I take 90mg 4 - 5 times a day, that depends on when I get up and go to bed. I get more sleep in the summer, so usually only 4 doses.

I tried 120 mg at a time for about a week. That was way too much, my muscles were twitching like crazy.

I take anywhere between 60mg every four hours to 120mg every four hours I vary the dose according to how I feel. But Often if I take 60mg I will get up and try and do something and find that its not enough, even after leaving it an hour.

Sometimes on 120mg I find Im still shuffling so I find it very frustrating as Im caught in a vicious circle until they finally admit I have MG and put me back on steroids.

I have once when I was really really really bad taken 180mg in one hit. I had no side effects, but I wouldn't recommend that to anyone. I did it as I was so frustrated at not being able to move or get out of bed.

Take care
Rach

I take 3 x 60 mg...so 180 mg. every 3 hours. So depending how long I'm up during the day - it can be between 6-7 doses totalling 1260 mg....PLUS another one - sometimes two timespan at night. (1620 mg. total intake). Stomach issues - oh yeah. The price to be paid for being able to try to function. Oh yes - also on Cellcept and IVIG.

Lydia

I take 3-4 doses of 60 mgs every 4-6 hours. At one point, I was take 6-doses of 60 mgs every 3-4 hours. That was too much! I think it was making my breathing worse.

I also have plasma exchanges every other month or so...

I also drink a lot of caffeine...Pepsi, coffee, tea...Works like medicine, especially in this heat...People always ask my why I'm drinking pepsi at 9am...I'm like, because it's scrumptrulescent! My teeth disagree, though.

Wow thank you everyone so much for replying. It really helps to know what everyone else takes. I cant believe so many of you take such high doses when my doc says no more than 240mgs a day. Well actually he kinda worded as, if you need more than that you need to let me know and we need to do something more to help.
I did that once and that's when they put me on Imuran. Started that today. I am nervous, I hate starting new drugs. I am allergic to tons of them.
But I took 90mgs earlier as I am very weak today OMG I was so spasmy and crampy it was crazy. And then I felt like I was gonna throw up I was spasming so much. And then all the other good stuff too, sweating, diarrhea, etc.
I have taken the time release before and I almost feel like it's worse than the other. I don't know I am just weird I guess. Well again thanks everyone. I hope everyone makes it through the heat. Hot here too!

i felt much much better on tr mest dr wants me to imuran but will wait till summer is over don't want to screw up all the good stuff

Just another view, but I am on 240mg of mestinon a day and also Cellcept. I have IVIG every 4 weeks also. I was on Immuran to begin with, but had serious side effects......not to scare you.....as we are all different...but had to get off of it and went to Cellcept...which is doing better. Hope you don't have an effects and things get better for you!

my ? is -do you get used to the dose of med you're on and then feel worse as it wears off? if you never took them would you not feel as bad?do you need to increase as your body adapts to meds vs getting worse disease wise? i know there is probably no answer to this question but it does puzzle me at times!!

that's my ? too. One day I took 1/4 of my dose all day and felt ok - but weak. The next day I went back on reg dosage and felt fabulous! Coincidence or do you really adapt to Mestinon. A question for my neuro next week. Will let you know what the answer is.

Sue

Hello all! I now take 40 mgs of pred and 480 of mestinon - sometimes more/sometimes less depending on how I feel! Here in the hosp they give it to me every 4 hours - not the way I do it at home, so I'm going to talk to my dr and make sure I get it when I need it, not when THEY say!

That being said, I am so thankful to be here, b/c everyone is so nice, but cannot wait to get HOME to my family and dogs!

2morrow is the big day - depending on what my neuro says!

Hope this finds you all strong and happy!

Big hugs!
Erin