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View Full Version : Rituxin: retreat on schedule or with symptoms?



dutch
04-18-2012, 12:20 PM
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
04-19-2012, 12:18 AM
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
04-19-2012, 12:43 AM
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
04-19-2012, 02:09 AM
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
04-19-2012, 10:41 AM
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
04-19-2012, 11:42 AM
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
04-19-2012, 11:54 AM
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
04-20-2012, 01:25 AM
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
04-20-2012, 03:08 AM
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
04-20-2012, 11:46 AM
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!

KarenI 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

me2
04-20-2012, 12:15 PM
Docs like numbers , quantification, (so do I) but in my case I can tell you from years of experience I am one of the unfortunates whose only reliable marker is my complaints. Doesn't make doc happy or me either. It puts both of us in a difficult position.
I will be very interested to see what you learn Karen. I wish I could go too. I have gone to two in the past (Kansas City, and Cleveland) and wow, was it worth the trip. I remember one doc commenting on various organizations for rare diseases and he said we weggies were the 900 lb gorilla. He meant that as a complement to the hard work, organization and dedication of people involved. Well, much like the people here on this web site.

Sangye
04-20-2012, 12:46 PM
I would love to have a biomarker. Like Kirk, my labs are unreliable. Everything looks fine until I'm in the ICU with hemorrhaging lungs.

Dryhill
04-22-2012, 11:38 AM
I would love to have a biomarker. Like Kirk, my labs are unreliable. Everything looks fine until I'm in the ICU with hemorrhaging lungs.

That really sucks and I feel for you, I am lucky in that my ANCA count is a very good guide to my status with the old dog.

Jim

Sangye
04-22-2012, 12:41 PM
That really sucks and I feel for you, I am lucky in that my ANCA count is a very good guide to my status with the old dog.

Jim

Good doggie. Much better behaved than mine. LOL

Dryhill
04-24-2012, 11:54 AM
Good doggie. Much better behaved than mine. LOL


Yes at the moment it is behaing well, quite house trained. It is more like a cute Labrador puppy that wants to lick me all the time with just a little nibble here and there to remind me it is still there. It is when it grows into a dirty great big Rottweiller that worries me :love:

Jim

Sangye
04-24-2012, 12:46 PM
LOL It might turn into a Rottweiler like the one a friend of mind adopted. A big sweet girl. Wouldn't hurt a fly. Most Rotties I've known are like that.

Al
04-24-2012, 02:28 PM
Yes at the moment it is behaing well, quite house trained. It is more like a cute Labrador puppy that wants to lick me all the time with just a little nibble here and there to remind me it is still there. It is when it grows into a dirty great big Rottweiller that worries me :love:

Jim
This made me laugh. Actually, I've know some canine Rottweilers that were true pussycats. But I get your metaphor, Jim. My own dog tracks well, too. I think I have my doc trained to let the pooch announce her presence honestly.

Al

Dryhill
04-25-2012, 09:56 AM
This made me laugh. Actually, I've know some canine Rottweilers that were true pussycats. But I get your metaphor, Jim. My own dog tracks well, too. I think I have my doc trained to let the pooch announce her presence honestly.

Al

Oh yes there used to be one at the local green grocers who was a real softy. He was also a Crystal Palace (that is a south London football - soccer - team) supporter, you could tell because on match days he wore the team shirt and on cold days the team scarf as well.

Jim

Meredith
04-26-2012, 05:20 AM
I had my first treatment with Rituxan last April (4 treatments). I had a blood test done approx. 4 weeks ago and it showed some slight inflation. Instead of going back within 3 months he is having me come within a month. I go next week. Guess he is watching me closely. My question is has anyone had a 2nd round of the rituxan? Though I had no problems with the 1st round I wondered if anything was different with the 2nd. On a good note I just wanted to let everyone know that though I have struggled with this for approx. 7-8 years I am still working, in fact just got back from a 2 week business trip to India. It has not stopped me from doing anything except going under water swimming (he did not want water in my ears because that is where I was originally diagnosed). I am hoping China is my next business trip. I am 56.

Sangye
04-26-2012, 05:56 AM
I'll be having my 5th round of rtx in June. There isn't anything different to be expected, though an allergic reaction is always possible. They should always give benedryl and solumedrol during the infusions to prevent this.

It's great that you've been able to keep working and live a normal life. Not everyone has such a good outcome, but I'm happy for those who do.

aewaustin
04-28-2012, 08:03 AM
I am another that does not have any of the normal Weg's markers, but have been positively diagnosed with the disease via kidney biopsy.

I just had my second round of RTX, 1st was April 2011 and the last was this past February. I did CTX from July 2011 to January 2012 and then stopped because of a low WBC, and by doing RTX on the heels of that my WBC became really low. So that would be my caution to just doing RTX, be wary of your WBC. I know that seems obvious, but in the middle of it I just did not put 2 + 2 together. I won't make that mistake again.

Al
04-28-2012, 02:35 PM
I am another that does not have any of the normal Weg's markers, but have been positively diagnosed with the disease via kidney biopsy.

I just had my second round of RTX, 1st was April 2011 and the last was this past February. I did CTX from July 2011 to January 2012 and then stopped because of a low WBC, and by doing RTX on the heels of that my WBC became really low. So that would be my caution to just doing RTX, be wary of your WBC. I know that seems obvious, but in the middle of it I just did not put 2 + 2 together. I won't make that mistake again.Of course, Anna, RTX is designed to deplete while blood cells--at least the B cells. But you are correct: Too much is too much. I hope you are doing well now...!