Simple question really, though it may be difficult to answer. I've been diagnosed with MG now for about a week. The doctor began me on Mestinon. 30mg three times a day for three days, then 60mg, 90mg, and finally 120mg. He suggested that I stop moving up the dose when I get relief. I am currently on the first 24 hours at the 90mg level and realized, I don't know what relief looks like.

Feeling normal seems a bit too good to be true - if I could even remember what normal looked like. Or is it that instead of starting the breakfast dishes standing and finishing the breakfast dishes on my knees - I'm able to do all the dishes on my feet before I go take a nap?

I took the 90mg dose about an hour ago and am sitting here typing this trying to keep the sweat that's falling freely from my head and face from landing on my keyboard. This is not relief by any definition I am using but maybe I'm thinking of the mestinon as a magic bullet. Maybe what I should be expecting is small improvements that I'm missing because I'm focused on looking for something larger.

Thoughts, suggestions, advice?

Interestingly enough, my neurologists nurse just called me a few moments after I posted this and I asked her the same question. I got nothing. "If you get any relief..." I asked for clarification: Are we talking a 5% reduction in symptoms or 55%? She can't answer that. Honestly, if it's 5%, I'm not sure that I'd notice or be able to determine that from day to day or hour to hour fluctuations anyway.

Anywho, I'm really hoping someone can give me something to look for or a better definition of relief.

Hi, Angell. I'm sorry you have MG, but it is manageable. You need to understand how MG works, though.

MG is all about more weakness after a repetitive (i.e., brushing hair) or sustained activity (i.e., grasping an object). And it also depends upon how long you do something or how intense any activity is. It also depends upon whether or not you rest in between activities or if you "push" MG.

MG does NOT like to be pushed. It will push right back.

Depending upon how bad your MG is at the time, you can become a little weaker or anywhere up to a lot weaker. This is not a predictable disease, and that's the frustrating part of it. It's not as simple as "Do this, then this happens."

The worse MG is, the more time it takes to recover.

There are many more things that can make MG worse than can make it better. Heat, stress, lack of sleep, unhealthy diet, other health issues, infections, etc. can make MG worse.

Mestinon is only a "helper" drug. It does not address the underlying autoimmune process going on.

Okay, this is technical, but I think it helps to understand what's going on. I'm not going to assume that you already know this.

Acetylcholine (ACh) is the neurotransmitter that goes from our nerves into our muscle receptors to make our muscles strong. I call it muscle gas.

Our bodies have an enzyme called Acetylcholinesterase (AChE). Its job is to "mop up" ACh when it's done with its job of making muscles strong.

It's a "checks and balances" system in the body so that neither of those two things build up.

In MG, the muscle receptors are attacked by antibodies. Therefore, we don't have as many muscle receptors for that muscle gas to go into.

What Mestinon does is to block the enzyme so that there is more ACh in our neuromuscular junction; so that we can use the ACh for a longer period of time.

Too much Mestinon, however, can cause too much build up of ACh and we can have side effects of the drug such as increased saliva and sweating (which you mentioned). An MGer can also go into a cholinergic crisis, which can be life threatening.

MG Crisis: Not enough acetylcholine.
Cholinergic Crisis: Too much acetylcholine.

More is not always better with Mestinon. Most MG experts, especially with a newly diagnosed MGer, or "newbie," will not go above 90 mg. per dose because the risk of a cholinergic crisis is greater.

Sometimes it's better to have a lower dose and increase the spacing in between doses.

Mestinon kicks in after about 1/2 hour. Two hours after that, it wears off. So there is about 2 out of 3 hours when you have Mestinon at full effectiveness. DO NOT take it sooner.

CAUTION: Do not play around with dosing without speaking to your prescribing neurologist first. You could end up in a crisis!

So many MGers I know don't need a clock to know when they need Mestinon, even though I still write down every dose I take. I feel weaker when Mestinon wears off (a half an hour or more before I can take more). And I will feel stronger a half an hour later.

This sounds weird, but listen to your body and not your brain. It takes some time to "feel" when muscles are stronger. Give yourself time to get used to all of this. And putting a percentage on relief can fool you in the beginning of this disease. It's not about math, it's about how you feel.

And perception can fool you. You can become weak so slowly that you might not notice that you are doing badly. If you become weak quickly, that's easy to notice.

I'm sorry if this sounds brutal, but you won't ever feel "normal" again, unless you go into remission. There's both drug-induced remission, where you are still on drugs, and drug-free remission, where drugs (like Rituximab) have put you into remission and you don't need drugs anymore.

It's really hard to get used to the fact that your life will need a new normal. It might be the one reason why so many newly diagnosed MGers have a myasthenic crisis. They want their old life so badly that they push too hard.

You do NOT want a myasthenic or cholinergic crisis. They are damn scary. What would that feel like? Well, if you can't move well, breathe well, or can't swallow, or are generally very weak, that's an MG crisis. At that point, you need to dial 911, because you cannot tell how quickly MG will tank or how severe the weakness will get.

We all know how frustrating this disease can be, however, we all also know that there are treatment options to help. And we know that a new normal does not necessarily mean a reduced quality of life! But you have to be smart about how you manage MG!!!

If you think you can do what you could on a daily basis before you got MG on ONLY Mestinon, well, you can't. I'm sorry, but that's the truth.

You should probably make an appointment with your neurologist to discuss all treatment options. Only you can decide what will work best for you.

What else can we do to help? We all know how overwhelming this can be. And there is a LOT to learn about MG, such as the fact that some drugs can make it worse, too.

I'm not recommending anything, but it seems to me that you are taking too high of a dose and having side effects and, possibly, overdose symptoms. Please read the PDF below.

Take some time to read past posts, and keep asking questions. We're here to help!

Annie

Attached Files

Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 33 views)

First of all Annie, thank you for such a well thought out, and thoughtful post.

*nods* Last night I was drowning in a puddle of saliva on my pillow that built up faster than it could be absorbed - and faster than l could get into stage 2 sleep.

I am taking it as directed, not based on symptoms - so look, I did something right! lol

Increasing my dosage is, for the moment, just following doctors orders but, and this seems like a big but to me: I have far felt no difference re: strength within the 2-3 hour window any other window. Getting up and doing the dishes (for instance) takes just as much effort a half hour after a dose as it does six hours after a dose.

I'm a mathematician - it's always about the math. j/k, okay - I hear you.

Not an issue (slowly). Even before meds it went something like this: Figure out how to stand up - go outside - work till drool is running down my chin, I'm slurring my words and I'm stumbling around like a drunk on Friday night after the bars close. Usually I've got about an hour.

Thanks for being blunt. And really, I'm okay with that - it's just my body after all. I am not my body though it is useful to get around.

I do have a tendency to push too hard, but I think it's a personality characteristic rather than a resistance to what is.

I'm pretty sure I've had at least a few of these crisis's before diagnosis. They are not fun, you're right.

To tell you the truth, the most frustrating thing is not knowing what this new normal is supposed to look like so I can aim. Or figuring out how to manage it without cryptic conversations that go like:

Increase dosage until you get the desired effect.
What's the desired effect?
It's different for everyone.
ah-huh... what??

No problem, I can live with that.

I am awaiting a cat scan (tomorrow) to check for tumors and then the neurologist is going to call me to set up another appointment.

So you're saying that I should stop taking the Z-pac? j/k - not taking it. You've done me a great service with this response already and I'm very grateful. I guess having some idea - any idea, of what to feel for when I'm 'feeling' that my muscles are stronger...because I don't feel anything but weakness all the time. There is never a time, for instance, that I say, "I totally have the energy to go do the dishes right now." It's more like, "Okay, time to suck it up and go do it anyway.

I have made the decision to back off to 60mg until I see my neurologist next week. Again, thank you so very much for the time you've spent trying to help me.

For me mestinon means not choking on my food or saliva, being able to go up the stairs to bed, making it to the bathroom before I have to urinate, not falling, stumbling and tripping, not slurring my words.

When I was first diagnosed with MG, I tried to live a normal life---do the housework, yardwork, shopping etc. I only made my MG worse which sometimes lasted for days. By doing too much, you may be preventing yourself from feeling any improvement from mestinon. Try to slow down and take it easy and notice how you feel a half hour, 2 hr and 4 hours after mestinon to see what kind of improvement you have


Good luck
kathie

Kathie,

Thank you for the perspective, I didn't have one before now. Unfortunately, I am awaiting Social Security and have zero income. Rent is traded for work on the farm. I'm guessing that homelessness won't improve my MG symptoms much...but repairing a fence in the south forty isn't doing much for it either.

I'm sure I'm overdoing it, especially after reading your post (which I am grateful for), but not sure how much more I can slow down and still keep a roof over my head. I'm certain of one thing though - I'm not the only one who has been in this situation though, so we'll muddle through the best we can.

Angell, You're very welcome. I wish more doctors could explain this damn disease, or have a physician's assistant who could take more time to do it.

I would never tell anyone to take or not take a drug. You are on ZPak? For an infection? Don't stop it. Some MGers do fine on that or Biaxin. DO NOT, however, take Ketek/Telithroymcin! It has a black box warning on it for MGers. Also, the Quinolones now have a warning for us.

Just look for any signs of MG becoming worse while on it.

I take Mestinon syrup, mainly because I don't have stomach acid and it absorbs better for me. I can also titrate the doses in a far smaller way.

The other thing about Mestinon is that if you don't use your muscles a lot and are more sedentary, you may not need as much Mestinon. The more you do, the more acetylcholine is used up.

Well, math is the key to the universe, but not to MG. MG is more of an instinct thing.

MG just put me to sleep for a while. The little brat can do that to you when you least expect it. Don't fight it, because it's the body telling you what you need.

It's time to renegotiate your contract. I'm from a family of farmers. No way would they expect someone to do physical labor if they had MG. They would ask them to do things like making meals, planting seeds, or some easier task. I'm really sorry you are in that position!

And I'm glad you backed off on the dose. However, if you are showing signs of an MG crisis, don't think because you may have had them before that it's okay to sit at home. A hospital has to help you, insurance or not.

Take it easy!

Annie

For me 'relief' means that I can walk without waddling and without my legs feeling very very heavy. I am also able to see without double vision. I was able to get rid of the prisms in my eyeglasses. I'm on 60 mg mestinon every 4 hours. I really appreciate the lessening of symptoms but I am nowhere near "normal." It doesn't take much to tire me out altogether.

Wish I could crawl through the computer to give you a hug... or e-mail you some stomach acid or something!

A big thank you to you, Kathie and everyone who takes the time to pass on the help they received when they first got here.

I forgot to ask—how were you diagnosed? Do you have the ACh antibodies? MuSK? Those two "types" of MG can be different. And Lambert-Eaton Myasthenic Syndrome (LEMS) can look like MG, too. As can one of the congenital myasthenic syndromes (CMS), which is not autoimmune, but genetic in cause. FYI