13-18 a day? I wouldn't have enough on hand.how is your Rex written?? I need that kinda access. My doc has me on 4x per day an some days it's not near enough...

Wow so I think I will ask for more mestinon then. Do you take prednisone or ivig also?

I can't take prednisone - bad reaction. I had IVIG once but had aseptic meningitis (diagnosed with lumbar puncture) and now 2 neurologists says that based on those results, I am no longer a candidate. I take 200 mg Imuran daily. Dr tried to increase to 250 but I had severe anemia. I take 180 mg of mestinon in the morning and follow with 150 to 180 every 3 hours (sometimes more often). I see Dr Weiss in St Petersburg - previous Neuro was afraid to do anything but I was in bad shape. This works for me but like most here, I was afraid of taking too much. It's been almost a year at this dosage and the Dr is right. I was diagnosed over 30 years ago. I know when I have too much and my Dr understands how experienced I am with this. I can increase or decrease as needed. Don't suffer - talk to your Dr about your dosage.

Jennie, I guess Dr. Weiss has changed his mind about an upper dose of Mestinon then. I saw him for years, and he diagnosed me.

I still hope you'll be careful, even after all of these years of having MG. Not everyone can take that much at a time.

Annie

My dose has fluctuated from 60 to 120 mg 4 times a day and 180 at night. I know when I am getting too much, my pupils look like the size of a pin and I start cutting back.

kathie

Of course I am closely monitored but before this dosage, I was not sure I was going to make it. I specifically asked about an upper limit and he said that there is not one but most people cannot tolerate this much. For now it works but I'll see how I do this summer.

As I go to the neuro on March 19th, I have been experimenting with my dosages trying to figure out what works for me. My opinion is I am taking to much and side symptoms are worse than they should be IMO. When I was diagnosed back in November, the only issue I had was a droopy eyelid. Now with taking Mestinon, Speech issues as well as sore body all the time and fuzzy head most of the time. Last night I went from 60MG to 90 as 60 wasn't cutting it. My current dose is 60MG 4x daily. My body aches were worse this morning. I am now cutting back to 30mg 4x to see if this gets me back towards normal. I just can't see my MG getting so bad in such a short amount of time so I think I am over medicating. This Medication is so hard to actually know where you are with this disorder.

Yes, Mestinon dosing can be tricky. Pdsmith, did your docs say if you had generalized MG? Or was it strictly ocular at the time of diagnosis? It doesn't sound like it is now, though.

Give your neuro a call.

Annie

It was easy enough to diagnose after a head and throat Cat Scan I had at the ER ruled out a stroke and tumors. The Neuro checked my eye by putting ice on it and it got better momentarily. I then had some blood work done the following week and it confirmed that I had MG. At this point, I believe my throat muscles are involved as well now as my wife is saying that my sleep apnea has gotten much worse along with my speech. I have had major work on my palate, had my adenoids and tonsils removed 6 years ago. I can really feel it in my eye and throat tonight as I pushed myself and rode my motorcycle 270 miles to see if I can make a rally next month that is 850 miles away. I did feel better with the lower dosage before I pushed myself today.