Myasthenia Gravis

[garydonmccluskey]

I was wondering what dose most of you take of the mastinen. I am currently on 60 mg every 6 hours. I am also on 15 mg of prednisone daily. I read where one person stated she was on 120 mg every 4 hours. My neurologist suggest experimenting some to see if there are changes. I appreciate any help from all of you. I have just had 7 plasma exchanges with no help and hope to have IVIG soon.
thanks, Gary

[amm34]

I took 120 mg q 4 hr for about 1 year- also did IVIG and pheresis. I am a young, thin, female. It does depend on your weight and tolerance. I then got heart block, which the cardiologists believe might be due to the mestinon so while monitored in the ICU they tapered me to 60 mg q 4 hrs. I am trying to taper more as I continue to get syncope. I have gotten down to 60 mg q 6 hrs, but I can't go lower. When I first was dx, I did 60 mg q 4 hrs, with no effect. Taking it up to 120 was so much better. I still alter it a bit depending on my activities.... more before exercise, less on a Sat reading... I think it is a process to find the correct dose. Good luck.

[peacequeen]

I take 120mg pyrido 4 times a day. I also take 4 cellcept capsules twice a day. I had MG crisis and was in ICU for a week, had the IVIG,,,unfortunately only 2 doses because I had a reaction and developed aseptic meningitis. This is rare, about 1%. IVIG is a good treatment..but not for me. Make sure and ask your doc if there is something you can take prior to the treatment to avoid a reaction.

[garydonmccluskey]

Thank you all for the info. I am now taking 60 mg every three- four hours. Seems to be smoothing out things a little. Would love to lower the prednisone, but can't seem to function without 15-30 mg daily.
Gary

[sewray]

I can appreciate your concern. I am on what my doctor tells me is a high dose of mestinon(pyridostygmine). I take 3 (60 mg) tabs 6 times daily plus one 180 mg timespan( time release mestinon) at night to help carry me thru the night. I am also on the prednisone of 40 mg one day and 20 mg the other. My symtons seem to be subsiding. They are weaning me down off the prednisone as they say I have been on it too long and too high. I was at 40 mg everyday for 8 weeks. That really did help keep the MG under control. I have been to 3 neurologists all with a little different opinion on the treatment of MG. Of the three one is a specialist (expert) on the disease at the University of Utah. I have an appointment with the University of Washington to get a second (expert) opinion the middle of July. It seems that they are in no hurry to get you in to help. Even after you get in they are in no hurry to get you back or follow up. You need to be very proactive in your disease, I have found out. The doctors, at least to me, just can't seem to get excited in helping. This is a rare disease and we are all test rats for them. I wish you the best. I will watch incase you have any questions. Incidentally you can take up to 25 (60 mg) tabs of the mestinon, according to the manufacturer, each day.
You can verify that by contacting your pharmarcy. They have that information on hand.