Any Dr. Systrom patients here? - Mestinon (Pyridostigmine bromide) and safety profile

[marcjf]

Hello,

So I got a prescription for Mestinon from my doctor to see if it helps with exertional intolerance (most notably pain/discomfort after exercise). I am freaking out about it though.

For those that are not aware, this drug has been linked as a causal factor in Gulf War Illness (GWI). This is one of the papers on it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2393741/
They even replicated the issue in a mouse model, from another paper.

There is another very interesting thread on it, that I read before:

Pyridostigmine (MESTINON) can initiate a prolonged neurodegeneration
https://forums.phoenixrising.me/thr...initiate-a-prolonged-neurodegeneration.78232/


I know there are some doctors that commonly prescribe this, most notably Dr. Systrom, and I am pretty sure he is fully aware of this issue, which has been identified a long time ago. Do any of his patients in this forum ever asked him about this? Does he have a position?

It is very frightening to hear stories about prolonged side effects from veterans on this drug, including neurological damage and loss of teeth, for example. At the same time, this drug has already been through trials, it is hard to believe they would have not caught that. And we cannot ignore its almost miraculous effect in some patients. My guess is that nobody truly understands how this drugs works, and maybe there is a genetic or environmental pre-disposition to side effects.

At this point my symptoms are physical, and not cognitive, so I do not want to do anything that is too risky.

 

[Learner1]

I didn't like the side effects of pyridostigmine, but I have successfully been using Huperzine A to increase acetylcholine, which reduces POTS symptoms. I'd think the bad effects of pyridostigmine would be from taking pyridostigmine when one is not short of acetylcholine.

 

[dylemmaz]

im scheduled for an appointment with systrom in november. i’ve been on mestinon for 3-4 months now, prescribed by my cfs specialist. helps very well in avoiding pem for me. without it i crash pretty easily with flu like symptoms. on it, much rarer. i’m taking a dose of 60mg 2-3x daily.

the only noticeable side effects i’ve had were in the beginning when i first introduced the drug. had lots of muscle twitching and some bad stomach pains. no side effects anymore

 

[dylemmaz]

now i’m a bit worried. thought i had it good. my pharmacist did not warn me at all about those potential risks. thank you for the info!

 

[marcjf]

now i’m a bit worried. thought i had it good. my pharmacist did not warn me at all about those potential risks. thank you for the info!

My appointment with him is on December, but I got a prescription for now with my local doctor. Based on what he prescribes, I know Mestinon may come up anyway, so I wanted to know how I would react to it.

To be fair, I am not sure it is a big risk, or even well understood. This drug has been commonly prescribed for Myasthenia Gravis patients for years. You hear a lot of positive effects, and the side effects do not seem that scary: https://www.drugs.com/comments/pyridostigmine/mestinon-for-myasthenia-gravis.html

Maybe my biggest fear is the unknown, and lack of explanation. How can one drug be linked to complete different outcomes? Could it be that GWI patients had this outcome because of the pyridostigmine combined with pesticides?

 

[MartinK]

Hey, I did 3 month Mestinon, experimenting with doses, but go slow in start. No side effects, but no benefits :-/
Did nothing for my Me/Cfs and PEM problems. But I think its safe - be sure start slowly.

 

[Bander]

I've been on Mestinon for three years now. I built up slowly the first month to the point where I take 60mg pills three times a day. It gives me muscle twitching and sometimes muscle cramps, but I don't mind that much. The unpleasant side effect is that it gives me IBS symptoms (abdominal pain, sometimes diarrhea). I started going back to the gym about a month after starting Mestinon. That was very unusual for me. I do a very limited workout (just four exercises) with lots of rest, but I wasn't able to do that before.

I went off of it earlier this month for around two weeks just to see whether it was helping me and I just felt awful. It's clear that Mestinon is helping with my POTS issues. I was starting to crash after two weeks, so I went back on it. Now I'm convinced that it's one of the most useful drugs I take even though I dislike the side effects.

 

[marcjf]

I've been on Mestinon for three years now. I built up slowly the first month to the point where I take 60mg pills three times a day. It gives me muscle twitching and sometimes muscle cramps, but I don't mind that much. The unpleasant side effect is that it gives me IBS symptoms (abdominal pain, sometimes diarrhea). I started going back to the gym about a month after starting Mestinon. That was very unusual for me. I do a very limited workout (just four exercises) with lots of rest, but I wasn't able to do that before.

I went off of it earlier this month for around two weeks just to see whether it was helping me and I just felt awful. It's clear that Mestinon is helping with my POTS issues. I was starting to crash after two weeks, so I went back on it. Now I'm convinced that it's one of the most useful drugs I take even though I dislike the side effects.

Yes, I think I am going to give this a try, as soon as I am done with the current trial.

It is a pity though that the drug seemingly has no persisting benefits. Not very happy having to rely on perpetual use, considering side effects and risks. Although it may offer some assistance while looking for something better.

 

[Learner1]

It gives me muscle twitching and sometimes muscle cramps, but I don't mind that much. The unpleasant side effect is that it gives me IBS symptoms (abdominal pain, sometimes diarrhea).

Now I'm convinced that it's one of the most useful drugs I take even though I dislike the side effects.

Have you tried the supplement, Huperzine A, which has a similar mechanism to pyridostigmine, increasing acetycholine? I find it just as effective, without the nasty IBS symptoms.

Although it may offer some assistance while looking for something better.

I find Huperzine A is better.

 

[Bander]

Have you tried the supplement, Huperzine A, which has a similar mechanism to pyridostigmine, increasing acetycholine? I find it just as effective, without the nasty IBS symptoms.

No, I haven't. I'll check it out.

 

[marcjf]

Have you tried the supplement, Huperzine A, which has a similar mechanism to pyridostigmine, increasing acetycholine? I find it just as effective, without the nasty IBS symptoms.
I find Huperzine A is better.

Thanks for the information. After you mentioned it, I found some resources from the Myasthenia Gravis community talking about using Huperzine A instead. Seems quite interesting, as it has a longer effect.
But different from Mestinon, Huperzine A crosses the blood-brain-barrier. I am not sure what it means to us though, in terms of effectiveness. Do you notice any remarkable difference? Or just the side effects?

 

[Learner1]

Thanks for the information. After you mentioned it, I found some resources from the Myasthenia Gravis community talking about using Huperzine A instead. Seems quite interesting, as it has a longer effect.
But different from Mestinon, Huperzine A crosses the blood-brain-barrier. I am not sure what it means to us though, in terms of effectiveness. Do you notice any remarkable difference? Or just the side effects?

I found it works better, with fewer side effects at 200mg. However, it's not a prescription drug, so no pharmaceutical company, doctor, or PBM profits from it, so it doesn't get the press...

 

[Momentum]

I found it works better, with fewer side effects at 200mg.

Hi Learner 1, do you mean 200 mcg? I jut did some quick research and it all pertains to 100-300mcg.

Did it also help you with cognitive function, memory, brain fog, etc? It seems to be used for Alzheimers and other cognitive issues.

And have you found a brand that seems to work better? It looks like some is extracted from the herb and others may be synthesized (not sure about that though). Thank you!

 

[Momentum]

I also found this, "In addition, supplements that inhibit acetylcholine breakdown, such as Bacopa monnieri, Ginkgo biloba, and huperzine A, have been associated with improved memory and brain function"
and
"In general, choline supplements, such as alpha-GPC and citicoline, are safe for most people and rarely associated with negative side effects."

Have you tried taking any choline supplements?

The brain benefits would be secondary for me. I'm mainly interesting in raising my acetylcholine to see if it will improve my muscle weakness.

 

[ChookityPop]

Hey, I did 3 month Mestinon, experimenting with doses, but go slow in start. No side effects, but no benefits :-/
Did nothing for my Me/Cfs and PEM problems. But I think its safe - be sure start slowly.

What dose did you do?

 

[Pyrrhus]

Related discussion:

Dr.Systrom seems to have quite a success with Mestinon on his patients.
I'd be interested to hear what others WHO GOT WORSE on Mestinon found to be helpful.

https://forums.phoenixrising.me/threads/for-those-who-got-worse-with-mestinon.78121/

 

[Pyrrhus]

Update from original poster @marcjf :

I did however book a consultation with Dr Systrom. [...] In the meantime, however, I was recommended to go for Mestinon. I tried it months ago, without noticing much difference, but he said the dose needs to be higher.

 

[ChookityPop]

Update from original poster @marcjf :

I have felt awful all december. And on new years eve I was desperate so I tried 30mg Mestinon. I had aldready taken 100mg Aspirin and 20mg Lumbrokinase as well so I dont know what made the difference but I actually felt quite a bit better in terms of more energy and maybe a little more robust?

I was a little put off when I read about the association between Mestinon and Gulf War Syndrome. But I will trail Mestinon for a while until I recieve Huperzine A at lest.

I read this comment somewhere "ME/CFS sometimes seems to involve impairment at muscarinic acetylcholine receptor sites in the CNS. I think Huperzine or ParasymPlus should (theoretically) actually be better for ME/CFS than Mestinon because the central nervous system gets more acetylcholine without the muscles getting too much (and starting to twitch). What do you think about that Pyrrhus?

 

[Pyrrhus]

I think Huperzine or ParasymPlus should (theoretically) actually be better for ME/CFS than Mestinon because the central nervous system gets more acetylcholine without the muscles getting too much (and starting to twitch). What do you think about that Pyrrhus?

Mestinon, Huperzine A, and ParasymPlus all seem to boost acetylcholine in different ways. I couldn't say which of these would be appropriate for someone's orthostatic intolerance or exercise intolerance, since different people can have very different responses.

Also, we should avoid confusing acetylcholine with epinephrine/norepinephrine. Acetylcholine, epinephrine, and norepinephrine are all neurotransmitters used by the autonomic nervous system, but they are used at different locations in the body.

At some locations in the body, the autonomic nervous system uses acetylcholine to bind to cholinergic receptors.

At other locations in the body, the autonomic nervous system uses epinephrine or norepinephrine to bind to adrenergic receptors.

In another thread, I made this comment:

I honestly don't understand why Systrom first tries a cholinergic drug like mestinon instead of first trying an adrenergic drug like strattera/atomoxetine or midodrine. His very own research implicates the adrenergic receptors that control the constriction of blood vessels...

For responses to my comment, see:
https://forums.phoenixrising.me/threads/for-those-who-got-worse-with-mestinon.78121/

 

[Learner1]

Mestinon, Huperzine A, and ParasymPlus all seem to boost acetylcholine in different ways. I couldn't say which of these would be appropriate for someone's orthostatic intolerance or exercise intolerance, since different people can have very different responses.

Also, we should avoid confusing acetylcholine with epinephrine/norepinephrine. Acetylcholine, epinephrine, and norepinephrine are all neurotransmitters used by the autonomic nervous system, but they are used at different locations in the body.

At some locations in the body, the autonomic nervous system uses acetylcholine to bind to cholinergic receptors.

At other locations in the body, the autonomic nervous system uses epinephrine or norepinephrine to bind to adrenergic receptors.

In another thread, I made this comment:


For responses to my comment, see:
https://forums.phoenixrising.me/threads/for-those-who-got-worse-with-mestinon.78121/

Well, I wouldn't do well with midodrine or Strattera. I have hyper POTS and tend towards low dopamine and high norepinephrine. I think it's wise to understand one's biochemical status and working with an experienced doctor before launching off with one of these drugs.

Huperzine A has been as effective as pyridostigmine, but without the nasty side effects.