I have been on Mestinon 60 mg for about a year and a half and it seems to be losing its effect. Has anyone else experienced this?

Hi,

Yes, this happened to me a few times when I was taking it everyday pretty much around the clock. My neuro did another evaluation and increased the dosage. When my MG started getting better and I had fewer symptoms, I was able to go back down to the lower dosage again. I currently take 60mg every 3-4 hours or as needed or I am able to tolorate it due to the side effects, per my neuro. Have you called your neuro? He may increase it or want to do another evaluation. Please let us know how you make out.

Hugs,
Pat

Before I was put on CycloSporine, this happened to me. Now, the amount I need has gone down.
I was first put on Prednisone while I was in the hospital, and then several months later they put me on Mestinon.
Love Lizzie

I saw my neurologist and explained to him how I feel that I'm losing the effect of the mestinon and he increased my fourth dose to 90mg which is before I go to bed. Any one else gone this route?

Yes, the body can begin to need more and more. If you've ever known anyone with pain issues, it's the same with pain meds.

Well, that kind of scares me. Why not try the increased dose during the day first, so you see if you have increased weakness?!!! If you try it at night, and have signs of a cholinergic crisis (increased weakness) while sleeping, it could be very dangerous. If it works okay during the day, then taking it at night should be fine. Ask your neuro about that!

And there's also the thought that when that 90 mg. wears out in the middle of the night, you will be much weaker. Your body may "wake you up" and need more.

I know that not a lot of doctors like to give Mestinon Timespan at night but what if you talked to your neuro about trying that at bedtime?

I hope you can get it all worked out.

Annie

Patrick here,
what are you using to reduce your antibodies attaching to you muscle receptors pred or what ?
If nothing then like me where the pred is not working yet the mestinon usage becomes directly related to how you use it up ,high activity quicker to run out and you become weaker.
As I have got out this week and had more activity I first of all thought overdose weaker but I had m=no muscle flutters or eye flutters when I was weaker therefore for me no overdose .
I increased it by mistake when rushed by the gp to his office for early appointment took it before leaving the house .forgot I had taken it when I got to his surgery I took a second 60mg at two ,first at one .then I had to rush to catch neuro at three .my neck was down on my chest since saturday because the gp gave me an antidepressant that interfered .
when the neuro saw me now with 120mg in me no neck droop what a fool I felt excellent all round physical strenght during testing .
an hour later my head was on my chest
agreed to changing to 60mg every three hours .
would not put up with my head on my chest straining every other part of my upper body.went back to accident anf=d emergency new neuro says if that what it takes to keep head up change until we cansee if the pred stops the antibodies occupying the muscle receptors.
if not we may have to try adifferent sreoid to stop the anti immune system releasing so many antibodies that they occupy the receptors for too long for the mestinon to stay arounnd and your muscles weaken.
Thats me

Many people can not tolerate Prednisolone or the immune suppressant drugs so they can only take mestinon.

For me Im stuck with mestinon only because I can't get anyone to diagnose me, despite the fact my symptoms are pretty classical MG.

Ive been stuck in this position for a couple of years after the initial diagnosis of MG was withdrawn. At this point Id try anything to get well. My illness affects me to such an extent I have only been out of my house three times since the end of August.

Love
Rach

hi rach patrick here how big a population does your neuro guy serve as this may be why you are not getting enough of an expert if his polution is small when statistics show 1 in100000 people with mg and much bigger umbers the more severe the mg .I have diaphraprm problems.
It was not picked up because I bek=lieve with a popualtion in northern ireland of 1.5 million I don't think the neuro guy has ever seen someone ith chest muscles affected bymg ,no enough experience.

My consultant sees all the patients in the East Devon area and North Devon and some in Plymouth. He actually sees quite a few its just hes not very good at thinking out of the box (all my tests are negative although Im positive for the ice pack test). Hence why I am going back to Oxford, as at the moment I am basically being told there is nothing wrong with me and its all in my head.

Where I live there is actually a bit of a hot spot for MG as we have over 50% of the population aged 65 and older. I know this as a friend of mine is a pharmacist and he obviously dishes out a lot of meds to people!

Thanks Patrick.
Love
Rach

Thanks Rach
Who's referring you to oxford?
I printed off the numbers for the uk mtasthenia gravis site and seems there are about 10,000 patients in the uk but the split of the classifications has not been done in any detail.
An average four Gp practice will have Obe Mg Patient . guess I am it for my practice.