How many chances do you give a treatment?

After being diagnosed with ITP more than a year and a half ago, I've tried a lot of treatments and ruled some out. My current course of treatment is Rituxan every 6-8 months, which I've done twice now. The Rituxan does raise my counts, but still not to a level that makes me completely comfortable. Without any treatment I sit in the 8k-11k range and am a 'bleeder' with huge bruises and frequent nosebleeds. After Rituxan I usually jump up to the 80k range a week or so after I have finished all 4 weeks and then slowly go from 80 down to about 30 by the time I start Rituxan again (with a few forays into the 20's if I get sick)
I'm not really unhappy with this response, but I'm a fairly active 26 year old and it's on my mind a lot. I would love to go rock climbing, skiing, horseback riding etc without being in constant fear of a fall. Even with my counts in the 60s on my most recent ski trip I came back with bruises that didn't go away for a month.
I must admit that while I resisted at first I'm started to be lured by a spleenectomy. Rituxan wears me out for the 4 weeks that I am on it and I don't really look forward to doing it agian for the same marginal results. At the same time I keep wondering if the third time will be the charm for the Rituxan and I could start getting counts that would make me comfortable enough to do the things I love more often (fingers crossed for 100K). How many chances would you give a treatment?

The second time I had Rituxan I had a much better remission, with higher counts and lasting longer (April will be two years). The first time only lasted 9 months and my counts didn't hit 200.

OTOH, with WinRho each time I had it there was less of a response, until the third or maybe fourth time it just didn't work.

Prednisone also decreased in the amount it helped. And after a while I refused to take the higher doses the doctors wanted, was only willing to go up to about 30mg which kept me in the 20s or 30s.

I always remember the nice note Steve/Gort posted when he noticed after my second time with Rituxan that my counts were headed back up.

I would lean toward you trying Rituxan a third time, maybe just two infusions which seem to do just as well as more. But I personally fear the splenectomy a lot.
Erica

I think I might try Rituxan one more time, but wouldn't go for any more than that. I had a much better response after my second round than I did my first.

As for splenectomy....that is a tough decision but I think you'll know when it's time to consider that. I've always said it's time when you get to the end of your rope.

Spleenectomy scares me too, but the possibility (however slim) of a long term remission is very tempting as well. I'll give Rituxan one more shot, I just end up feeling like blah for several days after each dose. I'll talk to my Dr and see if he would be open to trying 2 rounds insted of 4.

Do you get Solumed with the treatments? I found that having that made me feel great after the treatments....better than I usually did.

No, and I don't think I've ever had my Dr talk about it. What does it do?

Well, it's a steroid, so you get a burst of energy (I did anyway) and it also helps to inhibit side effects.

This is my second time with the prednisone and i think this will be the last time, it started to work when i first starting using it again. I was getting some good numbers, highest was 76, but my last platelet count was 21 even with 40mg of pred, so it is not given me really good high numbers consistantly.

I hope your next round gets you a real long term remission.

I'm getting closer to giving up, not quite yet but it could be soon if the IVIG doesn't last more than a couple weeks. I gave up pretty much all my favorite sports and activities for the last few years because of my crappy counts and painful bruising and stupid bleeding. It would be nice to get back to normal if that could happen.

I have an extreme case of refractory itp. current count 3k and going on 10 years of no success of getting and keeping my numbers up. about to start rituxan. interesting that some people need multiple cycles before numbers react favorably..

Jay:

I wouldn't say that multiple cycles cause a better platelet count; more than one round can sometimes cause a longer remission. Usually if Rituxan doesn't work at all, it is not tried again. A marginal response might be worth a second or third try.