TOPIC:

Hi, Hannah's consultant wants to try steriods. He said that in theory her count will drop again as soon as she comes off it, but for some people the count will still stay high for quite a while after. I'm just wondering if your child took steriods did the count drop straight after they came off or did it stay high, and if so, how long did it stay high for?

Dougie had two fortnight long stints of steroids early on in his ITP journey - the local hospital didn't really have any idea about ITP and they would want to treat him when his count went down to 1. It was a while back, but I seem to remember that both rounds got his count up to about 40 by the end of the first week, and then it went down from there even though he stayed on the steroids. When he came off them, he ended back where he had started off within days. He was treated at 1 mg (?) x body weight whereas Dougie's current dr uses 4 x body weight but only for 4 days if he uses steroids. On the plus side, I don't remember them adversely affecting his mood or his appetite.

When he had rituximab back in Jan, that comes with a massive dose of steroids given IV, Dougie's count went up to 70ish at the end of the first week, and then stayed over 30 for a few months which his dr attributed to the weekly steroids rather than the rituximab - so maybe they can work a bit

Do you mean decadron pulses or long-term prednisone? Some folks on here said the decadron pulse was rough for a few days, but worth it to feel safe and upbeat for the rest of the month. Julianne's first decadron pulse (at almost 14 years old) took her count up nicely, but it dropped precipitously right after the pulse ended, and she had a nonstop nosebleed (about a pint lost through the nose according to the doc) that landed her in the hospital for IVIG. We didn't try it again. Others on here have had positive experiences, however, and hers may have been unusual, so I wouldn't dismiss the notion of pulses just because someone else had a bad experience with it. On the up side, after that IVIG treatment, her counts steadily began to rise over the following months, and she has never needed treatment again. Today she is a healthy college kid and maintains normal counts on her own. I can't say the IVIG or the decadron had anything to do with her improvement, but I'm thankful for it. Julianne tolerated brief prednisone treatment to get her counts high enough for tooth extractions. I don't remember how old Hannah is, but that is something to consider also. I don't know that I'd want to put a child, especially a prepubescent one, through long-term continual steroid treatment. On the other hand, I've been in that spot of feeling desperate for a resolution, and we asked about every treatment available at the time. Only you and the doctor can decide what's right. Good luck as you go through this.
Norma