I think I have found out why I was so much weaker than normal over the last week or so... I was taking too much mestinon!

I'm not going to go into the long story so I'll just ask the question....
How does everyone else takes their Mestinon?

Do you take it only when you feel weakness coming on?
Do you take it on a set schedule?

I've been taking mestinon for years and started to take more of it on a daily basis since I've had this MG set back. I have always taken it every so many hours whether I felt weak or not but now I'm thinking that I may need to change that method

I take mine every 3 hours like clockwork, and I know when the 3 hours are almost up I can start to feel my body becoming heavy. Every once and awhile when I'm feeling really poorly I count down to the 3 hours (starting at my watch), but I've never taken more than that. Hope you figure out what works for you!
~Kathy

When I took it, I only took it as I felt I needed it. Everyone is different so talk to your Dr. before you change your medication amounts.

Hi Shari,
Mestinon dosage is pretty hard to adjust because overdosage symptoms are the same as those for underdosage…
It is highly advisable to take it on a regular schedule, usually every 4 hours but some people do change it: Scotskat just told you she was taking it every 3 hrs and I take mine every 5 hrs…
You can also vary the dose by taking more than 60 mg at a time but personnally, I would prefer to shorten the cycle.
Because of this difficulty, you have to find out by yourself what is your best schedule, for example, if you forgot one intake and you feel fine, you may try to lengthen the cycle (or cut the dose). Shorten the cycle is more difficult except when there is a good external reason: extra physical work to be done, for ex. and you may need several trials, up and down to find out.
Also, always talk to your neuro about your modifications…
Good luck!
Maurice.

Thanks everyone. I at one point was taking it every 6 hours. Then I had the flare up and my neuro told me to take it every 4 hours if I needed it which has been too much for me lately. I guess I'll try every 5 hours and see how that goes. Too much of it is not a good feeling at all!!!

Shari, It's always best to talk to your neuro before making any med changes.

I am on 90 - 100 mg. every 3 hours, round the clock. When I go out and do things, my neuro has approved me to have an extra 10 because of how worse I get. I can't take the other MG drugs for various reasons so I have to rely on Mestinon and rest.

Everyone's situation is different. Sometimes neuros increase the time between doses, increase the actual mgs. or both.

Like others, I can always tell when Mestinon is running out. It kicks in about 20 minutes after taking it (I'm on the syrup and it tends to kick in faster) and wears off about 30 minutes before the 3 hour mark. Don't even have to see a clock to know what stage I'm in!

If you get weaker off of it, that's an obvious sign that you need to take it more often. If not and you get worse on a dose, you may need to back off the dose amount. That's why it's so important to really notice how you feel and when and to tell your neuro about it all. Then they can adjust things accordingly.

I hope you can get it all balanced out.

Annie

i take 90 mg. every 4 hours, religiously. 6, 10 and 2. yes that means 2 a.m.. it wears completely off in 5 hours. one 60 mg pill does not usually completely control my symptoms. i tolerate it fairly well. occaisional g.i. complications but i've learned to deal with that. i consider it an equitable trade-off. seems to work best if kept at a constant level and it takes a half hour to a full hour to kick in if i let it wear off. i carry a full day's dosage with me in my work truck.

Hey hon! For ME t depends on the day - there are days when I take 8 - yes 8 - and then there are days when I take only 2! It all depends on how I FEEL! At this point, I'm pretty much much given discretion when it comes to my Mestinon, as well as my pred - there are days when 40 just won't do it for me, then I take 60......sooooo much better!

I LOVED the liquid mestinon! It kicked in quicker and felt awesome!

My scrip says 5 - 60 mgs tabs + the "big boy" 180 mgs @ night......

Today I only took 3 60 mgs, but I did take 60 mgs of pred - can you say I'm going to be up all night? Nevermind, I don;t have anywhere to go tomorrow.....my pastor has a web cam so I can watch the sermon!

Hope this helps!
Love,
Erin