Mestinon and reactions
 

Hi,
My neurologist says for me to take 30 mg of mestinon every 4 hours while awake, if I have symptoms or not., I tried that but I actually developed symptoms especially ocular, i cut it down to 15mg but still I do better without it and only using it when I have symptoms seems to help me better., I know when I go to him again he will insist to use it continuously, but Iknow my body and what happens.
anyone else in this situation with the mestinon?

I have a similar situation, but I think I have resolved it with my neuro (finally!).

I easily get overdose symptoms from Mestinon and this gives me nervousness, tense muscles and double vision. My neuro originally told me the same thing as what you said, to take Mestinon whether I have symptoms or not...I had to keep complaining to get my Neuro to finally let me vary my dosage somewhat within a certain agreed upon range and I am doing much better now.

I do try to keep at a steady dose, but this stupid MG is not consistant for me...I can go a few months at one regular dosage and then suddenly, in one day, my symptoms get worse or better (which is actually more scary for me than when the MG symptoms worsen, I don't like the Mestinon overdose symptoms) and I need to change my Mestinon schedule immediately or the MG (or the overdose symptoms) gets worse. It is scary for me when my MG symptoms change, I don't understand what makes it happen so suddenly but it does seem to be somewhat related to what I eat, my emotions and chemical exposures. I am trying very hard to avoid stress, to eat good foods and avoid chemical exposures.

I do have to take Mestinon or I get so weak I can't function.

Right now I am taking 30 mg of Mestinon in the morning, and then I take 15 mg 2 or 3 times throughout the day for a total of 60 to 75 mg total in a day.

For a while I was taking only 15 mg of Mestinon every day to keep my MG symptoms almost gone but that only lasted a few months.

You know your body best. Keep giving feedback to your neuro. I found that my neuro gave in to letting me vary my dosage when I started calling his office every time I thought I was getting overdose symptoms.

I hope this helps

I'm sorry that I don't have any advice for you. I take 30mg mestinon 3 times a day with no side effects and I don't even officially have MG. I DesertFlower is right in that you need to constantly keep your neuro informed about the effects that the mestinon is having on you. It's the only way that you'll be able to properly gauge the actual dosage that you need.

My symptoms fluctuate in severity all the time. I go through good periods and bad periods. There are times when I can't even pick up a cup of water and other times in which I can pick up a 10 lb weight. It's very strange and confusing. The problem is there are less good periods than bad. And the good periods are short lived, up to a week at most so far. The bad periods drag on for months on end. I'm best in the mornings and then get weaker and weaker as the day progresses.

Yesterday around mid-day (2-3pm) I couldn't pick up a small bowel of rice (maybe 1lb at most). I was also just beginning to have breathing problems so I took a 30mg Mestinon. A half an hour later I could pick up bag filled with rolls of quarters (about 8-10 lbs) with relative ease. My strength was not a 100% but how can anyone say that this is not a significant strength improvement? When I take the mestinon, within 20-30 minutes I can feel my strength improving.

Whirlwind, Maybe you can explain things to your doctor in this way. Anything the body needs, like vitamin B12 or acetylcholine, is all about supply and demand. If you don't have enough acetylcholine, at rest or while doing something, your muscles will be weak and need Mestinon (or rest). If you have a fair amount of it (ACh) and don't do anything, you should be fine. If you have a fair amount and do something, you can use up what you have pretty quickly. Mestinon dosing can absolutely be activity dependent.

However, for some people like me, a constant dose helps to keep my MG stable. It can often tank quickly and I would rather stay ahead of that nasty curve so that I don't get much worse. That's why my neuro has me taking 90 mg. every three hours, round the clock. I can take a bit more when out. I can reduce my dose if I feel I need to. Having a conversation about this variability and having a neuro who trusts you really helps.

There are two issues here: Dose amount and dose frequency. Giving your body what it needs on a regular schedule makes sense to me. Maybe what you need is 15 mg., then 30 mg. later in the day or when you do activities or more after you do activities.

No one patient fits some neat little Mestinon algorithm! We are all different in how our MG is at the moment, what side effects we have, if we are overall stable, on immunosuppressants too, etc. Your doctor is acting as if MG works in a vacuum and isn't variable. Silly doctor. ;)

Use your instincts. Then talk it over with your neuro and make him understand it. Take care,

Annie

Wow, Annie!

I like that example you gave about supply and demand. It explains why I sometimes need Mestinon and sometimes don't but take it as prescribed and get blurry vision.

I choose to take Mestinon at night, because I need it to support my breathing, and when I feel my legs and arm a bit weak, which pretty much equals to 60mg a day.