I have been having a really rough time since the holidays. I had about 5 weeks where I was feeling good. The Cellcept was working and I was feeling almost normal. In December I travelled to the west coast, had lots of company for Christmas and started weaning off prednisone. I also had my first Reclast infusion for osteoporosis.

I started feeling really exhausted and it seems as if my mestinon was barely working. My double vision is back too. I really want to stay off the prednisone if at all possible. I have read it can take several weeks to get back to normal after stopping steroids. How have others done in this situation?

The hardest part is trying to get my husband to understand that I really have to scale back on my activities again. He is having a hard time with this set back

Happy 2014!! I hope you all are doing well. Looking forward to a better year!
Sandy

I find the ups/downs to be very challenging. Sometimes it is worse to feel normal/good only to have it taken away (at least I find it very difficult )
Last wk I felt good and today I have major league blurred vision/flat out exhaustion. It's mental ping pong.

I can empathize, too, ab your hubby. It is hard on them as well but you def need to take it easy.

It took me a long time to even out after the pred so I think that is par for the course. Some days I could barely move as I was acclimating to life without the steroids. I too have NO interest in ever being on them again.


I wish I had a magic wand for all of us.