Poll: Mestinon Trial

[mattie]

A bit late, but I promised to report about Mestinon Trial (@echobravo)
My new GP takes M.E. seriously.

Not only that, he allows me to trial Mestinon without going through a specialist which would be the normal route for this kind of off-label medication use.

It works well for a subgroup of POTS patients and also PWME have reported benefits.

https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/

Prescribed dosage varies a lot, from 10mg to 180 mg or even more.

I will start low. So today: 5mg
No noticeable effects so far.

I will update this thread and report of benefits vs side effects as I keep increasing the dosage.
I wanted to keep the poll options limited (simple). But let me know if you want me to add options.

 

[mattie]

Day 2: 10 mg (2x5)
No noticeable effects good or bad.
No change in upright tachycardia.

Day 4: now on 3x10mg
tachycardia has decreased a bit.
No side effects.

Will switch to weekly update or in case of significant effects.

 

[mattie]

Now on 3x20mg daily.
POTS definitely improved, standing tachycardia reduced with 20-30bpm (!)
Also more energy during the day.
Body / Brain feels calmer. Parasympathetic nervous system kicking in I guess.
Side effects: none so far.

 

[EMilo]

I just started at about 7mg. It feels like I was hit by an acid freight train. Not a fun one. It's scary.

 

[mattie]

wow thats not a nice start.
With so strong a reaction to such a small dose I would consult my prescriber.
This med clearly will not work for everybody and PWME can be very sensitive to medication. I know I am.

Due to heavy flu I am not upping my dose for now. Impossible to measure effects right now.

 

[Eve18]

Are you taking any other medications for POTS like beta blockers or fludrocortisone?

 

[mattie]

Are you taking any other medications for POTS like beta blockers or fludrocortisone?

I've tried clonidine and fludrocortisone. Could not tolerate either one.
I have been on propranolol 2x10mg dd. It helps a little bit with standing tachycardia but not much.
Mestinon for me is clearly more effective not only in lowering standing tachycardia but also with the things I've stated earlier.

 

[mattie]

Update:
Took me a while to recover from a serious flu.

As for the Mestinon: I was not able to build up to more than 60mg a day.
At 60mg a day I regularly experienced bradycardia. (<50 bpm).

Tried different dosages below that 60mg and setlled for 2x10mg a day.

It still helps with lowering standing tachycardia; for me it works better than propranolol.
It also gives a bit more energy but in no way does it prevent or lessen PEM for me.

So all in all no spectacular results,
I will sitick with 20mg a day for now...

 

[Marylib]

I have only been on mestinon for a week, but am very happy with it. My mind is more clear, less fatigue in general, my dry eyes are much better, and no constipation. Only side effect for me is frequent urination, but POTS is doing well with IV saline and ivabradine. Am on 30mg. three times a day. I feel very fortunate and hope this lasts!

I am not increasing activity or "exercise" at all - I have learned my lesson about this many times over.

 

[RYO]

I am starting trial of mestinon 30 mg next week. I am hoping it helps...

 

[Dechi]

I asked my doctor if he would prescribe it but he said it was a very serious drug to take and wouldn’t do it.

As I am declining though I might try again eventually.

 

[RYO]

I titrated to pyridostigmine 30 mg three times daily over a week. It definitely seems to be helping but I will until 4 weeks to fully assess its effects. So far, I've experienced some GI side effects but not severe enough to stop medication.

 

[Eve18]

I have only been on mestinon for a week, but am very happy with it. My mind is more clear, less fatigue in general, my dry eyes are much better, and no constipation. Only side effect for me is frequent urination, but POTS is doing well with IV saline and ivabradine. Am on 30mg. three times a day. I feel very fortunate and hope this lasts!

I am not increasing activity or "exercise" at all - I have learned my lesson about this many times over.

I titrated to pyridostigmine 30 mg three times daily over a week. It definitely seems to be helping but I will until 4 weeks to fully assess its effects. So far, I've experienced some GI side effects but not severe enough to stop medication.

How are you doing? Positive effects?

 

[RYO]

@Eve18
It seems to be helping. I tried to increase dose to 45 mg 3 x daily but I had to go back to 30 mg. In general, I think pyridostigmine has the possibility of addressing one aspect of this illness. I believe an immunomodulator is also necessary. IVIG may be one option but hopefully additional drugs will be investigated and prove to be effective. Lastly, the new drug Cortene may one day be a part of multi drug treatment plan for ME/CFS.

 

[Eve18]

@Eve18
It seems to be helping. I tried to increase dose to 45 mg 3 x daily but I had to go back to 30 mg. In general, I think pyridostigmine has the possibility of addressing one aspect of this illness. I believe an immunomodulator is also necessary. IVIG may be one option but hopefully additional drugs will be investigated and prove to be effective. Lastly, the new drug Cortene may one day be a part of multi drug treatment plan for ME/CFS.

It’s so hard to get IVIG prescribed and approved.

I’m glad to hear that Mestinon is helping.

 

[Learner1]

I've been on 10mg pyridostigmine plus 10mg propranolol 3x daily for several months. They have helped me to stand up better, not be dizzy, and slowed my racing heart and BP.

 

[RYO]

It’s so hard to get IVIG prescribed and approved.

I’m glad to hear that Mestinon is helping.

I totally agree. I am currently trying 12 day course of prednisone. It's not a long term treatment strategy but it does help with chronic neuropathic pain. I have been reluctant to use steroids in the past but my impression is that research so far may suggest autoimmune etiology vs chronic indolent viral infection.

Usually my eyes get puffy and it feels like I have lid lag. My family members have noticed my face looks more normal since starting pyridostigmine. I still get PEM but it seems to be less severe. I am hoping to maintain the mild improvements.

(Prednisone interacts with pyridostigmine - makes it less effective if taking higher doses of prednisone)

However, there may be drugs currently being used for autoimmune diseases that may be helpful for ME/CFS.

 

[Eve18]

I've been on 10mg pyridostigmine plus 10mg propranolol 3x daily for several months. They have helped me to stand up better, not be dizzy, and slowed my racing heart and BP.

Do you mean 10 mg pyridostigmine per day or also 3x daily?
Do you see only improvement in POTS/OI or also with other symptoms?
Thanks.

 

[Learner1]

The pyridostigmine is 3x daily as well, taken at the same time as propranolol. It helps the POTS/OI symptoms, dizziness, and exercise and heat intolerance.

 

[Eve18]

The pyridostigmine is 3x daily as well, taken at the same time as propranolol. It helps the POTS/OI symptoms, dizziness, and exercise and heat intolerance.

I’m glad that it helps you. Great to know that it also helps wit exercise and heat intolerance.

I’ve just got scripts for both. Right now I’m on different beta blocker. However I was prescribed 60 mg pyridostigmine 3x daily. Thanks to all comments I will start with much lower dose.