Annie, this is a brilliant explanation about Mestinon. Just brilliant! (See quote below - from Annie)
I too, agree that two 60 mg tablets (120 mg total) - taken at the same time is
probably too much.
(Dave, please don't take offense, we are two anonymous MG patients speaking from experience). There may be others who are able to tolerate this dose.
I had a bad experience (within the past couple of years - when dealing with another illness and MG) - with taking (one each) mestinon dose (60 mg) - too close together. This was probably within 2 hours - 2/12 hours of each other. Physical reaction was
extreme weakness and muscle fasciculations in limbs. Thankfully my breathing was not affected greatly.
Not a good experience for me.
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Dave, good luck with your "learning curve" with myasthenia gravis and mestinon.
Keep your doctor well informed regarding your response to the medication. As Annie said, we are all different. Remember that there are not many of us (with MG) and your doctor is doing his best with the MG information available and his experience with MG patients.
p.s. - I think physicians (treating and research) could (possibly) learn so much from reading the postings in this group. That is, if they had the time and curiosity.
Quote:
Originally Posted by AnnieB3
I assume you're talking about a 60 mg. Mestinon tablet. Not only does MG have a big learning curve, Mestinon does too. Sometimes more is not better.
There are two things you can change: The dose amount and the dose frequency. It's always best to check in with your neuro before you make any changes.
120 mg., or 2 tablets, is probably too much. Why? You run the risk of flooding your neuromuscular junction with too much acetylcholine. There are many studies on keeping dosing of Mestinon no greater than 100 mg. Yes, there are exceptions to this but most neurologist do not like to dose above that because you could wind up with a cholinergic crisis (too much acetylcholine). An MG crisis is when you don't have enough acetylcholine and are much weaker.
Sometimes having a consistent dose of Mestinon throughout the day works better. Like 60 - 90 mg. every 3 - 4 hours. But, again, talk to your neuro.
I apologize if this sounds too childlike but I think it's important to really understand what this disease and Mestinon does.
You know how when you drop something on the floor and then have to clean it up?  That's what is going on in the neuromuscular junction. Acetylcholine/ACh (ah-seat-ill-co-lean) is the muscle gas that keeps our muscles strong. Acetylcholinesterase/AChE (ah-seat-ill-co-lean-es-ter-aze) is the enzyme that comes in to clean up the ACh mess. That process happens in everyone's body, whether they have MG or not.
So, because we have MG and not enough acetylcholine gets to our muscles due to the damaged muscle receptors, Mestinon BLOCKS that AChE/enzyme from doing it's job of cleaning ACh/muscle gas up so that we can use it longer.
The problem is that when you block too much of the enzyme, too much muscle gas can build up. That happens if you take too much Mestinon. So you can get weaker on too much and get into trouble. You can also have more side effects, like Quandry was talking about with the sweating.
I attached the Mestinon pdf below for you.
I'm glad you felt better. It's such a hard balance between not enough and too much with Mestinon. And, sometimes, if you do more activities, you might need a little more Mestinon. I can take 10 mg. more if I'm going out, for example. I'm already on a high end dose.
Everyone is different and what works for you might not work for someone else. I hope you can figure out the right balance.
Annie |