Wow,you guys and gals are educating me on Mestinon. Somewhere I got the idea that about 360mg per day was maximum. Good to know for future.
Thanks FREDH

I find dosages will vary depending on your activities and stress level...even a bad night sleep or I will notice it if I can't eat a proper meal caused by my swallowing condition... I find it very hard to moderate I just started taking TIMESPAN at bedtime and seems to be helping me get going in the morning hours...I've only been on meds since April of this year, I'm also on Predisone, Imuran 200mg/day and Mestinon 360 to 600mg/day and 1 Plex per week and still have issues with facial and speech issues.

Hi Snoel,
Does your Nuro let you set the dosage, or do you just judge by how you feel?
Thanks --FREDH

I'm on timespan, 180 mg in the morning, and another 180 mg in the evening. I find that the literature on daytime timespan is pretty accurate: it fluctuates a LOT during the day. Sometimes I'll feel fully medicated, and then be unable to walk for a half hour, and then be right back to nearly full strength.

That said, I seemed to be fairly weird with the instant Mestinon. It would take over an hour for me to start feeling anything, get only an hour or two of results, and then have to wait awhile to take my next dose. And since it would make me so sick to take it without a full meal, I really couldn't take it as often as I needed to. That's why I got put on the Timespan.

Overall, I spend more of my day medicated while on the Timespan than the instant, but it's a lot less predictable.

Does anybody else notice strange sleep issues with the Mestinon?

Hi FREDH

Yes he gave me the green light to vary as I wish/feel...a quick update I've made the decision to go for RITUXAN!!! I've had my 1st of 2 infusions this past April 26th with GREAT success so far and already starting to see some improvement with my symptoms, what made me go for RITUXAN is that my red blood cells and iron have dropped to a level of being anemic!!! I'm having my 2nd May 10th and really looking forward to it! By what I've been reading on RITUXAN most have gone to REMISSION and sure hope I can too or at least be able to cut back on meds especially the Pred's and Imuran...:)