Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
HELLO ALL. Have been doing the IVIG since January and Imuran since May. Have not seen any changes in my condition yet. Breathing has not gotten any better. The IVIG has been every month, changing that to every 3 weeks soon. Imuran is 5 (250mg)tabs a day. Have another couple of months to go to see if that will work. If that don't work will try something else. Getting very depressed about the whole thing. Anyone have any luck with other medications and or treatments? I will see what bag of tricks my neuro has up her sleeve.
My eyes are starting to act up again. I thinks its the 4 (10mg)Prednisone I take. I no longer take the Mestinon, that didn't work. It's been a long year, hope things improve in 2017.
Hope all is well with you guys. MERRY CHRISTMAS AND GOOD LUCK IN 2017
I took prednisone starting at 20mg/day and got up to 60 mg/day in about 3 months before it helped. I also used a lot of mestinon at first.
I wanted the fastest treatment that would get me back functional, and my neuro said prednisone at high doses worked fast. I also had could have had IVIG,
My reasons for not doing IVIG '
-- it is an extremely costly treatment, although my insurance would have covered most of the cost
-- it ties one to monthly treatments and a hospital/clinic.
-- it is a temporary fix -- does nothing to get my MG undercontrol without the ongoing infusions
My plan was prednisone and mestinon at high levels to keep me functional and get MG symptoms under control. Then gradual tapering of prednisone and switching to Imuran over about 6 months.
When MG was undercontrol, my neuro had me taper prednisone to see what the lowest level I could get by on before we started Imuran. I tapered completely off of it and have been in remission without meds for 3.5 years now.
Prednisone at high doses certainly worked for me to get control, but taking it at that level (60mg per day) was not pleasant and had some side effects. But I wanted to get rid of the MG symptoms and read that prednisone was most likely to do it for me.
Good Luck
I started with 90mg when I got up. I also took two loperimide (Imodium) to keep my digestive symptoms under control in the morning and always took it with some kind of food -- cookie, bar, etc.
Then if I wanted to be active in the morning I took 60 mg every 2 hours or so. When I was taking it easy, I dropped back to about 60 mg every 3-4 hours--taking one when I needed to do something, like type on the computer or eat.
Towards evening, I quit as I had bad leg/foot cramps with evening doses. I used a CPAP for breathing and that helped overnight without mestinon and the few times I had troubles during the day.
I took about 6 60-mg mestinon during my waking hours. Sometimes I took 90 mg (1.5 pills) if I wanted to be a little extra functional for a while. I couldn't handle 120 at a time -- got real twitchy and broke in sweat. I think my neuro gave me a prescription for up to 8 per day to take as needed.
When prednisone worked, mestinon was not needed. I keep some around as to use as a test to see if, after I take one, I feel better or if I just get twitchy. So far after 3 years no return of MG yet.
My goal was to be as functional as possible as quickly as possible. My wife was starting a year of cancer treatment that was extremely hard on her and I needed to be the support person. Lots of mestinon and high doses of prednisone got me through the first 3-4 months as she got sicker and sicker -- and after that the prednisone only controlled my symptoms. I stayed at high prednisone (60 dropped to 40) until she through and then began my serious efforts at tapering down gradually.
Good Luck Russ