just diagnosed with MG. I'm exhausted only thinking about it.

Annie

http://www.mestinon.com/index.jspf