Feeling really good
 

Thought i'd share some great news and how i got there.
After 10 weeks of mestinon, 60 mg every 2-3 hours up to 6 per day, 180 at night, three weeks of prednisone at 10 mg per day and three weeks at 20 mg, laast week i had a few days feeling pretty good (colleagues and friends said i was back)

I think i overdid it a bit so thursday and friday i was feeling not so great but sunday i went horsebackriding for first time in 2 months. Also today with doctor approval, i increase mestinon (i felt it was wearing off) to every 1.5 to 2 hours and wow, today has been great! Not that i am running a marathon but relative to how i have felt for the lasT 6 months, great!

I hope i am not just on upswing of the prednisone mood swings they say you can get from prednisone but since i dont think anyone else is tsking mestinon as frequently as 1.5 to 2 hours, i thought i would share.

Awesome!!

Riding the horse did it!

Steph, I'm very glad that you're feeling better. And I apologize but I'm going to be a "wet blanket."

Yeah, you should celebrate every success when you have MG. Absolutely. But please don't forget that MG pushes back when you push it. It's the biggest autoimmune bully on the block! You might think you have it under control but then you can push yourself and all that ground you gained on it disappears. And then you need even MORE drugs and can have even more side effects.

There is a point where most MG experts won't go with Mestinon. Yes, there are exceptions to this but it's not usually done with newly diagnosed MGers! One, they won't go shorter than the two hour dosing. Two, they don't go above the magic 100 mg. per dose. Why? The answer for both is the same: They don't want you to flood the neuromuscular junction and have a cholinergic crisis.

There are a lot of studies on this, so you can go to PubMed and do some research.

In case you don't know, since you're new at this, a "myasthenic crisis" is when you don't have enough acetylcholine and get weaker. A "cholinergic crisis" is when you get too much acetylcholine and get weaker. You don't want either one to happen!

Some doctors might think that since Mestinon wears off so quickly, what the heck, what harm would a bigger or sooner dose do? The reason is that it doesn't take more than a minute to crash MG and go into a crisis.

And taking a bigger dose during an activity (or before and after) makes sense. But if you take a larger dose when your body doesn't necessarily need it, you can get too much. It's a "supply and demand" situation with MG. If your body isn't using up that extra acetylcholine, it sits there in the neuromuscular junction wreaking havoc.

I don't want to lessen the big accomplishment you have made. The problem with MG, however, is that it is not a "static" disease and you need to really understand all of the potential issues with it. I hope you understand why I felt the need to bring this up!

Annie

I think from the way you describe it that you have a good response to prednisone. Which is great :winner_first_h4h: and gives a lot of hope that you will be one of those who eventually achieve a good and long lasting control of their illness.

At the same time, I am not sure it is a good idea to increase the dose of mestinon (even thought I can fully understand why you are tempted to do so).

Not because I am too concerned about a cholinergic crisis (you would have many signs before you go into that) but because it gives an illusion of doing better than you really are.

As I explained in another thread, what mestinon does is recruit more AchR. (we normally have a surplus of them). This means that next time you want to do something you will have even less.

Further more (and this is the wisdom of my occupational physician) people will be very glad to see you better and doing more (mostly at work) but will also be very disappointed when you can do less. They can adjust to a fairly constant decreased level of function, but not to an up-down level of function.

Taking more mestinon and having a seemingly better level of function and then going to a less good level again (even if you don't crash) will be confusing and frustrating for you and everyone.

So, with this illness it is much better to slowly recover and not confuse your body, yourself and those around you.

And this is the wisdom of my neurologist who always says that in MG he doesn't like dramatic recoveries, because they are many times followed by dramatic worsening. He much prefers a very slow and gradual improvement.
At least from my personal experience this is very true.

Steph, I'm sorry. This post is about you.

Annie,

At least from my experience (regarding myself and other patients) when neurologists have to pull their patients out of crisis, it is either because they or the patient (or many times both) neglected to recognize earlier signs of it.

I agree that when you don't know much about the illness (in the early days) and have a neurologist with a similar level of knowledge the risk of this happening is quite significant. ( I can sadly attest to that from my own experience).

Like you yourself say . You only recognized it when you reached dangerous levels which could not properly sustain the basic needs of life.

Mestinon works on the AchE not only in the NMJ (nicotinic recpetors) but also in the autonomic nervous system (muscarinic receptors). Activation of the muscarinic receptors leads to GI symptoms, hpersalivation etc. Those would be evident long before you have reached levels that can lead to muscle paralysis.

I will try and explain. In normal muscle function we use only a small portion of the muscle's ability. We have a lot of AchR which are not activated. (this I believe is called "the safety margin"). Even with normal maximal activity we don't use all our muscle's potential. That's why normal people can do the same action many times without overt fatigue of their muscles.
If we have say half of the amount of AchR we have less "safety margin" but we still use the same proportion of the muscle's ability. Taking mestinon, leads to recruiting a larger proportion of those recpetors which leads to better muscle force at the price of decreasing the "safety margin" even further.

The picture becomes even more complicated if the problem is not with the AchR itself, but a further step in muscle contraction. In that case recruiting more AchR and more muscle fibers can lead to a rapid depletion of the ability of that downstream protein.

That is a possible reason why some patients with MuSK MG/seronegative MG have worsening of their symptoms with mestinon instead of doing better.
This is also why ( I believe) they can have significant improvement followed by rapid deterioration. (or what Osserman called "brittle myasthenia" in which the patient would rapidly go from "myasthenic crisis" to "cholinergic crisis").

Regardless of the possible explanations, I fully agree with you that patients with MG (and even more so in the early days of their illness, when they have not yet learned to recognize the pattern of their specific illness) should err on the side of caution.

I hope you continue to get better, Steph.

Glad you are seeing positive results Steph and I hope they continue. It is good to see a few success stories here because it gives us hope. I know I am still new at all this and the biggest thing I have to learn is to be patient while waiting for results, But I refuse to give in and let this get the best of me.

Thanks for your story it helped me smile a bit this morning.

Roger

Mestinon mode of action?
 

I am seeing mixed responses here about mestinon. I thought it was an acetylcholinesterase inhibitor. Someone said that it acted on acetylcholine receptors. Does it do both?

The problem with digestive stuff as I understand it is that it just allows more acetylcholine regardless of the type of receptors. We want to target nicotinic receptors but since it is just slowing the breakdown of acetylcholine, the muscarinic receptors also get bombarded; thus the digestive dysfunction.

I may be wrong. Am I?

Steph, I think that people's concern is that you don't overdo the drugs. I am so glad that you are doing better. I hope it continues.

Better living through chemistry. Sounds like something I heard when I was in college.........

Thanks for the comments. I appreciate, welcome and encourage the feedback and insight of those more experienced and knowledgeable about MG. i posted with goal of sharing good news but also hoping for feedback, so thanks again. I am first to admit medical things are sooo way out of my wheelhouse.

I am trying to do the right things for myself to make best of my situation and i am certainly trying to be aware of and respond to what my body is telling me is ok. (last night i slept 9.5 hours bcs when i was awakened after 8 i was still tired). Re the mestinon increase, i think my body generally had a very high tolerance to meds and after 2+ months of mestinon i was confident that at about 2.5 hours afteer dose i was noticing weakness, vision issues.

I am somewhat obsessive about things in general so since starting meds i have kept very detailed notes about timing and response to meds - otherwise i found i could take pill and then 10 minutes later not remember if i had or not.