Mestinon?

[Belbyr]

I would like to know if anyone has tried Mestinon before?

Did it help symptoms?

Any side effects?

I see Dr. Systrom is a big believer in it and claims good success with his CFS patients.

 

[Gingergrrl]

I tried it in 2014 (for POTS) at 1/8th of a pill and it gave me respiratory depression but I am not representative of anything useful

I am tagging a few people who I think have tried it (and hoping I am not wrong!) @Mel9 @RebeccaRe @rel8ted

 

[Mel9]

Yes, I had an instsnt good reaction to Mestinon. For a short while all symptoms disappeared.

My doctor warned this was remission, not cure but I take a tablet every three hours and now life is so much more pleasant.

My advice would be 1) to start at low dose and see if you have a positive reaction.

2) not to be fooled into doing too much because you feel so good...severe PEM will follow.

 

[*GG*]

It didn't help me, I tried it after seeing Dr Systrom talk at Dartmouth Hitchcock Medical Center in Hanover, NH. I think it gave me a case of Bells Palsy, luckily that resolved. I tried the max dose of 180, again, it did not help me, could be different for you. But this is a drug for autoimmune issue like myasthenia gravis

 

[Belbyr]

It didn't help me, I tried it after seeing Dr Systrom talk at Dartmouth Hitchcock Medical Center in Hanover, NH. I think it gave me a case of Bells Palsy, luckily that resolved. I tried the max dose of 180, again, it did not help me, could be different for you. But this is a drug for autoimmune issue like myasthenia gravis

Dang, trying the max dose must have been crazy!

 

[Rebeccare]

I took mestinon for about six months or so. I didn't notice a dramatic difference in my functioning, and I experienced side effects (shortness of breath, chills, etc) that were bad enough that I stopped. This seems to be one of those drugs that works well for some, but not others.

 

[rel8ted]

I tried it without any significant results, but it was during a time of pretty bad digestive issues. I’m not really sure if I was absorbing anything much at that time, so my experience is prob not that useful.

 

[Belbyr]

I took mestinon for about six months or so. I didn't notice a dramatic difference in my functioning, and I experienced side effects (shortness of breath, chills, etc) that were bad enough that I stopped. This seems to be one of those drugs that works well for some, but not others.

Yeah that is what I hear... What dose were you on, is Mestinon a tablet that can be cut?

 

[i-lava-u]

I've been taking it since Nov. 2018 for severe POTS

I now take 3 doses, 60 mg each, 5 hours apart (8 am, 1 pm, 6 pm)

Did not have any side effects (have had many bad med. reactions in past to other meds.)

Helps POTS somewhat, but didn't touch ME/CFS, actually, made it worse for a time (and this was bad since mostly bedbound to start with )

I agree with @Mel9...be very careful with pacing on this med. it easy to do too much if it helps you, but you will pay for it heavily with PEM!

Am still learning what "signals" to pay attention to now. It has been difficult.

But, as an example, I can now load the dishwasher (on days I am well enough) standing part of the time and sitting on a stool all in one go. Before this med, it would take me multiple attempts throughout the day (because POTS symptoms so severe)...like rinse 4-5 dishes, sitting on stool, lay down for 2-3 hours in bed, go back and rinse a few more. Usually would take a coupe of days to fill up dishwasher, now it takes about 10 minutes in one go! For me, that is HUGE!

 

[kangaSue]

https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/
A Mestinon Miracle: Vagus Nerve Stimulating Drug Helps Long Time ME/CFS Patient Exercise

Also a brief mention for use in POTS in this article;
https://www.healthrising.org/blog/2...omia-international-pots-sfn-mcas-vagus-nerve/
[The Old/New Hope – Pyridostigmine Bromide (Mestinon)
Pyridostigmine bromide (Mestinon) has been around for a long time but it’s often not mentioned as a drug for POTS. Several studies, though, have found that it reduced heart rate. One large study (203 POTS patients) found that about 60% experienced significant improvements in fatigue and heart rates. Mestinon has been a favorite drug of Dr. Systrom’s in both POTS and ME/CFS for quite some time. If I remember correctly, a study assessing its effectiveness either is or will be underway. Check out how Mestinon dramatically helped one long term ME/CFS patient.]

 

[Gingergrrl]

I tried the max dose of 180

Wow, that is such a high dose! I could not tolerate 1/8th of a 60 mg pill which I guess is 7.5 mg! But I could not tolerate much of anything back in 2014 and 2015 and it is possible that I would be able to tolerate it now.

But this is a drug for autoimmune issue like myasthenia gravis

It is also used fairly commonly for POTS now, too.

 

[Rebeccare]

Yeah that is what I hear... What dose were you on, is Mestinon a tablet that can be cut?

I started off at 30mg 3x per day. I stayed on that dose for one month, and then went up to 60 mg 3x per day. After another month I was put on an extended release capsule of 180 mg just once per day. I don't remember whether the tablets could be cut, but I think that they could be (except for the extended release tablet--extended release tablets should never be cut).

I've heard from other people on the forum who suggest tapering onto the medicine at a much slower rate than I did, starting with 15mg once a day, then slowly increasing that to 3x per day, and then slowly increasing the dosage:

This is what I was advised as I am sensitive to meds too
* Start with 1/4 tab (15 mg) once a day
* Increase by 1/4 tab every 7 days as tolerated.
* 1/4 tab two times a day
* 1/2 tab in am and 1/4 tab in pm
* 1/2 tab in am and 1/2 tab in pm
* continue to increase in this fashion up to 60 mg two times a day based on effects/side effects
* Monitor BP and hr

 

[Haso]

I had to stop it prematurely due to the side effects also.

 

[junkcrap50]

There is a herbal "equivalent" to mestinon, called Galantamine. Might be milder and easier to try starting out.

 

[JAH]

Galantamine Hydrobromide is the generic name for the drug Razadyne. It’s used to treat Alzheimer’s disease. It’s also can be used in the same way as mestinon, and has similar side effects.

I’d echo some of the other posters to start slowly with mestinon. If you have a doc you trust, it’s probably worth trying because it might help you. Side effects are diarrhea, twitching and cramping. Can makes some balance issues worse. Just work your dose up slowly and see if it helps. Hoping it does...

 

[MEPatient345]

I am on my second day of trying mestinon. Took one 15mg dose yesterday and this morning. After an hour and a half both times I feel worse.. very woozy, worse tinnitus, headachey and felt the need to remain horizontal for the 3 to 4 hours that it lasts — so basically it brings on PEM for me. My heart rate is the same while laying down before and after taking.
If this is my reaction after such a small dose, is it unlikely to work for me, or should I stick with it for a week to see?

 

[Mel9]

Another warning: I made the mistake of thinking that if 180mg Mestinon a day was good, double that would be twice as good.

This caused severe overdose symptoms: muscle twitching, severe bowel problems and nausea, muscle weakness.

After a few months back on lower dosage (3 of 60mg per day) I was finally back to normal again and enjoying the benefits of the (correct dose) Mestinon.

 

[MEPatient345]

Thanks @Mel9.. when you started taking mestinon, did you have any PEM like symptoms, and did they go away? I am only taking 15mg a day so far..

 

[Avena]

Interesting thread. Do all of you use slow release Mestinon?

 

[Rebeccare]

If this is my reaction after such a small dose, is it unlikely to work for me, or should I stick with it for a week to see?

Usually I say to stick with it and see if your body gets used to it. But this is such a strong reaction, I think it's worthwhile for you to be in touch with your doctor, describe what you're feeling, and get their opinion. Maybe this isn't the right medicine for you. Or maybe you could cut the pills and start on a lower dose.

Do all of you use slow release Mestinon?

Usually people don't use extended release Mestinon until they've been on it for a while. The reason why is they need to begin at a very low dose, a pre-therapeutic level of medication, in order for their body to adjust to it so they don't experience side effects. Most people start 30 mg three times per day, and some start at an even lower dose. Then the dose is very slowly increased over the course of weeks or months. Extended release mestinon is 180 mg, or the equivalent of taking 60 mg three times per day. So once the regular Mestinon is tolerated well at 60 mg three times a day for a while, then a person might switch over to extended release.