2 vs. 4 RTX Infusions - Thoughts?

[pberggren1]

Just wondering why you are on Nexium and Bactrim Meredith.

[Palmyra]

Good Morning and best wishes to all....

This is a relatively old topic, but one that is of current interest to me. My daughter is currently experiencing a moderate flair after only 5 months post a 2 treatment infusion of RTX. She's been popped back on some solumedrol, and is awaiting scheduling for another infusion. This has not happened in the previous 6 years of treatment with rituxan. My observation is that she had a more sustained, longer lasting remission with 4 infusions.

I also worry a bit about developing autoantibody resistance to the drug...which would be very bad if there is no new drug coming down the pharma pipeline.

Any collective thoughts? The more the better!

[me2]

Good morning also. I feel pretty good this morning for some reason - been a looooong time. Don't ask me why I feel good this morning, I just had a week of having to boost my pred. I seem stable back on 15mg where I have been for a few months now. I am three weeks from my 6 month Rituxan 'booster' shot.
I think about this question a lot Palmyra. I have flared at 5 months twice now and I have wondered if the 6 month standard might get adjusted - at least for me.
I don't know the experience of others in this regard so it is very interesting to me to hear your daughters experience is simular to mine. I know this is only a study of two but still, it is interesting - plus it now doubles my study sample. ha I'm sorry your daughter is slipping up right now.
I have only had Rituxan treatment three times. First time 4 infusions - and I seemingly had no benifit. I did not get better and went on to Cytoxan treatment.
My next experience was with the 2 infusion protocol and I then seemed to realize some benifit.
And NOW my last treatment was a 1 infusion 'booster' shot. I was skeptical it would work but trusted my doc on this one. He seems to have been right, I got 5 good months same as the two infusions.

I read up a little the idea of resistance and can't say I really understand it. Perhaps it is one reason my doc is trying to limit my exposure by giving me only one infusion at 6 months.
I wish there were a book on this topic I am having trouble trying to piece together a clear picture.

I did read that in using Rituxan for lymphoma and dealing with resistance they were able to increase the effectiveness of the Rituxan by combining it with other treatments, one of which was prednisone. I don't know how this applies to us but prednisone always seems to come up when we start to run into problems doesn't it? ha
I have not heard of combining Riuxan with other treatments to increase its effectiveness for WG. I wonder what one of the
'big giant head' doctors would say. As time goes on, presumably they will have to deal with resistance more and more.
I couldn't find anything relating frequency of use to resistance. It seems obvious they would be related by I didn't actually see that. I need to look into this some more. I hope your daughter bounces back quickly like I have.

[Palmyra]

Thanks me2,
We know from previous experience with other biologics (remicade, humira) that resistance can and does occur. I actually related humira use to her development of Weg and have found evidence of that in published studies/analysis.

Go Marta! We need a cure to all AI diseases!

[Sangye]

The first 2 times I had rtx I did 4 infusions. The 3rd time I did only 2 infusions because we were gonna do them every six months. Unfortunately the 2 infusions didn't work and I had to do a set of 4 within a couple months. It seems if you're more overweight, the difference in rtx received in the two protocols is large. That's what I think happened to me.

Though Dr Seo and I disagree (he's only going by labs), I feel like the rtx is not doing as good a job at controlling the Wegs as time goes by. I feel like I have smoldering Wegs but he says that's not possible. Makes no sense to me. Rtx only destroys the B cells in circulation (10% of the total), so who's to say the other 90% aren't causing problems?

[pberggren1]

Strange that Dr. Seo thinks that way Sangye. My doc says he has had many cases of Wegs that have smouldered over the years.

[drz]

Though Dr Seo and I disagree (he's only going by labs), I feel like the rtx is not doing as good a job at controlling the Wegs as time goes by.

My doctors would agree with you as do my wife's oncologists. They tell me they do not want to use RTX for me unless it is life threatening flare because they think it becomes less effective each time you use it. I guess it is like antibiotics that your body or bugs build up a tolerance to it when it gets used a lot. But sometimes it seems there is no choice but to try use it as a maintenance drug since you don't seem able to get by without it. Another reason doctors like to avoid heavy drug treatment when possible is to reduce and avoid side effects since we often don't know what the ramifications of long term use of some of these drugs either.

Sorry to hear it feels like the Wegs is smoldering again. Generally our feelings tend to be more reliable indicators unfortunately and sometimes the labs lag behind.

[me2]

My experience is a lot like yours Sangye, both with the disease and the response of my doctors. I know we have talked about this before. I haven't had a direct conversation about smoldering disease with my doc but he treats me like I'm doing fine as long as I'm not physically sitting in his room.
I have had smoldering , and more than smoldering, disease for over 12 years now.
I will say that I am doing better than five years ago, or two years ago, but I'm a fair piece from healthy. I'm encouraged and for the length of time that I have been sick and the many serious events and hospitalizations I have had it is surprising that today my message is hope.
If I can go through all that, for that long, and be feeling like I'm gaining ground... well, its amazing. And I hope my good friends here can find recovery faster and more robustly- I've had that happen too.
Your Dr Seo sounds like a wonderful Dr and a good person. I have a favorite Dr who treated me initially over thirty years ago, but he is not perfect and has made mistakes and has his blind spots too. He might say the same about me.
I am optimistic that treatment and treatment options will continue to evolve for us especially as we stay involved and help the good Drs to ask good questions.
I get Rituxan a week from tomorrow and tracheal dilation shortly after that. For me class is still in session.
Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.

[Al]

....Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.

I'd bed interested in what you find, Kirk. There is a genetic component to WG--meaning that certain gene regulation is involved. though how the genes get involved may be complicated (there is the possibility of a retrovirus, for instance; also, many bacteria and viruses mess around with the DNA structure). Keep us informed, please!

Al

[drz]

Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.

I think this is the one where they just take a blood sample and send it to the place analyzing the data. Sort of like the longitudinal one on treatment too but they are being done at different places. I have had blood samples sent to both places and will be in the longitudinal study on treatment for a while as long as I can tolerate the drive to Mayo where they collect the samples.