Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone, i know that mestonin is the supposed wonder drug for this disease, and recently i have had my dosage up'd in hopes of getting my symptoms under control. I am now on 60mg 4 x a day and a time release overnight.. Does this sound excessive to you guys who have probably all been at the stage I am.
I have an idea each neuro has a comfort level with milligrams of mestinon per day. I searched around the web and it seemed the upper limit anyone had been on was something like 1200 mg a day. At 480 mg (8 pills) a day I was barely hanging on by a thread and living in bed or a recliner and going downhill. I'm pretty sure my neuro was having palpitations when he realized I needed more and had to go past his comfort zone which seems to be about 600 mg a day.
Wonder drug, no. Temporary miracle patch, yes.
I have no treatment besides the mestinon, and have been through several exacerbations in the last year. And my body seems to process the mestinon very quickly. This past couple of weeks I've been needing even less, though in made a mistake once and thought I was doing fine and stretching out the time between doses, when I went to get out of the car and couldn't get myself off the seat, let alone stand or walk. Had to take a dose and stay in the car until it kicked in. I just had no idea since my breathing felt fine and I only had minimal eye fatigue at that moment.
It's just so individual, it's impossible to say how much is too much. Even our own bodies change. Mine is nuts, lol.
I am currently taking 60mg every 2 to 3 hours plus timespan overnight. Some days it does the trick other days not.
Hope you feel better real soon.
I have trouble breathing when I take too much mestinon. Like, I stop breathing on my own. So, I really have to be careful. I have learned that I can only tolerate max 45mg at a time.
My metabolism is really slow so the time span was not for me.
I have on at least two seperste occasions taken more than I needed and my symptoms got worse. Waite for dosage time and see if you feel better or worse. If the mestinon is wearin off abd you feel better, then you might not need so much. I am glad that you have an appointment tomorrow. My neuro told me once that you could tell you had too much mestinon by the way your pupils were dialated. But, I can't remember if it was smaller or larger than normal.
Good luck!
Before you see the doc, you might want to review the discussions under Mestinon in the Links Group. Most people who have symptoms mimicking MG crisis are those who have tried to treat their worsening MG with Mestinon alone and on their own. Once the muscle receptors are nonfunctional, no amount of acetylcholine (or Mestinon) will help. All Mestinon can do is interfere in the breakdown which is helpful when acetylcholine can stick around to find a functioning receptor in the muscle, but no help at all if it can't. Most of us require some treatment that interferes in the antibody production. b.
I should've been more clear in my post, I was rambling on so. Were all individual in how much we need, many are on other treatments and need minimal mestinon. Your dosing info must be between you and your doctor. Info from the web can be really helpful if you are in doubt, and help you discuss it with your doctor better. How is one to know if a couple pills a day is the average dose, or high, or low?
I'm rather floundering at the moment and only have mestinon. I had to play with it on my own a few times to keep from going to the hospital where they lack knowledge of MG. I've had many scary nights breathing, and deciding whether risking an extra pill was better than going to the ER where they would wear me out and make me worse without not really knowing how to help me. I'm getting better help now and hopefully won't have to fiddle with my mestinon like that again. I never like doing it, but figured I'd be at the ER for too much or too little anyhow.
LOL I'm in babble mode again, sorry.
I just wanted to add that if you keep a daily chart of your mestinon times and how it is affecting you, it will help you and your doctor to get a much clearer picture. On YouTube there is a gal with MG that shows some kind of big chart she uses to fully communicate with her doctor about what's going on with her symptoms.
Most of us who use mestinon have needed differing amts at different times. Like others have pointed out. Some tolerate mestinon exceedingly well, others not so much so again we are all different.
If you are just asking a general question to know if others have used more understanding that we are not interchangeable...then my most used in a daily amt is my current dose of 600 mg/day.
I am having more problems of late and am taking the 180 mg extended release BID and the shorter acting 69mg QID.
It is really important to work with your neurologist and explain symptoms as they worsen and track response to meds.
Hope you are able to find what works for you! Marie