Rituxan repeats

[mrtmeo]

Has anyone not gone into remission on Rituxan and got another treatment of Rituxan and went into remission?

[WG mom]

My daughter had rtx infusions in August and is not yet in remission. Her doc wants to wait until February and begin another series if she still is not in remission. In the interim, her prednisone had been reduced by 30mg over the same four month period. It will be reduced 1 mg a month for the next several months (assuming she responds positively). It's probably too optimistic to think remission will be achieved in the next two months, but we can hope. Otherwise, she'll go ahead with another series. My understanding is that it is typical to need more than one series.
Hang in there...

[me2]

I've not gone into remission after several Rituxan treatments and Methotrexate maintenance. I have slowly improved and have now reduced my prednisone to 10mg - the lowest I've been in a very long time.

[mrtmeo]

My daughter had rtx infusions in August and is not yet in remission. Her doc wants to wait until February and begin another series if she still is not in remission. In the interim, her prednisone had been reduced by 30mg over the same four month period. It will be reduced 1 mg a month for the next several months (assuming she responds positively). It's probably too optimistic to think remission will be achieved in the next two months, but we can hope. Otherwise, she'll go ahead with another series. My understanding is that it is typical to need more than one series.
Hang in there...

Hi WG mom,
I sure hope the next series puts her in remission.
Is she on any other immune suppressant?

[mrtmeo]

I've not gone into remission after several Rituxan treatments and Methotrexate maintenance. I have slowly improved and have now reduced my prednisone to 10mg - the lowest I've been in a very long time.

Hi me2,
How long has it been since your first Rtx treatment?

[morningsunshine]

Hi me2,
How long has it been since your first Rtx treatment?


Hi there,
I'm in the same boat. I had 4 infusions from May-June. It's been 7 months and I still am not in remission. In spite of that, I saw nearly immediate results from the RTX infusions (could also have been from high-dose prednisone) and I'm doing much better though and I think I'm nearly at remission. Meds include: 5 mg pred daily (yay!!) and 20mg MTX weekly.

I'm seeing my nephrologist on Friday and my rheumatologist on Monday. I'm going to ask them if it's time for another RTX infusion. My Kidney Dr. wants to wait until my CD 19+ B cells return and then do another infusion. My Rhematologist wants to wait and see if the new B cells are normal--if I flare, then we know they're not, and can do another round of RTX.

I found this study that recommends fixed-interval RTX infusions for maintenance: Rituximab for remission maintenance in relapsing antineutrophil cyt... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22729997)

I feel like this is all so new and still somewhat experimental...I just want to pick the right course to reach & stay in remission!

[mrtmeo]

Hi there,
I'm in the same boat. I had 4 infusions from May-June. It's been 7 months and I still am not in remission. In spite of that, I saw nearly immediate results from the RTX infusions (could also have been from high-dose prednisone) and I'm doing much better though and I think I'm nearly at remission. Meds include: 5 mg pred daily (yay!!) and 20mg MTX weekly.

I'm seeing my nephrologist on Friday and my rheumatologist on Monday. I'm going to ask them if it's time for another RTX infusion. My Kidney Dr. wants to wait until my CD 19+ B cells return and then do another infusion. My Rhematologist wants to wait and see if the new B cells are normal--if I flare, then we know they're not, and can do another round of RTX.

I found this study that recommends fixed-interval RTX infusions for maintenance: Rituximab for remission maintenance in relapsing antineutrophil cyt... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22729997)

I feel like this is all so new and still somewhat experimental...I just want to pick the right course to reach & stay in remission!

Hi Morning,
I wish my mom's drs would test CD19 b cells.
rtx works pretty well for weg's folks, but I know of no one that has MPA and did rtx.
rtx does even better for weg's relapses.
I don't know if my mom should do another round of rtx or stick with the mofetil to see if her renal function improves.
She didn't respond well to the rtx which was a surprise to both nephrologist and rheumy.
The rheumy said that doing the 2 doses of rtx is far better than the 4 doses.
B cells typically start coming back starting around the 6th month, so many will do the repeat at 6 months.
I sure hope u get to remission soon!

[morningsunshine]

You mom is so lucky to have you, mrtmeo. I always see you asking great questions here in the forums and it seems like you're very involved in helping her recover. Does she have WG or does she have MPA or is it still TBD?

Interesting about 2 doses of RTX...I've read 4 doses as the usual treatment in many studies. Maybe the two dose approach is specific to MPA?

The B-cell test I'm getting (about once every 2 months) is called T + B-Lymphocyte Differential and the results that my doctors always look at are:
Abs. CD 19+ Lymphs
% CD 19+ Lymphs

Perhaps she could ask for the T + B-Lymphocyte Differential test by name? It might be good info for you to have.

I'm keeping your mother in my thoughts! Fingers crossed that you find a treatment that works very soon.

[me2]

Hi me2,
How long has it been since your first Rtx treatment?

Well, I'm sort of living in a fog of several years of illness and treatments. I'd have to look it up but it is something like a year and a half. Probably longer.

[me2]

Hi morning,
I'm thinking along the same lines as mrtmeo that 2 infusions is the current protocol for Rituxan. I'm surprised you are getting four. I'm assuming you get one per week for four weeks?
In the begginning they were doing four but as far as I know the current protocol is one infusion followed by one more
two weeks later.
I've done it both ways and I have to say I like doing only two if for no other reason I only get that horse dose of solumedrol two times.

[mrtmeo]

You mom is so lucky to have you, mrtmeo. I always see you asking great questions here in the forums and it seems like you're very involved in helping her recover. Does she have WG or does she have MPA or is it still TBD?

Interesting about 2 doses of RTX...I've read 4 doses as the usual treatment in many studies. Maybe the two dose approach is specific to MPA?

The B-cell test I'm getting (about once every 2 months) is called T + B-Lymphocyte Differential and the results that my doctors always look at are:
Abs. CD 19+ Lymphs
% CD 19+ Lymphs

Perhaps she could ask for the T + B-Lymphocyte Differential test by name? It might be good info for you to have.

I'm keeping your mother in my thoughts! Fingers crossed that you find a treatment that works very soon.

Hi Morning,
My mom doesn't understand her disease at all and I try to explain everything including all the research I do and her blood tests.
She has MPA and had one 1.5gm infusion of cytoxan, skipped a week and 4 infusions 1 week apart of rtx, but didn't have a good response on the kidney and lung function.

Her Rheumy, that we just saw on Dec 3rd, said that the 4 infusions is the old way and consults with Carol Langford regularly.
The 2 infusions 2 weeks apart is what he said is the standard now.
I assume the heavy dosings may work faster, but not sure.
I have alot more questions now and should make another appointment with him.
I will ask her nephrologist to see if he will do the T + B-Lymphocyte Differential test and if he doesn't, I'll ask her rheumy.
Thanks for your thoughts!

[Eric54]

My rhum has me completing 4 ( once per week ) and then we discussed maintenance at 6 months. So far 3 complete. One more to go.


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[me2]

Well, I just spent some time surfing for information on Rituxan protocol. It seems there are conflicting answers to this question. I think one would have to ask their doctor about the rational for whatever protocol they are following.
Perhaps I am on two doses spaced two weeks because I have had so much previous exosure? I dunno. I can't find an article comparing and discussing the two protocols. I do know my doc has told me he is concerned about me being over exposed to Rituxan treatments and being suseptable to infection.

I found articles that described both protocols. Dosing & Administration | 6-Month Interval | Rituxan® (rituximab) RA (http://www.rituxanforra-hcp.com/dosing/6-month-interval)

[Eric54]

The info you are referring to is for RA treatments. Click the gpa tab it states the following:

Rituxan should be administered each week for 4 weeks1
Following methylprednisolone infusions, oral prednisone 1 mg/kg/day is recommended (not to exceed 80 mg/day and tapered per clinical need)1


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[Eric54]

Either way I say leave it to your doc to help decide. It's good to be informed, but, sometimes this information isn't correct for our specific health reasons outside of this disease etc...


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[me2]

Yeah, you are right that the link is not for Wg, I picked it because of the protocol- and because I just did 14 hours of driving over the Cascade mountains pulling a trailer and was tired- LOL. Not my best shot at the subject.

There was a great discussion on this topic , on a Forum, in a Galaxy far , far away ...

With such luminaries as Sangye, Al, Aewaustin, Phil, Elena, Freaky, Chris G, Jaha, KathyB, Kami, DRZ, Meridith, Palmyra, and some doofus calls himself "me2" that keeps interrupting them.

http://www.wegeners-granulomatosis.com/forum/medication/2309-2-vs-4-rtx-infusions-thoughts.html

[mrtmeo]

My rhum has me completing 4 ( once per week ) and then we discussed maintenance at 6 months. So far 3 complete. One more to go.


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Hope it is working well for you!

[mrtmeo]

Well, I just spent some time surfing for information on Rituxan protocol. It seems there are conflicting answers to this question. I think one would have to ask their doctor about the rational for whatever protocol they are following.
Perhaps I am on two doses spaced two weeks because I have had so much previous exosure? I dunno. I can't find an article comparing and discussing the two protocols. I do know my doc has told me he is concerned about me being over exposed to Rituxan treatments and being suseptable to infection.

I found articles that described both protocols. Dosing & Administration | 6-Month Interval | Rituxan® (rituximab) RA (http://www.rituxanforra-hcp.com/dosing/6-month-interval)

Hi me2,
I haven't seen any data on accumulating doses of RTX anywhere in the literature.
Have you found anything about it?
Did u ask your Dr why he had a concern regarding it?

[MikeG-2012]

My rhum has me completing 4 ( once per week ) and then we discussed maintenance at 6 months. So far 3 complete. One more to go.



That is what my first doses were back in November of last year. I've had 2 2 weeks apart at 6 month intervals since then.

[mrtmeo]

Hi morning,
I'm thinking along the same lines as mrtmeo that 2 infusions is the current protocol for Rituxan. I'm surprised you are getting four. I'm assuming you get one per week for four weeks?
In the begginning they were doing four but as far as I know the current protocol is one infusion followed by one more
two weeks later.
I've done it both ways and I have to say I like doing only two if for no other reason I only get that horse dose of solumedrol two times.

Hi me2,
The horse dose of solumedrol is a really good point.
Only getting twice vs 4 times saves on the adrenals and muscle cramps.
However, when they gave my mom the 4 infusions, she got dexamethasone instead of salumedrol.
Not sure why.

[Ruotsi1]

If I am understanding correctly there are two different studies of RTX dose. One supports 2 doses and the other 4 doses. My cleveland doc(Villa-Forte) recommended 2 doses, and my rheumy here at home wanted 4 doses. I know one of the studies is the RAVE study, but can't remember the other study. Either way, the overall dose of Rituxan is about the same.

[me2]

Hi mrtmeo,
I haven't seen anything in the literature on the cumulative effects of Rituxan use either. I think a lot of the discussion between practitioners we are not privy to.

Perhaps my doc is thinking of what Sangye said in the discussion in the link up above- "Dr Seo said that rtx seems to work better/ longer the more times you get it, but he also has said that it may stop working if you get too much"

Not only do you get cumulative exposure to Rituxan but you get cumulative stress on the body (and mind) from Solumedrol. Continued hammering of the immune system is not really good. I don't completely understand the dangers of Rituxan use but I do understand the basics enough to know that we only want to use it just as much as is needed- and not more.

I have seen the thinking on this evolve since it was first used and I see it continuing to evolve. Just as I saw an evolution in Cytoxan protocol. 36 years ago I was put on Cytoxan for two years. This is not common practice anymore.

It is my understanding that the more Rituxan you use the more risk you have of serious infection. My doctor has expressed fear to me of using Rituxan more than just what is necessary and me getting a serious infection.

As a last comment on the evolution of treatment. Currently , my six month "booster shot" of Rituxan is one dose. I do not have any sense that I would be doing better if I had more doses- this is just my hunch.

[mrtmeo]

Hi mrtmeo,
I haven't seen anything in the literature on the cumulative effects of Rituxan use either. I think a lot of the discussion between practitioners we are not privy to.

Perhaps my doc is thinking of what Sangye said in the discussion in the link up above- "Dr Seo said that rtx seems to work better/ longer the more times you get it, but he also has said that it may stop working if you get too much"

Not only do you get cumulative exposure to Rituxan but you get cumulative stress on the body (and mind) from Solumedrol. Continued hammering of the immune system is not really good. I don't completely understand the dangers of Rituxan use but I do understand the basics enough to know that we only want to use it just as much as is needed- and not more.

I have seen the thinking on this evolve since it was first used and I see it continuing to evolve. Just as I saw an evolution in Cytoxan protocol. 36 years ago I was put on Cytoxan for two years. This is not common practice anymore.

It is my understanding that the more Rituxan you use the more risk you have of serious infection. My doctor has expressed fear to me of using Rituxan more than just what is necessary and me getting a serious infection.

As a last comment on the evolution of treatment. Currently , my six month "booster shot" of Rituxan is one dose. I do not have any sense that I would be doing better if I had more doses- this is just my hunch.

Hi me2,
Good points.

I agree with the one dose for maintenance if it works, but haven't heard any drs here doing that.
I would assume that anything that we repeatedly take would cause the body to try to overcome it some how.
Perhaps, this might be what can happen if too many repeated Rtx infusions are used?

I know of people that had cancer repeadly and after a few chemo's the drs would say there is nothing more we can do.
This makes me wonder if the same issue with cytoxic drugs reach a type of tolerance by the body's overcoming its effects, but not sure.

I was reading some literature that mentioned with Weg's the T cells permanently activate causing the repeated flares and was wondering if anyone else knows more?

[mrtmeo]

I found this regarding our body creating antibodies to Rituximab.

"The cases were treated with intravenous infusions of rituximab once a week 2 times (3 cases) or 4 times (6 cases). To prevent formation of antibodies to rituximab, mycophenolate mofetil (5 patients), azathioprine (1 patient), or a short course of Cyc (2 patients) were added or allowed to continue."

Rituximab (Rituxan) (http://www.aetna.com/cpb/medical/data/300_399/0314.html)

[mrtmeo]

You mom is so lucky to have you, mrtmeo. I always see you asking great questions here in the forums and it seems like you're very involved in helping her recover. Does she have WG or does she have MPA or is it still TBD?

Interesting about 2 doses of RTX...I've read 4 doses as the usual treatment in many studies. Maybe the two dose approach is specific to MPA?

The B-cell test I'm getting (about once every 2 months) is called T + B-Lymphocyte Differential and the results that my doctors always look at are:
Abs. CD 19+ Lymphs
% CD 19+ Lymphs

Perhaps she could ask for the T + B-Lymphocyte Differential test by name? It might be good info for you to have.

I'm keeping your mother in my thoughts! Fingers crossed that you find a treatment that works very soon.

Hi Morning,
I asked my mom's nephrologist to do the test but he never responded to my email.
I asked her rheumatologist and he said he doesn't know how to do the test but mayo does it and that I should ask her nephrologist to do it.