Hi,

I'm 36 years old and have MG since I was 15. I had a thymectomy when I was 15. I was put on Prednisone in 2003, 15mg a day. When I got pregnant, I got really bad and started Plasmapheresis weekly. After I had my baby, I was on 80 mg Prednisone daily. I finally got down to 30 mg every other day with Plasmapheresis every 5 weeks. Currently, I'm trying to lower the prednisone to 25 mg every other day with Plasmapheresis every 3 weeks, with the assistance of my Dr. with the long term goal of 20 mg possibly 15 mg every other day. Has anyone had exeprience trying to get below their "threshold" of Prednisone and has reoccuring weakness every time? This is the third attempt at it, and I'm hoping for positive results this time, as my Dr. and I do not want the long term side effects of Prednisone.

Thanks!
Jodine

I was on 60mg for about 1 year. My neuro-muscular Dr said I needed to get off Prednisone because I could barely walk. So we started reducing and the strength came back to my legs. I am down to 15mg but when I went below 20mg I started getting weaker. I am on a every day schedule. Dropping 2 1/2 every 6 weeks. I am so weak we have started IVIG again but it is not helping.
Mike

I've had several courses of prednisone-as high as 60mg daily. Most recently I was slowly weaned off of prednisone (about 2 1/2 mg every 3 weeks). Unfortunately, about a week after I was off of the prednisone the weakness came creeping back. I managed off of the prednisone for several months, but with significant leg weakness in the evenings. I finally decided to restart the pred at a low dose (with my neuro's OK). I'm doing so much better on just 5mg daily. It's amazing to me that such a low dose can work for the weakness.

I still have double vision though. The only time that has gone away is when I was on the high doses of prednisone. I still have hopes that I can again slowly wean the prednisone and tolerate being off of it. I just don't want to take it for the rest of my life.

Cate

Oh Cate I agree but I was doing so much better at 40mg-20mg. I'm just not sure where we will go with this. At 15mg my legs are so weak and I get short of breath after going up 7 steps. We live in a tri-level so I live in the bottom 2 floors.
Mike

I too have been on predisone about 3 years - I am curently at 10 every other day. When I drop below that, adrenal fatigue kicks in. Those of you who are on low dose predisone and then drop to zero may be having that problem instead of an exaserbation (sp?) of mg. General overall weakness, overall "just don't feel good" and joint pain are my main problems with adrenal fatigue.

I think the way it works is that the predisone is doing the work for your adrenal gland and it just stops working. By reducing the predisone slowly, we are trying to give the adrenal time to start working again. But, sometimes, it just doesn't. As my endocronologist explained to me, your adrenal gland produces about 5 mg of the same hormone as predisone and you may be okay at an avg of 5 mg/day of predisone if your adrenal gland doesn't kick back in again - and that has been known to happen. Of course, it all depends on your body and how it is handling the prednisone - We are all different!

I agree that when I was off of the pred I could have been experiencing adrenal fatigue rather than MG exacerbation. I did have weakness, but also had significant joint pain. Sometimes it was hard to tease out what was what. That's why I endured about 3 1/2 months of being miserable, thinking that it was probably just my adrenal glands and I needed to give it some time. Does it take that long before the adrenals start to function normally again? Or do they ever?

Cate