not in remission anymore

My husband just found out at a regular check up he is no longer in remission with his itp. His counts were down to 15 again and now getting the spots on his feet. We are both really discouraged by the news. He had his spleen removed which did not work, steroids, steroids, and more steroids which ruined his hip (new hip in Februrary) then he had Retuxin that seemed to do the trick. The Dr. does not want to use steroids anymore due to the damage already with his hip. He went in the next day for IVG and is taking Danizol. The Dr. says it can take up to two months to help........any one out there that has tried this drug and any sucess stories. Betsy

So sorry to hear that! They won't try Rituxan again?

How long did the Rituxan work for, and how high did his counts get? If they were normal for a while, he might get an even longer remission if he does Rituxan again.
Erica

His Dr. doesnt want to try Rituxen again right away. He was in remission for about a year after that. He is trying a drug called Danezol........havent heard much on that...

It doesn't work very often or very quickly, I can tell you that.

My first remission from Rituxan was 9 months. My second is 2.5 years and still going. Why doesn't the doctor want to try it again?
Erica

Sorry to hear that, hope they can get them back up quickly

:(He had a double does of IVG last week and it only raised his platelets by 4000....It makes me very nervouse when he is out working with low platelets..........

What does he do?

I also had a great, long remission from my second Rituxan round.

Starting my 3rd round with Rituxain next week ... 1st round gave me a year, 2nd round about 20 months. Crashed last weekend "3000" ... winro .. and prednisone and back up to 99k as of today. Hopefully 3rd time gives me and even longer period of remission.

So the regiment they want me on is 1 treatment a week (800mg) for 4 weeks ... total of 4 treatments. then they want me to do what they are calling 'maintenance" and do a rituxain treatment every 3 months for 24 months for a total of 8 additional treatments over 2 years. anyone else ever hear of this "maintenance" schedule. Seems maybe treating just to treat, if counts are up after initial 4 treatment, struggling to take it just to take it as "maintenance"

Thoughts

The maintenance plan is how they use Rituxan for some cancers. It has no precedent for ITP treatment, there is no reason to believe it would be useful. In the cancer treatments, apparently the Rituxan cleans up stray cancer cells that appear. That doesn't apply to ITP.

Even the four 800 mg treatments may be overkill, there is research showing that two low dose treatments may be equally as effective.
Erica

Kevin:

I agree with Erica. My thought is that maintenance with Rituxan is definitely overkill. We've had a few people here over the years (maybe 3) who had doctors suggest that. I don't get the point of it. You get a treatment while counts are still up, but what if they would have stayed up for two years anyway and you get a maintenance treatment every three months after the initial four. That's about 7 unnecessary treatments. Without the maintenance, counts might go back down after a period of time. So what? Then you go back to treating with something and you're no worse for wear. It's not like something horrible will happen immediately if counts drop, and most do know when that's happening.

My second round of Rituxan ended up being only one treatment due to a bad reaction. I had one treatment and counts went to 150 after that and have stayed up. I've now had 6 years of remission. Imagine if I'd done maintenance...would have been a waste of time and money, not to mention the unnecessary toxicity. I would also have probably attributed the remission to the maintenance instead of the natural course it took after only one treatment.

When you're in this long-term, the less, the better. It adds up over the years.