Thought I would open up this question not only to build up our database, but also to answer one of my own questions. Mestinon is the only medication I take. I've noticed that over the past several years I've gone from taking 1/2 tab to 3/4 tab and now to a whole 60 mg tab every 4 hours. I'm not sure if the MG has actually gotten a little worse, or if my body has gotten adjusted to the Mestinon so that I need to keep increasing the dosage to get the same effect. I know its not that I used to be underdosed, because each time I increased the dosage, I had to be very careful of timing and to take with food or otherwise I would get horrible symproms of overdose. As it is, my GP (I'm not under the care of a neuro) thinks I need to increase my dosage to a tab every 3 hours, but I've been resisting, since I get overdose symptoms if I do, and worry that if I keep up the every 3 hour dosage, I'll just get used to it, and then have to raise my dosage again.
SO------ What's your experience been with mestinon? How many years have you taken it, have you had to increase your dose? Do you feel that it doesn't work as effectively as it used to?
Hugs,

when i started mestinon i started with 1/2 tab 30mg and then after 4 weeks i started 1 tab every 4 hours and now i take 60 mg every 3 hours for a total of 5 tabs a day but if i dont eat i get the overdose effect now he wants to increase it another 60 mg not sure if i really want that i hate it when i get the twitching and i also take cyclosporine and prednisone wish i can stop everything maybe one day

Lois, regarding:

"I'm not sure if the MG has actually gotten a little worse, or if my body has gotten adjusted to the Mestinon so that I need to keep increasing the dosage to get the same effect."

Number one, I really understand what you are saying here. I am the same way. However, I don't think I can increase my Mestinon anymore. I take 1 1/2 Mestinon tablets every 3 hours (90 mgs). If I take anymore or closer in time I get those ill effects. About my 4th year into having MG my Neurologist suggested I try taking 1 1/2 tablet every 3 hours instead of 1 every 3 hours. At first I noticed an improvement with occasional ill effects and now I think I am used to it. Originally, I started out taking 1 pill every 6 hrs or so and gradually increased the amount and decreased the time between dosages. I don't have ill effects very often anymore, but if I do, I take 1 to 2 Imodium (usually 2 does the trick) and then I am somewhat constipated for a day Oh well Also, I need to have food in my stomach and will eat crackers, or if too weak I will drink milk or Ensure (usually drink one Ensure a day) with my Mestinon.

I only take Mestinon. I usually take 1 1/2 pills every 3 to 4 hours depending on how I feel. I do know that REST is like medicine for me. Sometimes, if I feel extra out of breath and/or real weak and fatigued, and it is time to take another dosage, I lay down FIRST of all. Then, sometimes I take my Mestinon or wait 30 to 60 minutes (when I usually start to begin feeling better). It is sometimes too hard to swallow my pill, also. That is why I wait the 30-60 minutes.

Also, I like to exercise about 30 minutes at least every other day and that seems to help me feel better.

Hope this helps.

Hi, I wasn't sure if it was because my body was getting ammuned to the mestinon, or if it's because when I use it, I tend to do more, and in turn it make my muscles weaker, and maybe I need more. I'm just not sure. But I can't have too much, and it hates my GI tract. And I mean hate.
I'll have to ask my doctor which one is probably happening.
Love Lizzie

Thanks, guys, for the replies. It seems this is a problem that affects several of us. I'm concerned about it because I found the following info about Mestinon: Notify your doctor if this medication appears to be losing its effect. In some cases, people become insensitive to the medication and it must be stopped for a brief period. Talk to your doctor about this.
I don't remember where I found that, and forgot to copy the web site, but I found similar info in a handbook at www.mgauk.org.uk which says: Since Mestinon’s effects last only a few hours, it is more important to take it often than to worry about the exact dose, which varies a lot between patients and from time to time in the same one. Generally it helps to keep the dose between a half and one and a half of the 60 mg Mestinon tablets (i.e. 30-90 mg) every three or four waking hours. Always keep on the low side to avoid both side effects on the one hand and tolerance on the other (when it becomes less effective with time).
The thought of having to go off my Mestinon for a brief period of time in order to restore its effectiveness kinda scares me. But better that than to develop increasing tolerance to it and have to keep taking ever increasing dosages.
Lizzie, I'd appreciate your posting your doctor's reply, if you are able to ask him (her?) about this. As I've mentioned in several other posts, I'm just under the care of my GP, not a neuro.
Hugs,

I feel so stupid!! I completely forgot to ask him about this, and I very much wanted too. I knew there was something I forgot. I kept asking my husband, did I remember everything. Now, it's going to drive me crazy until I see'em again.
I'm sorry..
Love lizzie

I thought that I would throw my 2 cents in. I have problems taking this stuff, I have a love hate relationships with it lol

This is one of the reason that I don't take it all the time. When I'm really bad then I will take it, but I find that I can get buy without it, even though I drag my butt around I also found that my dose went from 1/2 tab every four hrs. to a whole tablet every 3 hrs. in about 6 weeks.

I read somewhere that some people might not be making enough acytacholine, therefore they have the muscle weakness. This might be why some of use don't test positive on blood test. This is what I think my problem is, since the blood test that I had, only showed that I didn't quite have enough in the system, hence borderline, I don't even know if I have antibodies directed at the receptor sites.

Anyways I elected to change my diet and see if it helped, and it did, some people are helped with digestive enzymes so that they can make more acetacholine. (sp) I would make sense to me that your body will eventually get use to having it around and then the need for more, and then I think that maybe the body won't make enough anymore by itself and then now your dependent on it...............there are I think a few different types of MG, although I can't remember where I read that info

I really hate the feeling that your worse off then when you started. I seem more achy, more fatigued, stomach ache the big D, you feel good on it then when it wears off its back to zero, so I just as soon not take it if I can get by without it. Also I don't know if anyone else gets this when they take it, I get really grumpy and depressed. Although that could just be because I can't do anything when I'm down. Patricia

Patricia, I can understand how you feel. For years I wouldn't take Mestinon, since I would overdose on it so easily. Instead I coped by limiting activities, resting, and taking extra vitamins. But finally the MG worsened to the point that I had to take it, and I can't imagine being without it now. It is my very necesary crutch.
Lizzie, don't worry, just put it down to the MG mental fog we get. Talking about forgetfulness, I can't even remember what we usually call it!!
hugs,

My son has MG and he is doing the same thing taking Mestinon every three hours, but he is doing IVIG and Steroids also. He gets really sick after IVIG and the steroids are really strong. Have you tried this too?

What r the overdose symptoms? I've been taking Mestinon for a while now (I'm up to 60 mg. 5 X a day + 180 @ night, plus 30 mg. of Prednisone, plus 1000mg of cellcept and was just wondering! When I started, I only took 180 mg a day of Mestinon, but that was BEFORE my thymectomy (3 months ago)...Sorry if I sound goofy, but I really don't know the overdose symptoms Thanks! ERin