Prednisone Not Working?

Hello,
I have been up and down on prednisone for about 6 weeks now, ranging between 50 and 80 mg/day. In spite of a steady dose of 60mg/day for the past 2 weeks, my platelets continue to drop.

What have you experienced? What can I expect as an alternate treatment? (I am so not enjoying the prednisone). I am also trying to get into a special program at the University of Penn in Philadelphia. Signed the release today to have my records sent to the Penn Comprehensive Hemophilia and Thrombosis program. Once they review my records and determine I am eligible for an appointment, they will schedule one. I hope I can get in. I don't like feeling as though I know more about my illness than my doctor does.

Hoping for higher platelets,
Becky

Becky:

Is Prednisone the only thing you've tried? There are quite a few options:

www.pdsa.org/treatments/conventional.html

How low have your platelets been? Are you having symptoms that make you uncomfortable? (Most of us would drool over 50K!)

Mmmmmmmm.....50k !

Lots of treatments available other than Prednisone.
I view Prednisone as a starter treatment, along with Dexamethasone. Both are really dirt cheap, common, and generally will boost a platelet count. Both are absolute hell to live on (for the patient and those around them)for any length of time.
Luckily for us, there are many treatments available other than steroids.

Hi Becky,

The Penn program sounds impressive--hope you get in and are able to explore some other treatment options!

The prednisone is terrible, I think everyone here would agree. I had an easier time with the Decadron "pulse" -- but for me it only kept my platelets up for about 10 days, which didn't make it viable for long term. I hope you can start tapering off the pred soon.

Good luck!

Sarah

Hi Everyone,
Thanks for the comments. I have been as low as 19K, and last count was 34K, even with 60mg/prednisone.

I have done numerous bursts of decadron. Oh, how I dislike that one! I suffer many nasty side effects on decadron. With the prednisone, I am revved up, but exhausted, I have weird aches & pains, horrible sweating, and of course, the beloved moon face.

I'm not happy with my current hematologist. I feel like I know more about ITP than he does, and he is frequently not available when I call the office, and I am not crazy about getting advice from other doctors in his practice who do not know me at all.

For those of you familiar with PDSA, Dr. Douglas Cines is a Medical Advisor, and his office recommended the Comprehensive Hemophilia and Thrombosis Program. It is my understanding that he somehow oversees this program. I believe that my life and my health is worth the investment of time and travel to go to this facility in Philadelphia, so I can be here for my kids and my family.

Becky

Let us know how it goes.

I have had two long duration cycles of pred without a positive improvement, just get the negative side affects. My recent round of 17 weeks didn't have a single positive response - just the side affects which I'm still experiencing. I don't intend to ever go on them again.

Like the others before me said, there are many other Rx options that needs to be attempted. Rituxan was the one that finally improved my counts from 10 to 300's.