[Poetist]

On average, I'm one of those people who can play sports, but pay the price with hours of sleep to follow. On rare occasions, I unexpectedly have these extreme episodes of weakness, but my most consistent MG problems have been breathing and relative weakness.

However, this past Saturday, I discovered something. One day, I accidentally took 120 mg dosage of Mestinon instead of 60mg. I played tennis, and I was not tired. I'm too scared to do that again, unless I know someone who has done that as a method. Since, last time I took too much Mestinon (by doctor's orders), I literally could not lift a muscle for hours, had to go to the ER.

So, I would like to know if anyone doubled up on Mestinon and had some success.

[Jenn220]

Originally Posted by Poetist

On average, I'm one of those people who can play sports, but pay the price with hours of sleep to follow. On rare occasions, I unexpectedly have these extreme episodes of weakness, but my most consistent MG problems have been breathing and relative weakness.

However, this past Saturday, I discovered something. One day, I accidentally took 120 mg dosage of Mestinon instead of 60mg. I played tennis, and I was not tired. I'm too scared to do that again, unless I know someone who has done that as a method. Since, last time I took too much Mestinon (by doctor's orders), I literally could not lift a muscle for hours, had to go to the ER.

So, I would like to know if anyone doubled up on Mestinon and had some success.

First, talk to your doctor before making any changes to your drugs - but, increasing your Mestinon dose is something you may need to discuss.

Second, yep, I take 120mg of Mestinon on a regular basis. I was taking 120mg every 4 hours, with the Timespan at night, but as we've gotten the Myasthenia under control with Prednisone and Imuran (and IVIg during the first year of diagnosis when I was really weak), we've reduced the Mestinon down to 90mg 3 times a day, sometime 4 times a day depending on how I'm feeling, with the Timespan at night. I'm not sure what you would consider "success" with taking 120mg, but I do work full time, volunteer, hang out with friends, run on a semi-regular basis, and am fairly active, without getting too tired and needing to take a day (or 3) to recover.

But, like I said, it's something for you to discuss with your doctor, and remember not everyone responds the same way.

[AnnieB3]

I don't know of any neuro who would recommend that. It's highly dangerous. Adding 30 mg. to your regular dose when you have an activity maybe but you have to get any direction for doing that from your prescribing doctor. To not do so puts BOTH of you at risk. Doctors do indeed take a big risk by prescribing medications and it's a matter of respect and common sense to stick to what they say. You can always get some kind of plan from them, like taking an extra this or that when doing activities or out in hot weather.

If you are only taking 30 mg., doubling up "may" be okay but still not without an okay from your doc.

The risk of a cholinergic crisis, from too much Mestinon, is a very big risk. I have never "doubled up" and would never. Just my opinion.

Annie

[suev]

Annie's right. Long discussion with my doc re: my dosages and activity. I was given a max amount that can be taken in a 4 hour period - - along with guidelines about how to approach the dosing before activity (ie. in my case golf in hot weather).

But I was also advised about what to look for and warned that exceeding the '4 hour max amount' could result in a cholinergic crisis...or even a heart attack!

That got my attention Talk to your doc!

[Poetist]

But I was also advised about what to look for and warned that exceeding the '4 hour max amount' could result in a cholinergic crisis.

Yes, I had the cholinergic crisis due to the doctor increasing my dosage too soon, and that was what sent me to the ER. That gave me the muscle paralysis.

I did tell my doctor -- on few occasions -- I gave myself 30mg about three or more hours after my dosage, during stressful days, because I felt so weak. He didn't seem to object.

Anyway, I appreciate everyone's stern warning and consider myself lucky that I didn't send myself back to the ER.

[Jenn220]

Originally Posted by Poetist

I did tell my doctor -- on few occasions -- I gave myself 30mg about three or more hours after my dosage, during stressful days, because I felt so weak. He didn't seem to object.

Poetist, how much Mestinon are you taking if you are taking an additional dose of 30mg 3 or more hours after your scheduled dose? Mestinon generally loses its effectiveness in 3 to 6 hours, so seems to me that your "additional" dose of 30mg should be your next regular dose. (Forgive me if I've interpreted your comment incorrectly and the 30mg is not an additional dose.)

To clarify my initial comment, absolutely discuss any changes with your doctor, and simply "doubling" your dose is dangerous. To the extent you are asking if it's ok to take 120mg at a time, eh - if you need it, maybe yes. But you should be very careful getting to that dose - I was in the hospital when I ended up on that, and we got there by starting at lower dosing schedules (which were insufficient for me and I kept crashing) and working up to 120mg every 4 hours. It is a fairly high dose of Mestinon - generally from everything I've read and heard the recommendation is to not exceed 360mg spread over a 24 hour period. But it works - for me, and I got to that dose with my neurologist's approval and guidance. You and your doctor have to figure out what works for you.