Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68506

  • alijacks9
  • Offline
  • Dx: 2006 Dex pulse about Q3-4 weeks for a few months. WinRho x 3. Splenectomy 2007: 18 months of tx free remission IVIG followed by Rituxan 2008: lasted 10 years! IVIG followed by Rituxan 4/2018 lasted til now 2/2020. Currently: restarting Rituxa
  • Posts: 5
  • Thank you received: 0
Hi there-
My first Rituxan series was in 2008 which lasted 10 years of tx free remission with counts in 300s. In April 2018 my plts dropped to 6 and after raising them with IVIG/steroids I completed my 2nd Rituxan series. This month (almost 2 years from previous Rituxan) in Feb 2020 plts dropped again to 7. After raising my plts I've restarted Rituxan this week. I'm looking for literature/studies or personal experiences of others who have had success with Rituxan more than 2 -3 times. If so I'm curious to know if the length of remission time in between the multiple Rituxan series increased/decreased or stopped working? I'm wanting to know if anyone had positive responses for the first 2 and then became non-responsive/refractory. Thanks Alie
Alie

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68517

  • JJ
  • Offline
  • Posts: 183
  • Thank you received: 63
I think you'll find it's quite rare for doctors to want to give Rituxan more than twice for ITP. Many won't even do it more than once, so you may not find people with the experience you are looking for.

Rituxan kills off the B white cells, and these cells are responsible for making antibodies. Occasionally after Rituxan the B cells never come back and the person is left not being able to make antibodies ever again. So it's a bit of a risky drug to play with if there are other alternatives.

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68523

  • alijacks9
  • Offline
  • Dx: 2006 Dex pulse about Q3-4 weeks for a few months. WinRho x 3. Splenectomy 2007: 18 months of tx free remission IVIG followed by Rituxan 2008: lasted 10 years! IVIG followed by Rituxan 4/2018 lasted til now 2/2020. Currently: restarting Rituxa
  • Posts: 5
  • Thank you received: 0
JJ- I disagree as the side effects from long term steroid use has a lot more extreme and long term consequences versus Rituxan every few years. And B cells do come back.
Alie

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68526

  • JJ
  • Offline
  • Posts: 183
  • Thank you received: 63

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68528

  • alijacks9
  • Offline
  • Dx: 2006 Dex pulse about Q3-4 weeks for a few months. WinRho x 3. Splenectomy 2007: 18 months of tx free remission IVIG followed by Rituxan 2008: lasted 10 years! IVIG followed by Rituxan 4/2018 lasted til now 2/2020. Currently: restarting Rituxa
  • Posts: 5
  • Thank you received: 0
Thanks for the article. However the article is pointing out a singular case and its still not proven this particular case is a result of the Rituxan. With that said the article's main point here is the importance of monitoring IgG levels before and after Rituxan so they can be "replaced" in cases of severe hypogammaglobulinemia. In other words.... IVIG treatment. But no mistake about it ... long term steroid use will impact your immune response far more than a few Rituxans. Not to mention that not having a spleen is probably worse. However, the fact that my first Rituxan series gave me 10 years of zero platelet issues, zero treatments, and I was able to have 2 healthy pregnancies without any abnormal platelet counts was the healthiest decision I have ever made. If I hadn't done the Rituxan I would've continued steroids off and on for 10 years. And that would've had many health related consequences for sure.
Alie

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68529

  • JJ
  • Offline
  • Posts: 183
  • Thank you received: 63
That's right, the treatment for when the B cells don't come back is immunoglobulin. I finished rituximab December 2019 and do 10g subcutaneous immunoglobulin each week. Maybe my B cells will come back this year. I wouldn't do long term steroids either. Romiplostim is my drug of choice for ITP. Nobody's saying don't use it, just be aware of possible consequences and think about alternatives too.

Here's more...

academic.oup.com/qjmed/article/107/10/821/2890483

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68531

  • midwest6708
  • Offline
  • ~ Janet ~ Diagnosed Sept. 08
  • Posts: 375
  • Karma: 2
  • Thank you received: 82
To get back to your original question...
It's unlikely you'll get an experienced response here. And because Rituxan is not an FDA approved treatment for ITP, it will be hard to find online studies, either.
But I did come up with a published article on the subject of ongoing B-cell depletion using repeated courses of Rituxan for the treatment rheumatoid arthritis.
www.ncbi.nlm.nih.gov/pmc/articles/PMC3392126/
In it, the author states that "Rituximab is now approved with repeat dosing at 16–24-week intervals. Upon cessation of drug, the time to relapse varies yet seems specific for each patient [7]. Many relapse if treatment is not given for 6–12 months, but some clinical trials have noted averages of 20 months between retreatment [19]."
The time between the need for retreatment seems undoubtedly a case-by-case matter, no matter the disease involved.

I completely understand how your success with the drug would make you a fan. And I think that the rare case of a person - or even 20 people - whose B cell production was permanently shut down shouldn't deter a patient who believes the drug's benefits outweigh the negatives of the other treatments. On the other hand, I am painfully aware that side effects don't always happen to the "other guy." I had just one and a half infusions (not courses) of Rituxan that landed me in the hospital for 6 days with serum sickness. Plus, it reactivated a virus in my system that destroyed 70% of my right vestibular nerve. The damage left me with permanent vertigo that has destroyed my quality of life.

All that said, I would hope we can all agree that no treatment is the best treatment for each of us individually, and that we should try our best not second guess the decisions that others make for themselves.

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68558

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245


...If so I'm curious to know if the length of remission time in between the multiple Rituxan series increased/decreased or stopped working?

FWIW, from user reports I've read on this forum, Rituxan remission time is normally degenerative. That is, it decreases and stops working. One exception comes to mind, that I think, has had several consecutive and periodic remissions. That would be user 'Dru'. Here are her posts. LOL, she may be the queen of Rituxan remissions.
pdsa.org/discussion-group/search.html?searchuser=dru&exactname=1&searchdate=all&order=dec&childforums=1&limit=30&start=0

In scanning through my notes.
Might look at user 'belydncrck01'. I have in my notes that they had several 6 mo long remissions. Don't have how many listed.
And user 'Sophie'. She had 4 remission with each 1 to 2 years long. Each was progressively shorter.
And user 'Dean'. Had multiple remissions in my notes.
And user 'DanC33'. Had multiple steroid and Rituxan remissions.

I'm wanting to know if anyone had positive responses for the first 2 and then became non-responsive/refractory. Thanks Alie

Since I don't have the number of remissions in my notes, there is probably some of that in the above list. Just off hand. One or two positive responses followed by no response is probably what happens most often. As you already know, each of these positive responses can be many years in duration.

IMHO, if one thinks about this in terms of EBV overtaking one's immune system at its own rate of opportunity, this would be consistent.

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68576

  • RodgerMac
  • Offline
  • It's not a bug, it's a feature
  • Posts: 37
  • Thank you received: 1
I have to disagree. I’m on my fifth Rituxan treatment. The first couple only lasted maybe 18 months. My last one is in it’s third year count is still 121 last month. Although it’s a downward trend from my 185 high. I even wrote Genentech, they were less than helpful with an answer. Telling me to ask my doctor. Hope you do well.
The following user(s) said Thank You: alijacks9

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68577

  • alijacks9
  • Offline
  • Dx: 2006 Dex pulse about Q3-4 weeks for a few months. WinRho x 3. Splenectomy 2007: 18 months of tx free remission IVIG followed by Rituxan 2008: lasted 10 years! IVIG followed by Rituxan 4/2018 lasted til now 2/2020. Currently: restarting Rituxa
  • Posts: 5
  • Thank you received: 0
Agree to disagree... I will do Rituxan for as long as I have a response despite possible and very low chances of infections in relation to B-cell depletion. I'm sure someday I will have to think of using Promacta but those agents can increase MDS and Leukemia and being an Oncology RN I'm more "comfortable" with the
other B-cell risks but I've never had a problem there. Not to mention that the studies you cited aren't applicable to my situation. But My original post did not ask for "opinions" regarding my treatment with Rituxan but rather for those with a "Good response to multiple Rituxans, how long was each response?"
Alie

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 9 months ago #68583

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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
  • Posts: 1901
  • Karma: 7
  • Thank you received: 546
I've never tried Rituximab. As a nurse I am worried about side effects. I've cared patients who have used it to suppress vasculitis which it did but they were full of cold permanently which put me off. However that is not to say I would never try it. I may have to one day. It would be preferable to a splenectomy.

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 8 months ago #68653

  • Sophie
  • Offline
  • Posts: 12
  • Thank you received: 3
Hey! Hal9000 is right, I have gotten multiple rounds of rituximab (I can’t imagine many more ITP patients have gotten more “vitamin R” than I have.) I’m still kinda on it. I've lived more of my life with ITP than without it and have tried almost all the treatments out there (IVIG, prednisone, rituximab, splenectomy (x2), n-plate, Promacta, Imuran, Cellcept). I’ve had more success with the immunosuppressive approach.

Here’s my Rituximab history (not including other treatments throughout my 18 year history)

Round 1: Jul 2005 (3 doses 375 mg/m2) kept my count normal until Jan 2008 (30 months)
Round 2: Oct 2008 (4 doses 375 mg/m2) kept me normal until Feb 2010 (16 months)
Round 3: Sep 2010 (4 doses 375 mg/m2) counts were good until Jan 2012 (16 months)
Round 4: Jul 2015 (4 doses 375 mg/m2) counts were good until Aug 2016 (13 months)
Round 5: Sep 2016 (4 doses of 100 mg) counts good until Jul 2017 (10 months)
Round 6: Aug 2017 (this is when my hematologist got creative, we did 4 weekly doses of 100 mg and then 1 maintenance dose of 100 mg every 6 months) my counts were great until Apr 2019 when I decided I didn’t want to do the maintenance dose anymore and I tanked the month after I would have gotten it (20 months)
Round 7: Apr 2019 ( 4 weekly doses of 100 mg with 100 mg maintenance every 6 months): currently on this and my counts are great, next maintenance is in May (11 months and counting)

I feel like I tolerate it pretty well. I usually have an infusion reaction with the first round or maintenance dose but I’m quicker to call the nurses so it’s pretty mild. I feel pretty crummy and fatigued for up to a week after. I think I’m more prone to catch bugs and it takes me longer to get over them but do I know for sure it’s due to rituximab? Not really, it could be the splenectomy, bad luck, stress, whatever. I am able to work full time

Honestly, I’m happy to have a hematologist who is willing to think outside the box. What I’ve really liked about rituximab is when it’s working, it’s like I don’t have ITP. My counts are normal (usually even a little high), I don’t have to be worried about every bump or bruise. When it stops working, I usually know it before my check in labs (and might do them a little earlier to be sure)
The following user(s) said Thank You: Hal9000, Carcamoc10, sonyalea

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 8 months ago #68693

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
Yes Janet.
It is not well known that, like Prednisone, Rituxan can precipitate an outbreak of Shingles. Or, that the drug can leave one with temporary neutropenia - which is reactivation of Parvovirus B19. Some risky stuff. I'm reminded of DrBean's thread and his doctor prescribing an antiviral. Perhaps a bit of Acyclovir is appropriate during Rituxan treatments too. Who knows?

Sophie sounds like you are the queen of Vitamin R., LOL.
Your doctor going to a single lower dose as a booster is interesting. I think I've discussed with Dru the subject of some sort of periodic boosting before. As I recall, Dru was VERY sensitive to just about everything. Her first IVIG treatment lasted 3 months. Also, counts would go up on the first of the four Rituxan treatments. What I suggested to her was a Dex pulse every 6 months. In hindsight, that probably won't work. Not powerful enough. But thought I'd mention it anyhow.
Thanks for taking the time to post your history. It is an interesting read and has valuable information for others.

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 1 year 6 months ago #69140

  • Jcallahan
  • Offline
  • Posts: 21
  • Thank you received: 2
I haven’t logged into this site in quite awhile but was planning to ask the same question about multiple rituxan response. I was diagnosed in 2015 and had rituxan in January 2016. That put me in a 3 year remission. Had 4 rounds again in June 2019 and am slowly seeing declining numbers. Earlier this month I was at 148,000 down from about 250,000. May need another treatment in the future. My hematologist is suggesting 4 rounds of treatment with a maintenance every 6 months or so. I see someone else in this tread is doing the same. Overall I seem to tolerate well with tiredness and achy feeling the first day of the infusion. I would love hear other rituxan stories that have been somewhat successful. I am an anxious ITP patient....

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 5 months 2 weeks ago #71415

  • jessmeyer
  • Offline
  • Posts: 46
  • Thank you received: 10
I came here to ask the same question. I was first diagnosed with ITP in Aug 2012. I did four rounds of Rituxan in Jan 2013, and I was in remission until Aug 2018. I did four rounds in Aug/Sept 2018, and I was in remission until today (June 2021). Frustrating that my remission time frame is getting shorter, but I tolerate it fairly well. I take Dexamethazone in pulses at the same time to inflate my platelet count until the Rituxan kicks in. Probably the worst side effect is that I get horrendous thrush, to the point that even drinking water tastes disgusting, and no meds help keep it at bay. I have to game plan treatment with my Hemo tomorrow, but I suspect I’ll do the same treatment again.

It is interesting the maintenance approach to Rituxan. I wonder if my remission time keeps getting shorter, that approach will be one to try.

I also have CVID, so my immunoglobulins are not a factor in Rituxan - as they are always low.

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 5 months 2 weeks ago #71420

  • momto3boys
  • Offline
  • Posts: 508
  • Karma: 2
  • Thank you received: 139

I came here to ask the same question. I was first diagnosed with ITP in Aug 2012. I did four rounds of Rituxan in Jan 2013, and I was in remission until Aug 2018. I did four rounds in Aug/Sept 2018, and I was in remission until today (June 2021). Frustrating that my remission time frame is getting shorter, but I tolerate it fairly well. I take Dexamethazone in pulses at the same time to inflate my platelet count until the Rituxan kicks in. Probably the worst side effect is that I get horrendous thrush, to the point that even drinking water tastes disgusting, and no meds help keep it at bay. I have to game plan treatment with my Hemo tomorrow, but I suspect I’ll do the same treatment again.

It is interesting the maintenance approach to Rituxan. I wonder if my remission time keeps getting shorter, that approach will be one to try.

I also have CVID, so my immunoglobulins are not a factor in Rituxan - as they are always low.

Have you talked to your hematologist about other short-term options besides Dexamethasone? That is a horrific steroid with terrible side effects. What are your counts running right now? Are you having active bleeding? It's great that Rituxan works well for you, but I can understand your reluctance to take the steroids. Are you responsive to Prednisone?

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 5 months 2 weeks ago #71422

  • jessmeyer
  • Offline
  • Posts: 46
  • Thank you received: 10
I am not responsive to prednisone. With Dex, last time I did three pulses (4 days on and 10 days off). The biggest side effects for me were thrush and the highs / lows - on day 4 of the pulse I would basically be awake for 24 hours straight and by day 9/10 of the “off” I would be exhausted and could easily sleep 12+ hours straight (which is super unusual for me).

The last time my ITP came back, my count was 0. I was told Dex or hospital, and I choose Dex. Today, my count was 16. So, it is possible my Hemo will just say Rituxan and no Dex. My normal is 300-350. For the past 10 years, I have either been normal or pretty low, with no hovering in between.

Do you know of any other short term options I should look into?

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 5 months 2 weeks ago #71429

  • momto3boys
  • Offline
  • Posts: 508
  • Karma: 2
  • Thank you received: 139

I am not responsive to prednisone. With Dex, last time I did three pulses (4 days on and 10 days off). The biggest side effects for me were thrush and the highs / lows - on day 4 of the pulse I would basically be awake for 24 hours straight and by day 9/10 of the “off” I would be exhausted and could easily sleep 12+ hours straight (which is super unusual for me).

The last time my ITP came back, my count was 0. I was told Dex or hospital, and I choose Dex. Today, my count was 16. So, it is possible my Hemo will just say Rituxan and no Dex. My normal is 300-350. For the past 10 years, I have either been normal or pretty low, with no hovering in between.

Do you know of any other short term options I should look into?

That's too bad that you aren't responsive to Prednisone. It would have been a convenient 3-4 week way to fill the gap until your Rituxan kicks in. I know that there are people who have a very quick response to things like Eltrombopag/Promacta, Fostamatinib/Tavalisse, Romiplostim/NPlate, and others. Since you are talking about a month to wait and you aren't having active bleeding, maybe it would be worth getting on one of those ASAP to see if you can get a quick response to get you out of your low counts. Even if you could get to 30k, that would be good enough to wait it out without the horrible dexamethasone side effects.

Maybe something to try, but often insurance companies aren't so quick to approve those medications, so it may not really be an option to start any of those with a quick turnaround time.

Have you ever had IVIg? Most people can get a two or three week spike from one infusion, and that might be enough to get you over the hump while you wait for Rituxan to kick in.

Best of luck, and I hope you can get another good remission out of another round!

Please Log in or Create an account to join the conversation.

If Good response to multiple Rituxans, how long was each response? 5 months 2 weeks ago #71434

  • jessmeyer
  • Offline
  • Posts: 46
  • Thank you received: 10
I really appreciate your responses.

My Hemo wrote me a script from Dex, but we agreed I would not take it unless I had an active bleed, the bruising got worse, or another symptom developed. Labs on Monday and revisit from there. So, that is new and positive. Obviously, it will be a low key weekend for me.

I haven’t tried most of the what you listed, but I have had IVIG. That is an interesting idea. It inflated my platelets for about a week, but I don’t recall any side effects. The downside would be two days per week to infuse, and the impact that would have on my work life. I am going to look into those other drugs and chat with my Hemo.

Thank you!

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo