How long does Mestinon take to work?

C

Castorp

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I have been taking Mestinon during the last three weeks (120 mg/day) with no effect on my symptoms. In view of this, my doctor (who is not familiarized with MECFS or POTS) thinks that I should give up on the treatment. However, I am not sure and I wonder if only three weeks is enough time to see a response to Mestinon.

I would be very grateful if you could share your experience with this medication.
 
C

Castorp

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Spain
No, I gave mestinon up several weeks ago, as I did not notice any effect (positive or negative). How long does it take to work for you?
 
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Jyoti

Jyoti

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I had some good results without noticeable side-effects up to about 75 mg per day. I started at 7.5 mg/day and slowly titrated up. At 75 mg I had more physical and mental energy which was just lovely. So lovely, in fact, that I ended up going beyond what I should have on a regular basis. But I could learn to manage that, I think. At 90 mg I started to have side effects I did not like. Some muscle twitching, prickly skin--both of which were not too bad. But I had air hunger that became alarming. This is not a symptom I have--in general, and it stopped as soon as I stopped taking the Mestinon.

I understand anecdotally that it takes at least a couple of months to see results. That was not the case for me, but if you are not having side effects, I would consider giving it three months at least. Right now, I am trialing Huperzine A, hoping to get some of the same good effects without the bad.
 
Jyoti

Jyoti

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When I think about it, @wabi-sabi, I did not take that long. But I felt pretty cautious having failed at so many meds. I think it took me about 6 weeks to get up to 75 mg/day. I went up to 15 (a quarter pill) and after that, by quarters to 30, 45, 60 and then 75. I believe I increased the dosage once a week. It only took three days to realize that 90, my next step up, was too high.
 
wabi-sabi

wabi-sabi

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Right now I am taking 7.5mg every other day and am feeling more energetic. I can sleep better at night too. Of course, I am getting bad muscle spasms as well. On the up side, I am able to think much better. Hoping I can balance out the positive and negative effects!
 
Jyoti

Jyoti

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Good luck @wabi-sabi. It IS encouraging that you have those same benefits I experienced. The bad muscle spasms though..... not so great. Maybe you are at your maximum dose?
 
Jyoti

Jyoti

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I have heard of people who stuck it out and the side effects abated. Maybe yours will too if you go slow enough.
 
JES

JES

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Just curious, why would it take a couple of months to see results? Mestinon inhibits the enzyme asethylcholinesterase, that's pretty much all it does. It does not reach the brain and has a relatively short half-life of 3-4 hours. I don't see why it would take several months to notice the effect unless we are talking about some hypothetical long-term adaptations of the body from increased acethylcholine activity. I noticed an effect pretty much on day one with it lowering my heart rate and decreasing sympathetic nervous system overactivity. It did nothing to fix my core symptoms though.
 
wabi-sabi

wabi-sabi

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JES said:
I don't see why it would take several months to notice the effect
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I don't know either, but there is an article on healthrising about it here: https://www.healthrising.org/blog/2...ted that,with breathing found during exercise.

Also, even when I am taking only one dose a day, I feel better for the whole day. Given the short effect on the enzyme you mentioned, I have no idea why this is. It's sort of fascinating to me and I guess points out how complicated a disease this is. But I will happily take feeling even a little bit better.

JES said:
decreasing sympathetic nervous system overactivity
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I think it is doing this for me too! At least, that's my best guess for why it helps me sleep better at night. And when I sleep better, everything is better. But that shows the weird timing thing again. I take it in the morning and there's still enough in me to help me sleep at night. No idea why, but I'll take it. I just need to balance this against the muscle spasm and pain and that keeping me awake. Sigh...
 
Pendergast

Pendergast

Spain
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Castorp said:
I have been taking Mestinon during the last three weeks (120 mg/day) with no effect on my symptoms.
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Exactly the same here. I started with 30mg/day and after +one month with 120mg/day without clear benefit (nor negative effect) I'm thinking of giving up and try Abilify next.

Maybe it has some "PEM preventive" effect as Systrom's study indicated so it could make sense to take 60mg only when exerting?
 
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