Mestinon Trial Dose?

[Jennij]

My doctor prescribed Mestinon at 60mg 3 times per day. What have others started with?

[flyingsquirrel]

I started at 30 mg 3x day with instructions to increase by 30 mg every three days (up to 120 4x day) as needed.

The higher does don't work any better for me than the 30mg TID, so that's what I still take.

I had a TON of side effects for the first few weeks, but they leveled off after a few weeks. Good luck.

[Kellysavedbygrace]

I started on this at 60mg 1x per day in March. My Neuro titrated me up slowly. Now I am at 3x per day. One of the few drugs I'm on that I can tolerate w/o side effects.

[hholmes13]

My doctor had me start with half of a 60mg pill 2x/day for a week. Then I added one additional half pill each day for a week until I got up to 60mg 2x/day. I was allowed to increase up to 3x/day but didn't get that far. I started to feel small time periods of relief (i.e. 30min - 1hr) around 3-4 weeks in, but it wasn't until I hit the 6 week mark that I really started to feel good. I was going to increase to 3 doses/day if I wasn't feeling better or if I felt awful at night but so far so good. I like to take the lowest amount of meds possible to avoid side effects. I've been working again and actually running/exercising too. It has really helped to stabilize my heart rate and my horrible nausea and dizziness are hardly there anymore. I was psyched it helped with tachycardia because my neurologist had me go off my beta blocker for this med. My hr was routinely 140-150 just standing in my kitchen in the mornings without the beta until this stuff kicked in. I've also got way more energy. For the first time since April of 2011, I actually kind of feel like my old self! I'm just hoping it continues.

I have been very fortunate in that I had very few side effects from this drug. I mostly got tons of muscle spasms that would occur all over my body throughout the day. It was annoying but way better than the GI side effects I expected to experience. They're pretty much gone now. I had a little bit of muscle weakness in my legs for the first week or so too. Also, I did wake up during the night once because my left leg was shaking so badly it felt like it was vibrating all the way down to my bones...super weird but it only happened once. I have such a touchy stomach and had lost 20 lbs in a year due to nausea from POTS/OI, so I totally expected to be super sick from this drug. However, it really helped me get my appetite back and made me stop feeling so full/bloated after eating. Mestinon has been amazing for me and has helped me regain my life back...I hope it helps you out too!! Good luck!!

[Guest Alex]

I take 45/30/15 mg at 8AM, 12PM and 4PM.For the 1st month or so I had some digestive issues, a bit of blurred vision with the AM dose, some sweating and a bit of a runny nose. Every now and then I still get the blurred vision as well as minor muscle twitches all over my body and esophageal spasms. None of the side effects I am dealing with are long lasting and I tolerate the med quite well I'd say. I'm inclined to think that of all the meds I am on this is what helps me the most.

Alex

[peregrine]

I take 60mg 3x daily - started at 30mg 3x daily for 3 weeks, then up to 60mg. On the new neurologist's suggestion, I upped it to 90mg 3x daily (result - no increase in beneficial effect, maybe increased spaciness?) and then 120mg 3x/day (at which point I stopped being able to speak). Now back to 60mg. I'm not as clear-cut on its effects as I'd like to be - it does seem to alleviate fatigue somewhat - but other than the dose-dependent speech issues I have no side effects, so... *shrug*

[Jennij]

Very helpful. Thanks for the input:)

[Kyler]

We started 30 in the am and 30 in the pm and it was too much - sent us to the hospital due to severe chest pain, muscle spasms, and low BP and low HR. It really just dropped his HR too much for him - he also takes a beta blocker with it. We waited a year and when his symptms increased we tried it again at 15 and 7.5 and that is a magic number for him despite being 6'3 and 243 lbs. It really helped with his constipation and nausea.