Starting Mestinon treatment first week in January - any advice?

[RUkiddingME]

How do you convince your doctor to prescribe Mestinon for ME/CFS? I can’t imagine my doctor would be on board;(

 

[Betty42]

How do you convince your doctor to prescribe Mestinon for ME/CFS? I can’t imagine my doctor would be on board;(

I just explained how al my symptoms match the symptoms of low levels of acetylcholine. I also told my doctor that with my low quality of life I don’t have anything to lose. My doctor agreed.


I started with very small doses (5 mg x 2 daily) and increased very slow. I’m now on 4 x 10 mg and are still tolerating Mestinone I expect I have to increase the dosage to 4 x 30 mg before I see any big changes in my health (this will take me weeks / months).


My doctor observed me the first 2 hours after I took the first pill and he had an antidote ready in case of any reaction (the antidote was atropin). I don’t think this was necessary but I have reacted to different drugs so my doctor is extremely careful

 

[RUkiddingME]

Thank you so much for that info! I hope you have a huge improvement on it!

 

[MartinK]

Hi there!
Im 3rd week on Mestinon, 20 mg 3x day now. Please, anyone know, when should the first effect appear? if I understand correctly, mestinon must be used for some time for improvement to occur, is it true?

I'm just thinking about not taking it unnecessarily long if it doesn't work

Thanks! Martin

 

[Rebeccare]

Im 3rd week on Mestinon, 20 mg 3x day now. Please, anyone know, when should the first effect appear? if I understand correctly, mestinon must be used for some time for improvement to occur, is it true?

That's still a low dose. I was told not to expect any effect until got up to taking 60 mg 3x per day. But as you've seen on this thread, people start at a low dose to give their bodies time to adjust and avoid unpleasant side effects.

 

[*GG*]

I took the Max dose to only get Bels Palsy, but was then prescribed steroids and all is fine now

GG

 

[LauraB]

I just explained how al my symptoms match the symptoms of low levels of acetylcholine. I also told my doctor that with my low quality of life I don’t have anything to lose. My doctor agreed.


I started with very small doses (5 mg x 2 daily) and increased very slow. I’m now on 4 x 10 mg and are still tolerating Mestinone I expect I have to increase the dosage to 4 x 30 mg before I see any big changes in my health (this will take me weeks / months).


My doctor observed me the first 2 hours after I took the first pill and he had an antidote ready in case of any reaction (the antidote was atropin). I don’t think this was necessary but I have reacted to different drugs so my doctor is extremely careful

what kind of reactions was he looking for?

 

[LauraB]

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.

I'm not tolerating Mestinon very well, was wondering what was the other medicine your Doc put you on?

 

[Rebeccare]

I'm not tolerating Mestinon very well, was wondering what was the other medicine your Doc put you on?

I was put on Midodrine, which I tolerated much better. My doctor also sometimes prescribes Florinef to people who don't tolerate Mestinon well.