Hi there, I wonder if you guys can tell me if this is correct.

1) the amount of mestinon a MG patient takes, says a lot about the severity of the disease (f.e. someone who takes 8 x 90 mg a day has "more severe" MG in comparison with someone who takes 4 x 60 mg a day)

2) the maximum safe dosage a person can take is around 1250 mg a day.
This means that taking 200 mg at once (not timespan) is not likely to cause a cholinergic crisis.

Greetings

I would say “yes“ to your question n° 1 but “no“ to your question n° 2.
I think the max normal daily dose for Mestinon is about half the amount you quote, around 600-700 mg...
Maurice.

I myself thought both were wrong. But I have no scientific evidence, just my thoughts.

1: if someone takes only a small amount of mestinon (in comparison) it can also mean they have a very small amount receptors left, and will have cholinergic symptoms very soon, and mestinon will only help a tiny bit. In this case, giving less or more will both cause weakness. So in a sence, they have a more severe MG because they have less receptors left in comparison to someone who benefits from higher dosages.

2: it leaves the body very soon, so you can't compare the maximum daily dose (if this is 1250 or 600 mg, doesn't matter). Because this is the maximum dose you can take in a whole day, not at once.
But what is the dose someone would expect a cholinergic crisis to occur, I wonder.

The MG Manual has a great section on Mestinon:

No fixed dosage schedule suits all patients. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently—with any dose, some muscles get stronger, others do not change and still others become weaker.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 17

The Mestinon only treats symptoms. One should take the minimum amount necessary to achieve a relative symptom free experience. It may take a bit of trial and error to get the best Mestinon schedule.

-Mark-

If I take 120 mg, I have a pretty bad result. I guess I should spare you the gory details, but it is bad.

Hi, Ravenclaw. Good to see you.

It helps to understand exactly what Mestinon does. And what MG does. You might already know this, but I'll put it out there anyway.

Acetylcholine (ACh) is the muscle gas that keeps everyone's muscles strong.

Acetylcholinesterase (AChE) is the enzyme that cleans up ACh when it's done with its job of making your muscles strong.

They both work together to make sure the body has a normal balance of ACh.

You're right that we have fewer muscle receptors for ACh to go into. Some does get in, even with severe damage to the receptors.

Mestinon blocks the AChE enzyme, so that we can use ACh for a "longer" period of time. If you consider two hours long! Mestinon is called a cholinesterase inhibitor.

Mestinon kicks in after about 1/2 hour and then wears off about 2-1/2 hours after taking it. So we get about two good hours of optimum ACh use.

And you are right that too much Mestinon can flood the neuromuscular junction, especially if there is a more severe destruction of muscle receptors.

There is no way to tell, though, how many muscle receptors you have. That is why using Mestinon can be tricky.

100 - 110 mg. is the amount most neuros say is the max for ONE dose. Some push that, but it can be dangerous. At that "tipping point," more won't do you any good.

Why? Because Mestinon keeps AChE from going in and cleaning up the excess amount. That's what can cause a cholinergic crisis. Whereas not enough ACh causes a myasthenic crisis.

ACh is also about supply and demand. The more you do, the more ACh you use up and, therefore, the more you need. So some doctors will say to take a larger dose (i.e., 80 instead of 60 mg.) while you run errands, etc.

The amount someone takes doesn't necessarily relate to the severity of the disease. In my case, for example, I can't take the other drugs (contraindicated) unless I crash. So I take 90 - 100 mg, every three hours around the clock. For me, a consistent dose is best. But that's me! Every dosing amount/spacing has to be tailored to each person.

And it can take a while to know what works for you. The frustrating part is that that dosing can change, depending upon what other drugs you're on, what your activity level is, how you metabolize drugs, etc.

Some people also have stomach upset with Mestinon. That's because you need acetylcholine to MAKE stomach acid! So too much of it for some people causes too much stomach acid. I don't have that problem because I don't have stomach acid.

And what can make it even more confusing is that the nightshade foods, to a lesser and variable degree, do what Mestinon does. That's why so many MG articles talk about avoiding nightshades.

Caffeine is a cholinesterase inhibitor, too. Have you noticed how they have more warnings lately about caffeine? That's because it can cause an overdose of ACh in people without MG.

I hope this all helps. MG is not an easy disease, nor are the treatment options. Doctors don't often have the time to lay all of this out for patients. They usually talk in more simple terms. They forget that we're all inquisitive and need to know this information.

Funny, Celeste. I like the gory details.

Annie

Don't make any changes in Mestinon dosing without speaking to your neuro first!

Thanks for the easy to understand info on this subject.

I have not had this problem with Mestinon. I have a yogurt every day with my first meal. This change two weeks ago when I replaced the yogurt with a cup of Kefir.

I wonder if it is the active culture in the yogurt and the kefir that helps prevent the GI issues?

-Mark-

Thanks y'all!

I have a special reason to ask this.

I took a double dose by mistake, so I took 200 mg at once. At first I did not notice much, but very soon I started to feel funny.
I was drooling a lot, like drooling cups of water, started loosing my sight in a weird way and my voice got very, very weird. I felt very weird in my head. Are there muscles in your scalp to? It felt like worms or something...
I could still see colours, but focussing was all gone.

Went to the doctor, but they didn't make much of it. They left me waiting, alone. for almost an hour after only measuring my O2 and my blood pressure by a nurse. I felt very weird and weak. But a different kind of weak. When the doc finally came most of it already subsided. I just got MG weak once again.
Reason they didn't check on me faster was because you can take much more mestinon a day.

And yes, it went away without life threatening situations, but still...it was kind of scary. Leaving me like that makes me feel like I overreacted and should've stayed home waiting it to subdue. Come to think of it, that would have been better.

Edit: about the GI problems, never had any with mestinon. Even with the 200 mg I didn't have any. I guess we're just all different.

Ravenclaw, I'm sorry the ER doc didn't know what to do. If that happens again, tell him you're having cholinergic symptoms and might need a SMALL dose of Atropine to counteract it.

Have you ever had Atropine? If you've had an eye appt. you've had it! That's what they put in their numbing drops to dilate the eyes.

There are muscles on your head. I get tension headaches when the head/neck muscles get too weak.

The "worm" thing might've been the Mestinon affecting your peripheral nerves.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC487008/

You did NOT overreact! Even two hours in a cholinergic crisis can injure or kill someone. You could've stopped breathing. So it is absolutely not an overreaction to head to the ER. In fact, if it's a severe situation, there should be a 911 call!

I wouldn't recommend this, because you really need professional help when that happens, but I have used Benadryl on the rare occasion when I took a dose too soon. Your symptoms were not good and you did EXACTLY what you should have!

Speak to your neurologist and get his/her opinion on how to prepare or act in the future. You needed help right away, and the ER doc didn't help you. Ask your neuro to come up with a plan for you if this ever happens again. Some people are prescribed Atropine for times like this. But too much Atropine can throw you into a myasthenic crisis, which is why the ER (usually) is the best place for you.

I hope that helps.

Panorama, The live cultures help, but you are also getting sugar and fat that you wouldn't have in a pill. Only you can decide what works best for you.

Annie

Attached Files

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