Future Treatment Advice

I was wondering if any one had any advice on some 2nd/3rd line treatment options. Last July I had Rituxan and my counts reuturned to a normal level ~250. I am hoping the remission lasts but want to be prepared if it does not. So I was curious if anyone had opinions on doing a splenectomy, nplate, or promacta should another flare up occur? My doctor seems to lean towards the splenectomy, but is willing to try other options if i prefer. For obvious reasons I don’t like the idea of losing an organ, but am concerned about the long term side effects of the other drugs.

Other info that may be relevant, I am 27, was diagnosed at 18. I have had three episodes; first was treaded with pred, ivig, and Danazol, in remission for 5 years; second treated with pred and ivig, remission for 1.5 years; third treated with Rituxan after no response to pred, minimal response to ivig, and minimal response to Winrho.

Well, you seem to be having a very good response to the last Rituxan treatment. On average, it lasts a year although some people get less and some get more. Your counts are still in a great range. My first round of Rituxan gave me 13 months until I had to treat again. They slowly dropped over that time period and I could see the gradual decline. I had one Rituxan infusion after that, not even a whole round, and my counts have been up since (that was in 2006). I am not a fan of repeated rounds of Rituxan if they are needed every year or two, but if a person can get three or more years out of it, it could be worth trying again. Lower doses or fewer treatments can be just as effective as the full-blast four infusion general protocol (studies have shown).

Promacta would be my next choice. It's much easier to control counts with Promacta than with N-Plate and sometimes low doses are all that is needed. Some people have been able to taper down to a pill a few times a week or get off completely and maintain safe counts.

You seem to get great remissions so I'd hang onto that spleen. Permanent remissions are possible.

Thanks for the input. I had wondered if further rounds of Rituxan were possible. And that is good to know about the promacta, I thought of it as only a forever treatment. One of my concerns is building up resistance to a treatment, like I did with the prednisone, so long term treatments are a bit scary, but with how fast treatments change I guess I just have to hope for something new should that occur.

You're far from the point of worrying about something new. You haven't even tried all of the ones that have been out there. The problem with any new treatment is that long-term side effects are not known. I stay away from anything new and will keep doing that unless my life literally depended on it. I've had enough bad experiences with medications that are well-known....I'm not going to go for new ones.

No, Promacta is not always a forever treatment. Some people have had good results. It has stopped working for some but others have been taking it for years with good success. If it works and has few side effects, it can be a good way to manage ITP.

I find Promacta much better than N Plate. Counts are more stable and it's easier to administer. I am not parting with my spleen .

Prsher wrote: ...
I have had three episodes; first was treaded with pred, ivig, and Danazol, in remission for 5 years; second treated with pred and ivig, remission for 1.5 years; third treated with Rituxan after no response to pred, minimal response to ivig, and minimal response to Winrho.

Interesting. What was the story about not including Danazol in the second episode?

The reason for omitting the Danazol in the second round is likely because I was seeeing a different hematologist. I have lived in different states for each episode so I have had different hematologists for all three.

There is a chance you could have a longer remission-and you can have Rituxan again.
My first round of Rituxan gave me a remission of 4 1/2 years. The next 3 rounds gave me 2 years each time. I just had another round 2 months ago and my platelets were normal at last count 350k. I’m not so sure now as I’m having a lot of bruises and will see my hematologist Friday.

dru wrote:
... my platelets were normal at last count 350k. I’m not so sure now as I’m having a lot of bruises and will see my hematologist Friday.

If you've been partying like it's 1999, things like that can happen.

Yes, my platelets were fine, think my bruises were from too much Aleve and doing yard work-
sorry to disappoint Hal, no partying here