ITP is back......

My husbands ITP is back to a hugh surprise for us as well as his Dr. He had IVIG with no result, now Rituxun with no results as of yet.....the last time he had Rituxin he had a hugh increast to 130,000 after the first treatment. Steroids helped alot the last time, but at the same time he had to have a hip replacement because of them so no more steroids for him I guess.....it's just frustrating to him that this time he doesnt seem to be responding to anything. I worry about him having a head bleed if he falls, gets bumped, is in an accident, etc.....

I think we all can relate to the worrying about bleeding from a bump or accident, but we all know too that worrying isn't doing any good at all! What are his numbers now? How long since the last Rituxan treatment? How's he doing with the hip replacement?

Give Rituxan more time to work. It's very rare to get a rise quickly. It took me four weeks. You still have hope.

I experienced 10y with NO ITP symptoms and had gotten to the point that I didn't really think about it (other than the periodic CBC). I was surprised, maybe shocked when bruising and petechiae showed up and within 2 weeks I was at 10. Refractory to pred (as I was 10y ago) and bounced between 10-25 for several weeks. Eventually decided to try Rituxan (gave up my spleen 10y ago) and it was 9 weeks before I showed any significant change. Around 8 weeks I rose to low 100's and a week later I saw 203. Another week and I was 344 and over the past several weeks I've been 260/270 (other than 1 week where I lost 200 but gained it back the next - that was scarey - go figure). The only Rx change over those weeks was my Pred taper

The reason for the lengthy history is that it was 8-9 weeks before anything significant happened for me. It was a LONNGGG 8/9 weeks and I had given up hope even though many here said give it time. It may be hard to wait but perhaps my experience will give you hope - have faith that it will work and rely upon our Lord and Savior to comfort you in those LONNGGG weeks.

I highly recommend using this site to vent and question over the weeks ahead.

Today we went for his third Rituxin...platelets fell from 10,000 to 2,000...The last time he was on Rituxin he rose to 132,000 after the first treatment. However, he was on steroids (hi doses) as well. He can't have the stroids again due to the joint damage. He lost the spleen, had IVIG, and now Rituxin with no results as of yet. After next week if his counts are still low he will be getting a bone marrow biopsy to make sure nothing else is going on. I guess Nplate is the next treatment. But the Dr doent like to use it if he can avoid it. He said it can damage the marrow. So, needless to say we are both getting a little frustrated to say the least. I am happy to find this site. He on the other hand doesnt like to get one here. He gets more upset when he reads some of the posts. I guess he is just scared....

His hip was replaced last February...that isnt going well for him. He still has a limp and pain again. Poor guy just cant seem to be a break....