new and ready to get off prednisone

Hi Kim, I can definitely relate to being to feeling blind-sighted by this. I felt pretty great before being diagnosed and now everyday is a a challenge with this crazy prednisone. My worst problem now is still the swelling in my neck/face and energy level.

I go in for cbc on monday. I am holding on doing an IVIg for now. I just want to see if a slower taper off pred will keep my counts high enough for a while (they were back up to 145 last week), then I'll decide. I don't want to rush into anything and I am thinking of seeing another hemo.

I am trying a macrobiotic diet. It can't hurt and I need to feel like I am doing something positive for my body.

Hang in there. Hopefully you will be one of the lucky ones who can get off of it smoothly and your counts will stay high.

I'm glad you're giving the slow taper a chance, even though you're experiencing such bad side effects from the Prednisone. So far I haven't had any negative side effects while on it, just when I'm tapering. That's the part that scares me.
A macrobiotic diet couldn't hurt. I've been eating more fresh fruits and vegetables lately, trying to avoid sugar and salt. I've always eaten a lot of poultry, and now I'm adding more salmon to my diet. I read somewhere that tomatoes boost platelet levels, so I'm eating one a day.
It is a shock to be diagnosed with this. I thought they were over-reacting when they kept me in the hospital for 3 days. I felt fine physically, and still kept working every day when I was released. I even worked overtime and weekends, maybe it was the extra energy from the Prednisone.
My petechiae are slowly going away. I was like Exhibit #1 in the ER. Everybody wanted to come and look at them. If this is my 15 minutes of fame, then that totally sucks!
I feel so bad for you that you are having such a hard time with the Prenisone. If it helps any, I'm out here in cyber space thinking of you and wishing your pains away.
Take care!

Thanks Kim, wishing the best for you too!