Hi,

Are you saying you are taking 60 mg of mestinon every 8 hours? If so, that is likely not enough. I think most dose every 3-4 hours. I suggest you run that by your doctor.

MG is just tough. I think it's very important to try everything you can to get improvements, but sometimes meds and procedures just don't work very well, no matter what. You sound fairly unstable right now, so if you can work closely with your doctor in the next weeks, perhaps you can get some relief. Does your doctor email with his/her patients?

Keep fighting! You never know when a treatment will work or when your body will decide to improve spontaneously. Always be open to new ideas!

Hi, I was taking mestinon every 3-4 hours. The doctors told me that was too much so they supposenly gave me 8 hour pills. But I didn't think they had 8 hour pyridostigmine. I'm on 60 Mg prednisone daily. A iron pill because being in the hospital a month can do that to you.hospital/woo much blood taken Aniema. Plasma did help though cuz mine is vary Bulbar/swallowing/talking. I can eat and swallow though my speech is on and off still. Swallowing was weak when I had my xray/swallowing test but its going down right. Again like we all know some days are better than others. Falling is vary Scary because I have stairs and then another stair into my home. always that last step into the home. But its like ahhh I haven't done that sińce I wasn't on mestinon. Before I was diagnosed. I have been under a lot of stress so that could be part of my problem.

Thanks
Lisa

To the best of my knowledge, there is no such thing as 8 hour mestinon. There is Timespan, which is 180 mgs, which some use at night.

Sorry you're having such a tough time. Maybe a chat with your doctor or even pharmacist (about the mestinon) would help.

Yes def. Going to talk to my pharmacists about that. Had my 6th plasmapheresis today along with installation of my temp catheter. Lol...going to start azthioprin tomorrow. Still afraid of them but I need them and my doctor is one of the top in mass. He specializes in Mg. Dr Russell if anyone knows him.

I don't think I could make it if I went 8 hours without my mestinon. After 4 hours I start to go way down hill.

Hang in there.

Azathioprine does work because I've been on it for about 2 years now @ 150 Mg a day.
Recently I did not rly listen to my doctors and stopped taking azathioprine for a while. I am now back to a very weak state( a little above crisis).

So now, like you I'm back on azathioprine building it back up in my system. This started Feb 2013. I expect to see results within 4 months. Although from the past, it took 6 months to kick into my system. I am also on prednisone.

I wish for you the best results asap!

I started azathioprin yesterday. My left foot is swollen. Has anyone else had swollen sometimes tingly feet starting aza?

I would suspect the foot issue is plasmapharesis related. You might want to run that by your doc's office.