has anyone else tried this?

hi everyone i was wondering if anyone else has been put on Rituxan for itp? if so could you please share your thoughts on it? i know everyone reacts different to it but maybe it could help give me insight to this medication. so far my research on this looks mainly for Rheumatoid Arthritis,and most of the reviews were from patients 25-50. my daughter is only 11 about to be 12.

Many, many ITP patients have used Rituxan as an ITP treatment. Hopefully, a parent will jump in soon with their experience. I have used it and had success with remissions.

It would be a good idea to post the question with a more specific subject line - like - ITP kids and Rituxan or something like that.
Erica

"The success of Rituxan in adult ITP patients has prompted many pediatric hematologists to use this agent in children with chronic ITP in order to improve platelet counts and to avoid splenectomy.12,37,38 Using a standard dose of 375 mg/m2 in 4 weekly doses, Wang et al demonstrated a complete response (plt count > 150,000/mm3), lasting for an average of 13 months, in just over 50% of pediatric patients with chronic ITP.37 A single annual dose of Rituxan would certainly lessen hospital time and optimize quality of life in these patients.38–40 Concerns regarding possible infection have proved to be unwarranted, with the exception of those patients who receive Rituxan following or in combination with other immune suppression such as high-dose steroids, azathioprine, or cyclosporin. Other centers are beginning to assess whether the standard dose of 375 mg/m2 for 4 consecutive weeks is necessary, as this dose was initiated for the treatment of CLL patients with a much larger number of CD20+ cells. Many have suggested that much less Rituxan would be necessary for ITP where there are far fewer CD20+ cells than in CLL. Indeed, a single infusion is usually adequate to clear circulating CD20+ pre-B cells in ITP, but only clinical trials can assess whether a single large dose or serial infusions of 1–4 doses is optimal to treat the pool of CD20+ cells in the spleen and elsewhere.38,39 It is important to realize that the CD20+ pre-B cells do not produce the antiplatelet antibody, which is the job of the plasma cells; rather, it is highly effective at presenting antigen to T cells, which in turn are driving the autoimmune response. Disruption of this interaction ultimately results in decreased antiplatelet autoantibody with very little to no decrease in normal immunoglobulin production."

asheducationbook.hematologylibrary.org/content/2006/1/97.full

OBJECTIVES:

This study examined the efficacy and safety of rituximab in children with chronic immune thrombocytopenic purpura.

STUDY DESIGN:

Twenty-four patients, 2 to 19 years of age, with platelet counts <30,000/mcL (microliter 2), received 375 mg/m 2 rituximab in 4 weekly doses. Platelet response was characterized as complete (CR) if a count >150,000/mcL was achieved; partial (PR) if 50,000 to 150,000/mcL; minimal (MR) if the count increased by >20,000/mcL to a peak count >30,000/mcL but <50,000/mcL; or no response (NR).

RESULTS:

Fifteen of 24 patients (63%) achieved a CR lasting 4 to 30 months, 9 of which are ongoing. Two had PRs lasting 4 and 6 months; 2 had MRs lasting 5 and 8 months, and 5 did not respond. Pruritus, urticaria, and throat tightness (but no respiratory distress) occurred with the first infusion in a small number of children. Three patients had serum sickness after the first, second, and third infusions, respectively. No increased frequency or severity of infections was seen, although immunoglobulin levels decreased to below the normal range in 6 of 14 cases.

CONCLUSIONS:

Rituximab may be a useful treatment for chronic immune thrombocytopenic purpura in children with a >50% CR rate lasting an average of 13 months, with 9 of 15 CRs ongoing (8 lasted 6 months or longer). There was no substantial toxicity other than transient serum sickness.

www.ncbi.nlm.nih.gov/pubmed/15689912

I had very short relief from my rituxan - a mpnth after the final dose, numbers went up to 75k, two weeks later went to 51, then to 30 a week after.

I can deal with the fact that it didn't work, because different things work for different people. But what was frustrating was that for me, the treatment was much more unpleasant than reported. I had a fever, chills, felt like i had the flu. For the next few days id have all sorts of weird stomach pains, as though my liver hurt, or my kidneys.... Then when i finally felt better, back in for another round. The treatment was pretty exhausting for me.

But please keep in mind that everyone is different - I've heard lots of people say it worked really well for them, and that the treatments were easy. I have even heard of people going back to work afterward. Winrho was totally like that for me, and for others it's no fun. After winrho I'd just go out to dinner with friends!

Too bad it didn't work either ;P

My daughter was diagnosed with ITP a month before her 13th brithday and after almost a year of trying different meds we tried Rituxin. She is 15 and is still in remission. Her last count was 165k. Her highest count was 224k after treatment, it seems to go down in the winter. Rituxin gave her her life back. She is playing high school soccer and living a normal happy, healthy life (praying it lasts a looong time).

The treatments make for a long day but they were pretty easy; she slepted through them.
Wishing the best your daughter, it's so hard to have to make these descisions for our kids.
Shauna

Srunge...Can you provide any more info? My 13 yo son has had ITP for 11 months now with no tx, juts watch and wait. Count was up to 154K 4 months ago but has dropped to 13k. 2nd opinion MD in NYC is recommending Rituxin and Dexamethasone together. Was this what your daughter had? What were the side effects? Did she tolerate well? Would you do it again? etc. Thanks so much, just scared with this 1st step at treatment.

Hi,
Sorry it took me so long to get back to you. We went with Rituxin after we tried many other meds, (steroides, Dex, Vincristine) Unlike your son, Emmy never went up on her own. It seems to me that if your son has gone back up on his own that is somewhat promising. Rituxin for Emmy had the least amount of side effects of all the meds we tried. It did take time from her to sit through the four treatments, as they took up an entire day. However they were non eventful and she slept through the actual treatment. Emmy did not get Dex with her treatment just a lot of Benedryl.
Her first treatment she was a little nauseated but she was givin medicine and she did fine.
I did notice that she developed a cough during the treatments that lasted forever. AndI noticed every Spring she gets a cough that lasts forever.
We have also tried homeopathic remedies with the Rituxin. I used a Homeopath, not sure if it actually helped but she is still doing good, so I figured it didn't hurt.
Her last treatment was early October 2010, so we have been very fortunate. I would definately do it again. Hope this helps. Shauna