Rituxin: retreat on schedule or with symptoms?

[dutch]

Hello,
I was curious what advice you are all receiving regarding retreatment with RTX. My son's doctor is talking about retreating on schedule (I don't know if that means one "booster" dose or the full course of 4 yet, after 6 months), possibly dependent on a rise in ANCA score, but not symptoms. I am very thankful RTX worked for my son, but fear that treating on schedule will eventually make it less effective for him. And who is to say his body can not maintain a drug free remission for a while? (My greatest hope!)
Would love to hear your input!
Thanks,
Karen

[Sangye]

It's very individual. There is no set protocol for using rtx repeatedly--none at all. Even though I have one of the most difficult types of Wegs involvement to treat (only CNS is worse), and I have a long history of it being refractory to treatment, Dr Seo didn't automatically schedule me for a repeat treatment after the first round. We waited to see what would happen. I was glad for that. At about 7 months the Wegs dog started waking up. We treated a couple months later, when we were certain it was Wegs.

He has always been very conservative about using rtx with me, given that I'm "only" 48. I'm having my 5th round in June. At this point we're trying to use it only annually-- 4 infusions each round.

[me2]

My doctor said they have not seen decrease in effectiveness yet in Rituxan use for WG that they are conservative in use for other reasons. Is he correct I wonder?

[pberggren1]

My doc is conservative about the use of rtx as well. He said he would not want me to have the 4 infusions again unless we knew for almost certainty that I was flaring.

[drz]

Hello,
I was curious what advice you are all receiving regarding retreatment with RTX. My son's doctor is talking about retreating on schedule (I don't know if that means one "booster" dose or the full course of 4 yet, after 6 months), possibly dependent on a rise in ANCA score, but not symptoms. I am very thankful RTX worked for my son, but fear that treating on schedule will eventually make it less effective for him. And who is to say his body can not maintain a drug free remission for a while? (My greatest hope!)
Would love to hear your input!
Thanks,
Karen

"but fear that treating on schedule will eventually make it less effective for him. And who is to say his body can not maintain a drug free remission for a while? (My greatest hope!) "
----that is my doctors thinking too and my current treatment plan. RTX will be saved for a big flare that is life threatening. Till then I am getting by with generic Imuran and 5 mg pred for maintenance drugs. A lot depends upon your symptoms, treatment history, current health and risk from a flare so it is very individual based.

[Al]

The way I understand it, from a few conversations and what I have found on PubMed, there are two concerns. 1) The first is that, given the competition among cell generation, a higher percentage of B cells will develop without the CD20 receptor, which RTX targets. 2) There are potential side effects to RTX, involvind opportunistic infections. Though rare, doctors may be wary of pushing their luck.

Al

[Palmyra]

All of the above.... you have the brightest folks on the forum commenting here. My daughter has been treated possibly the longest time with RTX for refractory Weg, and we have no clue what is in her future. She has been treated since 2006 with MTX alone, and is currently at two infusions/ ~6 months. I worry that this is not a long term option, and she will have to find an alternative therapy within the next 12 months. She does not tolerate imuran or cellcept.

[Sangye]

The other risk is that you can develop an allergy to rtx. This happened to one of Dr Seo's patients. He'd had rtx many times without a problem, then had a major anaphylactic reaction. It was the only drug option for him, so I don't know what happened.

This is why, even though Dr Seo is willing to use 80 mg solumedrol in my rtx infusions, I won't let him drop it below the 100mg we've used all this time. Rtx is my only option as well.

[dutch]

Thank you for all the feedback. I will be going to VF conference this Saturday and will ask the question of some of presenters. I know there is research hoping to find the biomarker that would indicate when treating again is necessary. I am also hoping to hear of some new treatment developments on the horizon so everyone will have many tools in their tool belt!

Karen

[Al]

Thank you for all the feedback. I will be going to VF conference this Saturday and will ask the question of some of presenters. I know there is research hoping to find the biomarker that would indicate when treating again is necessary. I am also hoping to hear of some new treatment developments on the horizon so everyone will have many tools in their tool belt!

Karen

I am somewhat skeptical about finding a universal biomarker. ANCA titers, for instance, can be an telltale marker for some people--but not everyone. In any case, Karen, please let us know what you learn!

Al