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 everybody...I am trying to come off prednisone. I've been on it for 3 1/2 years and my Doctor wants me to come off of it. I am starting to feel the weakness more and more now. I was at 22 MG and at 16mg now. Since Christmas I have been really weak. I went up today to 17mg and went up on my Meston. My ? Is there anybody that is not taking prednisone and going through the IVIG instead. That's what my Doctor wants to do. I don't do very well with IVIG. I don't know if I should go back up on prednisone or just keep coming down and do the treatments
Cassy
Cassy
FWIW, I currently use Prednisone and IVIg.
Dropping prednisone is very challenging. I was able to go really slow and then many times I had to stop and stabilize for a month or even more before I tried to drop again. Drops in prednisone can make me weak for a month or so until my body adapts. The first rule of thumb that helped me is only drop 50 percent over a 6 month period. So when I was at 60 I would plan on it taking 6 months to get to 30. And I think I went slower than that.
Now I am down to 6 1/2 one day and 7 the next. every time I would try to do 6 1/2 and 6 1/2 I would get sick. I have started a new drop and I love it. I will go to 6 one day a week. For example I will do 6 on Sunday for about 2 weeks. Then I will do 6 on Sunday and Thursday. I will do that for probably a month and a half. I am determined to get my prednisone lower but I know it is hard. Slower works so sososos much better. Well worth it. Can you do cellcept?
I went to school in MA - loved it.
I've never been on prednisone. I rejected it for a variety of reasons. I am on IVIG, and as it has been said, IVIG is not an immune suppressant like Cellcept and Imuran. I am on Cellcept also, and of course Mestinon. a lot of us are on multiple therapies and it would be good for you to ask your neuro. IVIG gave me my touch, talk, swallow, chew back, and does give me some energy, but it wears off in 2-3 weeks.