Questions for Dr Seo

[Brooke]

Just some random thoughts as I read this...
If Rituxan wipes out our b-cells, how come some people are re-treated so soon with Rituxan if their b-cells are still gone?
Sort of a question about my situation, I only had the solumedrol for the first infusion this time. I have been off of pred all year so far. (knock on wood)

[Sangye]

That's actually my case, too Brooke. I get signs/symptoms returning several months before my B cells start returning. The only thing I recall hearing once was that there might be some "hidden" B cells circulating that aren't killed off. But I'll find out for sure.

So my questions along those lines:
1) Why doesn't rtx always work?
2) How can symptoms return before the B cells return?
3) How is it that some people have one round of rtx and go into lasting remission? (ie, Why doesn't Wegs always flare once the B cells return?)

Thanks for jarring my memory about those other 2 questions!

[Sangye]

I'm also going to ask about my hypothesis regarding the 2-infusion vs 4-infusion protocol. The 4-infusion protocol has worked for me, but the 2-infusion protocol didn't. In the 2-dose protocol you get 1,000mg rtx each time, regardless of weight. In the 4-dose protocol you get 375mg/m2 based on weight. So for someone big like me, there's a big difference in total dose (2,000mg vs 3,600mg). My hypothesis is that larger people need the 4 doses.

[norcalian]

I'm really curious about number 3. Thanks for asking these questions.

[ArlaMo]

What are his thoughts on doing subsequent rtx infusions if the patient seems to be going into remission? I've seen some info that another set of infusions at 6 months out seems to be beneficial, but that wasn't in my original plan from Dr. Langford.

[delorisdoe]

I'm really curious about number 3. Thanks for asking these questions.

My answer to number 3 is...because it is wegners and thats how we roll.

[pberggren1]

I will be interested to see what Dr. Seo has to say about those questions.

[drz]

What are his thoughts on doing subsequent rtx infusions if the patient seems to be going into remission? I've seen some info that another set of infusions at 6 months out seems to be beneficial, but that wasn't in my original plan from Dr. Langford.

This is probably one of those mixed bags like the two versus four with no hard evidence on what it is more effective. I know for treating lymphoma with RTX they said they didn't know if there was any benefit in doing preventive treatments every six months or year since there is no research results to prove it either way. Some doctors still do it cause they think it might help and others don't because of risks of the side effects building up.

[Brooke]

I remember my doctor saying that for Wegener's patients they have been doing the 4 infusion. I can ask her why that is as well when I see her in Aug.

[Sangye]

Last time I saw Dr Seo (before I did the 2-infusion protocol) he said some vasculitis centers had started out doing 2 and some doing 4. They each had success so they continued doing what they were used to. He said JHU had been a 4-infusion center, but Wegs docs were finding the results were the same for both so he was using 2 more often.