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Rituxin datapoint

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10 years 2 months ago #52086 by russp
Rituxin datapoint was created by russp
Hope this helps. Update with a datapoint for others who might be considering Rituxin.

Diagnosed with ITP about 3 years ago. Fooled around with Prednisone for a while. It raised my platelets just fine but of course they dropped when steroid level dropped. Not a lasting solution.

Had the 1/2 dose (ie: two injection sessions) of Rituxin in Aug 2013. Remission (ie: normal platelet count) until now. For reference my count today is 14k so low but not horrifically low.

Doctor has me scheduled for full dose (ie: 4 injections) of Rituxin starting next week.

For me Rituxin was easy to take (hope will be so again) and mostly a non-event and worked great. I know it does not work for everyone (as much as 60%) but if you are worried about trying it I'd say don't and just do it.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 2 months ago #52087 by Sandi
Replied by Sandi on topic Rituxin datapoint
Russ:

Seems like Rituxan worked well for you. Why not go with the low dose again? Studies show that it works just as well as the regular dose. It's cheaper and has less toxicity.

I do think that anyone considering Rituxan should give it careful thought though. I jumped into it in 2004 and ended up with serum sickness. That reaction ended up triggering another autoimmune disorder that has been much worse than ITP. It has caused disabilities that I will struggle with for the rest of my life. This is rare, but it has also happened to a few others here.

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10 years 2 months ago - 10 years 2 months ago #52090 by russp
Replied by russp on topic Rituxin datapoint
It was those things that caused me to be scared of Rituxin and put it off. However, it seems one of the safest courses since the other paths are either surgery or the two expensive medications which are new and still have some possibly even scarier bone-marrow effects. You are right though that nothing is safe but given the alternatives.... I guess for me my choice was really: 1) do nothing (not good option), 2) surgery (splenectomy) or 3) rituxin as the insurance would not consider the rom. and nplate until you exhausted the other avenues.

Not sure why he wants to go full dose this time. Guess I'll ask him next week as to why.

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10 years 2 months ago #52093 by Rob16
Replied by Rob16 on topic Rituxin datapoint
Russ - I started a thread sometime ago on low dose rituximab research, and found a total of seven studies including a total of 199 patients who were treated according to a low dose protocol consisting of 100 mg Rituxan given in four weekly infusions, whereas the standard dose is 375 mg per square meter, that usually works out to around 700 mg per infusion. The result of each study was comparable to published results at the standard dose.

Here is where I summarized the information:
pdsa.org/forum-sp-534/7-treatment-general/27993-low-dose-rituximab-rituxan-research.html?limitstart=0#40513

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 2 months ago #52095 by mrsb04
Replied by mrsb04 on topic Rituxin datapoint
Russ

The Uk Centre I attend offers the lower dose.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 2 months ago #52097 by Sandi
Replied by Sandi on topic Rituxin datapoint
So far, N-Plate and Promacta have been proven to be fairly safe, but of course long term side effects are not yet known (not longer than 10 years, anyway). They also have a better success rate. As for insurance, that all depends on a person's plan.

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10 years 2 months ago - 10 years 2 months ago #52100 by russp
Replied by russp on topic Rituxin datapoint
I need to query the dosage. I just assumed full as he said 4 treatments while last time it was just two. Could be lower dose over 4 times. Thanks for the info as I'll check into it.

Hemo was the one today who said Rom and Nplate had a few "worries" is all but of course nothing conclusive yet.

Anycase, what studies are there on the likelihood that I will continue to get remissions with Rituxin given my first success? Have there been cases where people kept getting remissions more than twice?

Also, it sounds like I really should first ask for a JC virus test before proceeding? Don't remember if I did that last time or not...

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10 years 2 months ago #52101 by Rob16
Replied by Rob16 on topic Rituxin datapoint
"These results suggest that retreatment with standard dose rituximab induces similar responses in 75% of previously responding patients and is well tolerated."
onlinelibrary.wiley.com/doi/10.1002/ajh.21512/abstract

So, your chances are better than they were the first time, but less than 100%.
Still, a pretty good number.

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