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

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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.
 

dylemmaz

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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
 
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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

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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.
 
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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.
 
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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

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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.
 
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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

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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...
 
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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!
 
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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.
 
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