Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

8 TREATMENTS OF RUTUXAN ⁉️

More
7 years 6 months ago #62884 by Darby17
8 TREATMENTS OF RUTUXAN ⁉️ was created by Darby17
Two years ago I took the 4,treatments of Rutuxan , and it lasted 8 months with normal platelet levels before leveling back off.

Now, my Dr. is assigning me to take 8 treatments of Rutuxan. Has anyone taken 8 treatments, had success❓ Read any research concerning 8 treatments❓
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
7 years 6 months ago - 7 years 6 months ago #62886 by Sandi
Replied by Sandi on topic 8 TREATMENTS OF RUTUXAN ⁉️
Some people have had eight rounds of Rituxan. There are no studies that suggest that eight works any better than four do. In fact, there are studies that show that two treatments work just as well as four.
The following user(s) said Thank You: Darby17
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 6 months ago #62887 by Hal9000
Replied by Hal9000 on topic 8 TREATMENTS OF RUTUXAN ⁉️
Yea, from what I've read here, it was more like an act of frustration to raise counts when more than 4 were prescribed. Since you respond to steroids (correct?) that wouldn't be the case here. Did the doc give a reason why 8 were needed?

Seems like shorter duration remissions are often 'partial' remissions. Were counts under 100 on your first remission Darby? Also, were you taking steroids simultaneously with the Rituxan the first time too?
More
7 years 6 months ago #62888 by Darby17
Replied by Darby17 on topic 8 TREATMENTS OF RUTUXAN ⁉️
Thanks for taking your time to help me. The first time and only time I've taken Rutuxan was successful for a while. I took Predisone before the treatment but not while I was receiving the treatment and not afterwards. My platelet count went up to normal levels after the treatment was ended. I was happy about that and lasted almost 10 months.
I have been taking 60 mg Predisone , and now am leveling off before I start the Rutuxan treatment. No, I didn't ask my Dr. why he wanted me to receive 8 . I'm usually more thorough, but I am glad he wants to try again. He did say this plan has been successful in my situation.
  • mrsb04
  • Offline
  • 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.
More
7 years 6 months ago #62889 by mrsb04
Replied by mrsb04 on topic 8 TREATMENTS OF RUTUXAN ⁉️
As far as I know UK protocol is 4 treatments
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
7 years 6 months ago #62890 by Sandi
Replied by Sandi on topic 8 TREATMENTS OF RUTUXAN ⁉️
Protocol is four here too, and the only reason four treatments are done is because that is the protocol for lymphoma. When studies were done on ITP patients, they found that two worked just as well as four. Eight is overkill and there is no way to actually know if eight is better. I did four rounds the first time (it lasted a year) and only one round the second time which has given me 13 years of remission. If I'd had eight rounds, I would have said, "Oh yeah, eight works so much better"! Sometimes there is a better response with the second round, but less is always better.
The following user(s) said Thank You: Darby17
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 6 months ago #62897 by Hal9000
Replied by Hal9000 on topic 8 TREATMENTS OF RUTUXAN ⁉️
Ok. A normal count remission sounds great. Here is something you might be interested in and is why I asked about steroids during treatment.
williams.medicine.wisc.edu/ld_ritux_dex_itp.pdf
It's been awhile. As I recall, there is an improvement in remissions/responses when Dex is co-administered. The time to response (TTR) is improved as well. Yours took a month to rise before? A low dose of Pred all the way through treatments might have a similar affect. But the disadvantage is possible increased adverse event - due to the added immune suppression. On re-reading (near end), it looks like they got adverse events down by lowering the dose of Rituxan.

I know of nothing which refutes or supports 8 treatments. If your Doc has had good experience with it, sounds great to me.

If you're still weary, might double check his thinking. Doctors do make mistakes. Might ask him something like 'you've had longer remission with 8 treatments'. This wording confirms the association between remission length and treatment number - and not the possibility of a remission and treatment number. In your case it is reasonable to expect another remission. The desired goal is a longer remission.

If you're starting next week, good luck!
The following user(s) said Thank You: Darby17
More
7 years 6 months ago #62899 by Darby17
Replied by Darby17 on topic 8 TREATMENTS OF RUTUXAN ⁉️
Thank you so much for all this info. It is reassuring to be able to talk to people who have found research to back up their opinions. I definitely will question my Dr. concerning the 8 treatments . It makes sense for a longer remission . It seems to work with Predisone when the doses were greater by themselves.
More
7 years 6 months ago #63057 by Darby17
Replied by Darby17 on topic 8 TREATMENTS OF RUTUXAN ⁉️
Ok, had my second Rutuxan treatment today. Thank goodness, no problem, but tonight I feel weak. Do you guys feel weak after a treatment?
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
7 years 6 months ago #63077 by dru
Replied by dru on topic 8 TREATMENTS OF RUTUXAN ⁉️
I always feel bad after a treatment, the combination of pre-meds I get plus extra fluid load I think causes it for me.