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Rituxan without a spleen?

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8 years 3 months ago #59436 by plopper
Rituxan without a spleen? was created by plopper
Hello everyone,
I've been away for a long time, but I'm back with a question for you all.
I had a splenectomy in 1995 - had a long remission, then a relapse in 2003, then I would get periodic remissions from 1-2 years with Pred and IVIG or Pred and . 6 weeks of NPlate.

Now I'm getting monthly IVIG for my IGG and IGm deficiencies. The dosage is for immune deficiency, so not as high as what they give for ITP. But man, those monthly IVIG infusions have keep me from anything sinus related, which has been great.
My platelets raise for two weeks on that small dose but then for the past couple of months, they've gotten low for a couple of weeks, so we've supplemented with Prednisone. Now I'm officially having more problems from the Pred than the low platelets - stomach problems, bad. I'm waiting on a Celiac test, so that could be a factor, but I know no matter what is wrong with my stomach, the Pred is doing nothing good for it.

My hema wants to try Rituxan next. My old hema said I couldn't do Rituxan because I had no spleen, but this hema was fuzzy on that rule.

Has anyone had Rituxan after a splenectomy and had it help? I'm feeling like perhaps another round of NPlate might be a better choice, although last time NPlate put me on such a roller coaster over a million for a couple of weeks, scared the crap out of me, so I'd be super hesitant to do it again, but I want off the Pred!
Please advise.
Thanks,
Jill

(*Waves to Sandi - hi stranger, how are you?)
  • 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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8 years 3 months ago #59437 by Sandi
Replied by Sandi on topic Rituxan without a spleen?
Jill! I'm so happy to hear from you, but sad for the reason. How have you been other than the medical problems?

Rituxan can be used after splenectomy, but of course the added immunosuppression is a risk. I have seen asplenic patients have long-term remission after Rituxan, so you'd have a good shot at it. Do you have CVID? If so, there is another reason that Rituxan might be a concern as far as being immunosuppressed. There is also the option of trying low dose Rituxan which seems to work just as well as the regular dose according to studies. Tough decision.

Have you thought about trying Promacta? Maybe you'd have better control over your counts than you did with N-Plate. Start with a low dose and get counts to a safe level, not a normal one.
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8 years 3 months ago #59440 by CindyL
Replied by CindyL on topic Rituxan without a spleen?
Hi Jill!
I had my spleen out in 2006 and did Rituxan in 2011. I've been in remission since then. Does this help?
Nice to hear from you!
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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8 years 3 months ago #59484 by D.Mann
Replied by D.Mann on topic Rituxan without a spleen?
Cindy what other ITP treatments did you try prior to removing your spleen? I have seen a couple of posts like yours and am curious. I have had Rituxin and reaction was very mild. Currently on Promcta and it is doing its job for now. My hemo wants me to consider removing my spleen this year. I fear is that doesn't work either and I'm back on meds everyday. I am guessing from your dates the spleen worked for a while then counts dropped and you did Rituxin. Thanks in advance for sharing.
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8 years 3 months ago #59487 by CindyL
Replied by CindyL on topic Rituxan without a spleen?
At time of diagnosis, I was put on prednisone. The whole first year I did weekly IVIG's. I did do one or two doses of Winroh, too. When I found this site, I printed out the treatment options and took it to my hema appointment. He went over it with me and told me why he wouldn't recommend them. If I remember right, N-plate and promacta were just new or not even in use yet. The splenectomy worked for a month or so and after that I was on different doses of pred. If counts got low enough, I did IVIG. Sandi had been talking about Rituxan and I mentioned it to my doctor. At the time, he was only using it for his cancer patients. But there were 3 of us with really low counts, so he must have gotten permission for us to try it. It worked for me but not the other 2.
The following user(s) said Thank You: D.Mann
  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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8 years 3 months ago #59494 by Kelirae24
Replied by Kelirae24 on topic Rituxan without a spleen?
I got rituxan with no spleen I only got a little bit of it because I had a severe reaction and was rushed to the hospital but my counts stayed up for a few weeks pretty good considering I probably only less then a quarter of the treatment they tried it 3 more times slower but I swelled like crazy and my throat closed up so I couldn't try it again but I think it's worth a shot
The following user(s) said Thank You: D.Mann