Starting Mestinon treatment first week in January - any advice?

Messages
35
I'm starting Mestinon treatment in a couple of days. I'm very sensitive to medication and would like some advice concerning starting dosage from other members with experience form Mestinon. My doctor don't have any experience with this treatment, so any advice would be highly appreciated :)
 

wigglethemouse

Senior Member
Messages
776
I'm thinking of giving it a go too. 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
 
Messages
35
I'm thinking of giving it a go too. 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

Thanks @wigglethemouse

Just to be clear :
You mean to take 15 mg once a day for 7 days, and then increase to 15 mg x 2 times daily for 7 days, and then increase to 30 mg morning and 15 mg in the evening and so on…………………?
 

Rebeccare

Moose Enthusiast
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9,073
Location
Massachusetts
I think it's a good idea to start on a low dose, stay on that does for a while, then slowly increase the dose, wait another while, and then repeat. Sometimes I didn't experience common side effects on increasing the dose (nausea, aches), and sometimes I did. Those side effects went away after a few days to a week, so stick with it if you can.

I actually started on a somewhat higher dose--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.

In the end I had unpleasant side effects from Mestinon that weren't listed: chills, breathlessness, and constipation. These made me miserable enough that I stopped taking the pills and was put on something else. I wonder if I might have tolerated the medicine better if I had started off slower as @wigglethemouse suggested. But even though I had to stop I'm glad I at least tried it.

One big tip: I kept my bottle of pills on a post-it note with little boxes for AM, noon, and PM, and I checked off the boxes as I took each pill. That way, I could easily see whether or not I had taken my pill (I'm pretty forgetful), so that helped me keep on track with the routine. I also put daily alarms on my phone to remind me to take the pills.
 
Last edited:

Rebeccare

Moose Enthusiast
Messages
9,073
Location
Massachusetts
Oh, I almost forgot to add: you'll be on such a low dose at first that you shouldn't notice much of a difference in your energy level.

If you do start to feel better as the dosage slowly increases, don't increase your activity level too much. Sometimes when people start to feel better, they go a little crazy, overdo it, and then crash.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
Thanks @wigglethemouse

Just to be clear :
You mean to take 15 mg once a day for 7 days, and then increase to 15 mg x 2 times daily for 7 days, and then increase to 30 mg morning and 15 mg in the evening and so on…………………?

Yes, start off very slowly
Oh, I almost forgot to add: you'll be on such a low dose at first that you shouldn't notice much of a difference in your energy level.

If you do start to feel better as the dosage slowly increases, don't increase your activity level too much. Sometimes when people start to feel better, they go a little crazy, overdo it, and then crash.



Yes: My main advice is to be very careful not do too much physical activity while you are feeling good.
 
Messages
35
I had my first two small doses today. First a 5 mg dose at 10 am and a new dose at 13 pm (gave me an effective dose of 7-8 mg at 14.30 pm as a result of the half-life of the first pill).


I had no side effects

Me feet (especially my toes) changed color from blue to a more normal skin color (my toes changed to light red). I felt calmer, almost like the “sympathetic storm” went from a storm to light breeze. After a couple of hour “the storm” and my blue feet was back

Tomorrow I will start on 10 mg and probably take 5 mg later in the day.

I haven’t seen any changes in my pulse.

A question to you on this forum who is using Mestinon:
  • When did you notice any changes in your pulse (What dose were you on)?
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
No change in resting HR but a big decrease in pots type HR after standing. (Ie the POTS seems to have disappeared)
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
Yes I do have a new life!

but still need to be careful not to do too much because I still get PEM (but much milder than in the past).

When I take 30mg mestinon every four hours, I can now do things out of bed for four or five hours, as long as I pace carefully.

I did three hours of light gardening this morning.

I can now sit with my feet down for one or two hours without the awful POTS symptoms (painful legs, feet and brain pressure).

Wouldn’t it be good if many people with ME actually had a form of myasthenia gravis, caused by long term infection, easily treated with mestinon?
 
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