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.

Isnt it better to take more mestinon than more prednisone?

To a point, I would think that this is true. There are limits to what the body will tolerate of both.

That is a very good question.

Basically, the answer is yes. If you can get along with mestinon alone it probably the best as it has a very good safety profile and to the best of my knowledge very rare if any long term side-effects.

But, the other side of the coin is that mestinon has no effect on the illness itself. It's like taking tylenol for a headache.

Steroids can lead to remission in some patients. But, you need to reach a dose which leads to full control of the illness. So, increasing the dose of mestinon while you are increasing the steroid dose can be confusing. (and this illness is confusing enough any how).

In fact one of the people on this forum (don't remember who and when) mentioned that his neurologist didn't want him to take any mestinon, just steroids. And there is some sense in that.

Some people end up taking only symptomatic treatment either because they had no response or had serious side effects with immunsupresive treatment.

I personally think that when you have a disease which alters your life, it makes sense to try and treat it with reasonable treatments before deciding to come to terms with it and use only symptomatic treatment.

It sounds like you are having some response with a relatively low dose of prednisone, so it would make sense to gradually increase it until the max. effect is reached and then start tapering it down with or without another medication such as imuran.

There are patients who are stable for many years on a very low dose of medications.

No, it doesn't work directly on the AchR. It slows down the breakdown of acetyl-choline, thus leading to more acetyl-choline in the synapse which in turn activates the AchR.

That's pretty much what it does.

I suspect that like many others with MG I have additional health issues (I know Hashimotos) none of which are as disabling as MG but many of which seem to be helped from the med's (mostly since started prednisone). For ex - for past couple years my menstrual cycle has been brutal, very heavy and very painful - last month after 3 weeks of prednisone was totally normal. Another ex off the top of my head is I have had chronic constipation since GBS in 1984 now almost normal.

That was me Alice he wanted to wait and see how I would react to the plasmapheresis and the prednisone and wait on the mestinon. He feared the mestinon would mask what the other treatments were doing and wanted me to tough it out for a month before trying it.

Roger,

That is interesting approach but for me that would not be option for me as every day without relief is causing extreme financial hardship. Waiting any longer for relief would certainly cause me to lose my law practice/all income/support.

So clearly it is important that we all remember that not only is MG different for everyone, everyone has different circumstances that come into play when deciding how to proceed with treatment.

Steph, I really am so frustrated right now I would love to try mestinon. I admire all the courage I see in so many of you that have suffered so long. I am just about 5 weeks since my first noticable sypmtoms and 3 weeks from diagnosis. I see so many people not able to find a Doctor to diagnos them. In some ways I was lucky I had all the classic signs and found the right Dr so quickly. He ordered the right tests and even took videos as a teaching aid during my examination.

I may cave before my November appointment and ask to try the mestinon but I am trying to do it his way for now.

That is true, but only to some extent. Because this illness doesn't give a ****about your life circumstances. In fact, if at all, it really enjoys destroying all your plans. :D

I think there is something very true in my neurologist's philosophy that this illness requires that you be patient enough with it's tough healing process and trying to find shortcuts can only make it much harder and longer.

I think this is also what Annie was trying to warn you about.

You seem to be on the right track, so just stay there and move slowly until you reach your destiny.

Roger fyi i had symptoms for years (had been told in my head though) and over the last year had really deteriorated to point of not being able to function, support myself.

Steph, I hope you are not thinking I am being critical of your treatment. I am pleased it is working for you and I agree if you find the combination that makes things work for you that is fantastic. I hope I too can find that combination. I just got that call that my CT scan came back normal and there are no issues with the thymus gland. Is it odd that I am feeling a bit bad that was what they found?

FYI to all - I apologize if I ever have or do offend anyone. That would never be my intent
Also please rest assured it is really hard to offend me...comes from years of being a divorce lawyer! I recognize and I appreciate that everyone has their own perspective and I think that an extremely valuable feature of this forum.

I have never ever been a social media person...I am actually a very private person in real life however the whole MG experience is such a new and foreign experience for me I was compelled to do what I felt I needed to do to come to terms so to speak. To that end this forum in particular has been very helpful for me in that it seems to strike a good balance between social and educational. Others may find other forums more to their preference as I know of some that are more personable.

Roger, I dont think there is a right or wrong way to feel or respond about any of this

I fully agree with that.

I think we are all talking from our own experience and the knowledge we have (been forced) to gain.

We want to help others not fall into the same pitfalls or make similar mistakes.

I, for one, can't say that I have found the magic potion for MG.

All I can say is that my neurologist is very optimistic about me and maybe he knows something that I don't. ( I promise to share this knowledge with you once I do :)).

I also think that I have learned to live with it reasonably well. (but I also can't ignore the fact that I have been lucky in many other ways and some of my solutions may not be applicable for others).

If what I say can help someone-that's great, if it doesn't-that's OK.

About forums
 

For me I find whatever quality I am looking for in any given group, and sometimes a quality just takes longer to reveal itself in different places. I have been a member of two other forums and occasionally I go to another forum just because I have already started a thread there. This forum doesn´t exactly send a welcome basket to each new member - however if people bother to stick around then they pick up on it´s intention which amounts to exactly the same thing :hug:. I do know I am equally as hypersensitive about posting anything on any of the forums (my ideas/feelings - other peoples ideas/feelings) but I also know that I am braver on this forum than any other. I just read something in Scientific American Mind magazine, that communication on internet can sometimes come across harsher than in real life, and they attributed it to a lack of eye contact!
Well I think everyone here is doing a pretty darned great job - all things considered :grouphug:

Steph, the medication is an important practical issue which I know nothing about, but I can wish you well during this really happy transition & time for a breath of fresh air. Enjoy it :circlelove:

Anacrusis

Alice
Your contributions here have been invaluable to me! Thanks
Steph