Starting Mestinon treatment first week in January - any advice?

[Betty42]

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]

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

 

[Belbyr]

Half life is very short, if it doesn't jive with you... it's over in about 4-5 hours.

 

[Diwi9]

Be aware that nausea can be a side effect.

 

[Betty42]

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…………………?

 

[Betty42]

Half life is very short, if it doesn't jive with you... it's over in about 4-5 hours.

The doctor will give me antidote if needed . Hope I won't need it

 

[Betty42]

Be aware that nausea can be a side effect.

I can live with that! 'm very sick at the moment, so nausea is "nothing" at the moment!

 

[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…………………?

That's right. Proceed as tolerated.

 

[Rebeccare]

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.

 

[Rebeccare]

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.

 

[Betty42]

Thank you @RebeccaRe

I will try to hold back if Mestinon works for me

 

[Mel9]

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.

 

[Betty42]

Hello @Mel9

Are you taking your dose 2 or 3 times a day?

 

[Betty42]

Hello @wigglethemouse

Are you taking your dose 2 or 3 times a day? Or is the plan to increase to 3 times a day after a while?

 

[wigglethemouse]

Are you taking your dose 2 or 3 times a day? Or is the plan to increase to 3 times a day after a while?

I'm like you, thinking of starting in January. I don't know the answer to that. You can look at some prescription drug websites such as this that quotes

spaced to provide maximum relief

https://www.rxlist.com/mestinon-drug.htm

 

[Mel9]

I space mine four hours apart but there are probably individual differences

 

[Betty42]

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]

No change in resting HR but a big decrease in pots type HR after standing. (Ie the POTS seems to have disappeared)

 

[Betty42]

I'm happy for you @Mel9 I guess you have a new life now

 

[Mel9]

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?