frustrated!!!!

I took my last 10mg of pred on thanksgiving day!!!! I was never more happy that stuff is the devil!!! I went to my hemo apt yesterday first one since I stopped the pred. my counts on nov.20th while still on 20mg of pred were 184. two weeks of no pred and my counts dropped to 99!!! ugh so frustrated!!! have a second opinion scheduled for the 23rd of this month just to b sure I have some doubt in my current hemo.

Chels

A second opinion is never a bad idea, but your current Hemo isn't doing anything out of the ordinary (except tapering that last dose too fast). Tapering slower may not have changed the circumstances. Your counts might fluctuate up and down for a while (or maybe not), and that is par for the course with ITP.

It's pretty typical to do more than one round of Prednisone or move on to another treatment after the first round of steroids. In most cases, counts do not stay up although some people do get lucky. I know it's frustrating, but ITP is a series of ups and downs and it takes most people a few months to a year before achieving stable counts. Some people do not respond to treatments and never do stabilize; you are not one of them. Patience is hard, but it is a requirement of having ITP. There is no magical drug or doctor who can fix things quickly. Staying calm and going with the flow gets easier as time goes on. You've had a great response so far and although your counts are not 'normal', they are darn close right now. You're doing okay. Hang in there, everything will be fine.

Agree with Sandi, get a second opinion - always good to hear more than one voice on the subject. Plus, if you ever need to switch hemo's, you've essentially 'tried out' another doctor for already. That's what happened to me.

Yes, patience is tough. I think others would tell you that trends are more important that swings from one count to the next - especially the range that your counts are in. If you had gone from triple digits to single digits, that would be a huge worry. But you also have to gauge how your body is reacting. For some people symptoms may occur at higher counts than for others.

Glad you're off the pred - and hang in there, you'll get better!

Agree with you... Pred is the worst drug I've had. Still on 10mg to maintain not going broke on platlets.

That being said I agree with sandi... The last 10-0 taper needs to be done slower to allow adrenal function to kick back on.

With your counts I'd say don't panic yet. Doing pretty good for now an next week you'll know. Keep us posted. I am just as short fused as anyone when the news is less than ideal. Good luck

Thanks everyone!!! I will keep you posted goodluck on the pred and coming off I have worse withdrawals it was bad 2weeks I just wanted to sleep!!!!