Editorial response to Rituxin in journal...

[Palmyra]

Hey Crew,

I haven't been around much lately, but I am back! Happy New Year to all, and I wish everyone the gift of tranquility.

I suscribe to a google notification that alerts me any time a word/phrase comes up on the web. This morning's gift came in the form of a discussion in the editorial section of a scholarly journal that our Weg experts present, discuss and debate all things autoimmune.

I thought the discussion of interest, as it might explain why some continue to have symptoms in certain locations/organ systems despite having had Rituxan on board to calm most of the Weg beast. It appears B-cell depletion is more difficult in certain lymphatic areas or areas of reduced circulation. Makes sense!

http://ajrccm.atsjournals.org/conten.../815a.full.pdf


By the by, my daughter is currently fighting a highly unusual bacterial microbe that has invaded her sinuses, post Rituximab. She appears to be responding to round two of antibiotics after a culture and sensitivity test. Her next move is to find an infectious disease specialist to help avoid damaging infections while immunosuppressed. I will keep the group posted!

Again, best wishes to all!

~Knowledge is power. The lack of fear is peace.

[Al]

I read this report, Palmyra--thanks for sharing the link.

The upshot is that RTX may not be as effective for some types of WG as for others. Further, the current protocols may need some tweaking. Finally, the contributors suggest that, in some cases, a combination approach with an unspecified chemo drug (presumably CTX) might be the most efficacious. We'll see, I guess, how all this works out in the wash.

Al

[Sangye]

At my appt last July Dr Seo had mentioned the fact that rtx only affects the B cells which are in circulation-- a mere 10% of the B cells in the body. When I saw him a few weeks ago I asked if I could be having smoldering Wegs even with rtx, because I still have a lot of inflammatory pain and other symptoms. He didn't think so. In fact he was sure that wasn't the case. But I think I do. I think the rest of my B cells are still having quite the party and are staying up late with the Wegs dog.

But even if I'm right there's nothing we can do about it. I can't take ctx again, allergic to mtx, no cellcept with rtx. It would just be nice to have an explanation.

[me2]

Wow. Very interesting. Thanks to all for their input here. I have been dissapointed with my Rituxan results. My doctor acts like Rituxan takes care of everything but my experience is that I have smoldering WGs in the places where I have had the most activity and damage in the past. This all makes more sense to me now. Now if I could talk some sense into my doctor... ha.
So MY guess here would be that part of the picture might be that Rituxan would be most effective for people who have used it early on in their disease. They would not have so much damage, hiding places for the whacky B cells

Thank you also for sharing the Google tool. I have signed up and already gotten some interesting emails. It seems to work really well.

[drz]

At my appt last July Dr Seo had mentioned the fact that rtx only affects the B cells which are in circulation-- a mere 10% of the B cells in the body. When I saw him a few weeks ago I asked if I could be having smoldering Wegs even with rtx, because I still have a lot of inflammatory pain and other symptoms. He didn't think so. In fact he was sure that wasn't the case. But I think I do. I think the rest of my B cells are still having quite the party and are staying up late with the Wegs dog.

But even if I'm right there's nothing we can do about it. I can't take ctx again, allergic to mtx, no cellcept with rtx. It would just be nice to have an explanation.

You didn't mention azathioprine (Imuran) as an option. Has that been tried too or ruled out for other reasons?

[Al]

Wow. Very interesting. Thanks to all for their input here. I have been dissapointed with my Rituxan results. My doctor acts like Rituxan takes care of everything but my experience is that I have smoldering WGs in the places where I have had the most activity and damage in the past. This all makes more sense to me now. Now if I could talk some sense into my doctor... ha.
So MY guess here would be that part of the picture might be that Rituxan would be most effective for people who have used it early on in their disease. They would not have so much damage, hiding places for the whacky B cells....

Turns out, Kirk, that some forms of WG are apparently more amenable to RTX therapy than others. I am personally interested, as I have used up my lifetime quota of CTX, so the next step (if, knock on something arboreal) is likely RTX. Certain kinds of granulomas, for example, seem have somewhat less favorable outcomes than those, like me, whose disease is characterized more by the vasculitis than than by granulomatous lesions. But the research is really in the early stages; no one really knows the optimal RTX protocol for specific contexts.

Al

[Al]

At my appt last July Dr Seo had mentioned the fact that rtx only affects the B cells which are in circulation-- a mere 10% of the B cells in the body. When I saw him a few weeks ago I asked if I could be having smoldering Wegs even with rtx, because I still have a lot of inflammatory pain and other symptoms. He didn't think so. In fact he was sure that wasn't the case. But I think I do. I think the rest of my B cells are still having quite the party and are staying up late with the Wegs dog....

How much "partying" your B cells are up to, Sangye, can partially be measured by the ANCA test. How has that dog been behaving for you? Trouble is (or one trouble, anyway), is that there are other autoantibodies produced by certain B cells. The ANCA test doesn't look at them, but they can also cause grief. B cells are a pretty complicated bunch, and RTX, as you note, target only a small subset of them. Then again, with zero antibody production, we would be sitting ducks for a variety of infections.

Al

[Chris G]

At my appt last July Dr Seo had mentioned the fact that rtx only affects the B cells which are in circulation-- a mere 10% of the B cells in the body. When I saw him a few weeks ago I asked if I could be having smoldering Wegs even with rtx, because I still have a lot of inflammatory pain and other symptoms. He didn't think so. In fact he was sure that wasn't the case. But I think I do. I think the rest of my B cells are still having quite the party and are staying up late with the Wegs dog.

But even if I'm right there's nothing we can do about it. I can't take ctx again, allergic to mtx, no cellcept with rtx. It would just be nice to have an explanation.

Sangye - You say "no cellcelt with rtx" - what do you mean by this? They can't be taken together? I've had 2 rounds of rtx (on in May, and one in December), and I feel that I might still need another maintenance drug as a backup or support character, to the rtx. I can't take mtx or aza, and I guess that leaves me with only cellcept as an option. Would this be ruled out too for some reason?

My doc's ordered the 2nd round of rtx 6 months after the first - which seems to be standard protocol. But, the first round very obviously "wore off" a couple of weeks prior to my second round. Symptoms started returning slowly ie, night sweats, daily sinus headaches, sinus stuffiness, slight SOB, increased fatgue, etc. Now that I'm about a month post infusions, I'm feeling better, except for the ever present fatigue, nasal crusting, and occasional headache. I see my docs again in March, an I plan to tell them about the temporary setback which occurred in late November. I don' want it to happen again in the next 5 months, so I was going to ask them about cellcept.

[Sangye]

Sangye - You say "no cellcelt with rtx" - what do you mean by this? They can't be taken together?

Cellcept targets B cells just like rtx. I think it only kills the ones in circulation, like rtx.

[Sangye]

Wow. Very interesting. Thanks to all for their input here. I have been dissapointed with my Rituxan results. My doctor acts like Rituxan takes care of everything but my experience is that I have smoldering WGs in the places where I have had the most activity and damage in the past. This all makes more sense to me now. Now if I could talk some sense into my doctor... ha.
So MY guess here would be that part of the picture might be that Rituxan would be most effective for people who have used it early on in their disease. They would not have so much damage, hiding places for the whacky B cells

.

Rtx does a great job at stopping lung hemorrhage for me. It seemed to do a better job at controlling joint pain the first couple times I did it. But I am just like you, Kirk-- way too many symptoms even when the rtx is at its peak and the symptoms hit worst in its familiar partying places. Even though my B cells are still gone I'm having tons of active Wegs symptoms these days.