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...
Saw my neuro today. Was not happy with my symptoms and added prednisone 20mg to my mestinon. I have been very nervous about having to take a steroid. Any input would be helpful!
I used it for a year, starting at 20mg ramping up to 60/per day to get MG symptoms gone in about 3-4 months. Then I made some tapering efforts to get to the lowest effective dose aiming for 10 mg or less per day.
I wanted MG to get controlled quickly and didn't care about the side effects during that time. Prednisone did that for me. After MG was in control (meaning my mg symptoms were mostly gone) most of my problems then were the side effects of prednisone (sleeplessness, BP, glucose levels, mood problems...).
As I tapered down they mostly went away. I think I was about 6 months with relatively high doses (20-60, mostly at 40) and then 6 months dropping to zero. I had planned to switch medications as I tapered but took a chance that I might be one of the 15% who go into remission and tapered off of prednisone without starting an alternate drug, and did find I was in remission (and have been for 4 years).
Some of the prednisone side effects are visible and for folks who are worried about their appearance, can be annoying. They include "moon face", and weight gain, hair changes, and others. Prednisone seems to enhance the appetite and make it easy to put on weight, so trying to control weight is part of the therapy.
As you begin prednisone, you should read up on what folks have said about it here and also on websites for MG. I think this page is fine-- http://www.myasthenia.org/portals/0/docs/Prednisone.pdf
Prednisone works. Mom, who had polymyalgia rheumatica, another auto-immune disease, took prednisone at 9-11 mg/day for 25 years to make life tolerable. It did, and she passed away at 91. She did get diabetes, cataracts, had some osteoporosis, but all of them were manageable.
To get a patient perspective try this funny video https://www.youtube.com/watch?v=gYlgtloOztU
Good Luck
Russ
I was on 20 mg of prednisone for 5 months before tapering down now to 10 every other day, I'm also on mestinon and imuran. I didn't have too many side effects on 20 except my face got a little puffy, just watch your sodium and diet closely . The prednisone really helped my Mg symptoms a lot , I think you will be ok on 20 and it will help you feel better!
Good luck , hope you get better soon.