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...
My neuro (at Mayo Clinic) said that she had many folks on long-term prednisone at low doses (under 15 mg per day or alternate days). She said it all depends on whether or not there are other problems with the prednisone. My own was that I was being pushed into type 2 diabetes, and so she thought changing to Imuran would be better long term. I went into remission (and am there now for almost 4 years) so didn't have to make the switch.
Mom, who had an auto-immune disease, polymyalgia rheumatica, took about 10mg of prednisone per day from age 65 to when she died just before her 92nd birthday. She did get type 2 diabetes, but as she said, "life would have been unlivable without the prednisone." She did try to taper lower, but at about 7mg/day the pain would be almost unbearable to do anything. So, I was never really scared of taking prednisone long term as at the time, Mom was still alive and thriving. Her death was from heart failure, a sudden overnight peaceful stop after a regular active day, not related to the prednisone.
Good Luck
I began tapering prednisone and none of the MG symptoms came back as I dropped lower. Eventually I tapered off of prednisone and after several months without a return of symptoms, my neuro said I am in drug free remission that might last for months, or maybe years or the rest of my life.
As I was tapering prednisone, my neuro wanted me to start Imuran (we had decided that would be better than prednisone long term for me). I asked her "if I start Imuran before I am off prednisone, I will not know if I am one of the 15% who do go into remission. Should I delay starting it?" She said it was up to me -- and if I could accept that MG could comeback and I would have to restart prednisone, I decided to try it. I was retired, and could get by with a restricted activity if needed, and I knew prednisone would likely work again.
Anyway, I tapered down to zero and MG symptoms have not come back now for nearly 4 years, so it was the right decision for me. However my neuro was less sure I should as 15% chance is not very high.
good luck Russ
I am going to give zero prednisone another try most likely after I get this flare-up under control. My flare-up started 5 weeks after hip replacement surgery. My original symptoms appeared 5 weeks after my first hip replacement last year. I don't believe in coincidences.....lol