What is Mestinon (pyrostigmine bromide) supposed to do?

[Sarah Tee]

I am feeling rather brain fogged today.

I read the info on it here:

Quote

Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors (Grubb, 2002). Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction.

Could anyone explain very simply what unplugging these receptors might be expected to have? Is it just “allow your autonomic system to work properly” or is it more specific, like giving you more muscle strength?

[MikeO]

Simple explanation It temporarily improves nerve-muscle transmission which helps muscle strength.

[Sarah Tee]

On 10/27/2022 at 11:27 PM, MikeO said:

Simple explanation It temporarily improves nerve-muscle transmission which helps muscle strength.

Thanks, MikeO. So it is supposed to work in POTS the same way as it works in myasthenia gravis?

I am a bit confused because, in the studies I found on its use in POTS patients, the improvements weren’t just muscle strength.

[MikeO]

7 hours ago, Sarah Tee said:

Thanks, MikeO. So it is supposed to work in POTS the same way as it works in myasthenia gravis?

I am a bit confused because, in the studies I found on its use in POTS patients, the improvements weren’t just muscle strength.

Well it is used for other disorders/uses as well. Not the first drug to have a off label use. I did take it for a while to help with my orthostatic hypotension. It worked to some extent by increasing my peripheral resistance when getting and when standing.

Seeing it favors the parasympathetic nervous system you are not always in that (flight and fight mode) which does help with GI motility, dry mouth etc...

Vanderbilt has a quick explanation for the use for POTS.

"Acetylcholine is used in both the sympathetic and parasympathetic nervous systems, but is more prevalent in the parasympathetic nervous system. Because of this, it was hypothesized that pyridostigmine would increase parasympathetic nervous system activity and therefore decrease heart rate in POTS."

https://www.vumc.org/autonomic-dysfunction-center/pyridostigmine-pots

[Sarah Tee]

Thanks, @MikeO. I see now that Mestinon helps helps acetylcholine receptors to work better (oversimplifying), and these receptors are present in various places in the body, including in the muscles to control voluntary movement and in the autonomic system.

Unfortunately it doesn’t seem to have worked for me.

[MikeO]

3 hours ago, Sarah Tee said:

Unfortunately it doesn’t seem to have worked for me.

Sorry to hear it did not do anything for you. I did just put a request in to do another retrial of the drug. I hope the timing is right this time. 

[MikeO]

Update i did get my request to retrial Pryidosigime granted. Guess i will see how this pans out in the next couple of weeks.

[Sarah Tee]

On 11/4/2022 at 3:42 AM, MikeO said:

Update i did get my request to retrial Pryidosigime granted. Guess i will see how this pans out in the next couple of weeks.

I hope it goes better for you this time. I may try again at another time. It made me generally unwell for about a week, then that passed, and it seemed to do nothing.

I stopped taking it because I needed a mental break. I am seeing a new specialist and it has been hard because he doesn’t know my situation yet.

I suppose I am glad that I tried Mestinon, although I am still confused as to why the specialist prescribed it. I recently felt much better after a short course of oral steroids for allergies (unrelated to dysautonomia), so I asked him if that could indicate auto-immune involvement. He said he doubted that. But at the same appt, he prescribed Mestinon, which seems to help people who have auto-antibodies plugging up receptors.

I didn’t question him on it, because I had to bring along my carer to the second appt to read him the riot act about a few things, but I will ask him some time.

On the plus side, he has organised to get me a trial of saline infusions at the hospital he is connected to. I was supposed to have this trial in Feb and it never happened despite months of wrangling with my local hospital.

[MikeO]

Thanks @Sarah Tee. So far i have been tolerating the drug better this go. I have noticed that the buzzing or vibrating sensation in my left leg has improved and i am having less orthostatic episodes upon standing and when i do i have recovered more quickly. Also my dry mouth has improved greatly i think just for this i would continue to take Mestinon. 

[MikeO]

Well today i was approved to up my Mestinon dose to 60 mg three times a day. The clinic so far is liking my feedback. I hope this goes well. I have had some orthostatic setbacks but i have been fighting this for some time. My Doc also does not me to take a standing blood pressure any more. concern is that i may fall or faint by doing so. They don't need the standing bp's as well as i have been well documented for orthostatic hypotension.

So far the Mestinon does help overall i just have to work on the other stressor which is food. 

[akj]

Thank you MikeO and Sarah.  My cardiologist, who diagnosed my orthostatic intolerance, has suggested trying pyridostigmine / Mestinon.   Midodrine, water, electrolyte solutions, compression garments have been my treatment regime.  In another blog I mentioned I had a reaction to my3rd COVID booster, omicron bivalente and was hospitalized.  Before this incident I thought I was managing my symptoms pretty well.  But after almost six weeks I have not got back to “normal.”  Dizziness, elevated HR on standing, nausea, etc.  So as we all do I had been searching for info on this drug, as I would really like some improvement.  Appreciated  what you have shared. Thank you.