Rituximab question ( All in put welcome)

[me2]

Its late for me, long day to the big city to see the big city doc. I will fill in more details later but here is the beggining.

I had Rituxan treatment six months ago. Two infusions (many months ago the protocol was FOUR. Now its two)

My understanding is that since my WG has been several years refractory I am to receive a booster treatment of Rituxan every six months. (Tell me if YOU have done the same , OR something different)

My Rheumy doc says that he knows a doc in England using only ONE infusion at the six month mark and is having good results. I asked if the doc was Dr Jayne since I am familiar with his pioneering work. My doc says "I can't think of the name of the guy" .

Well, this leaves me unable to PERSONALLY evaluate the wisdom of this approach that is new to ME. Since I am the one to make the decisions about my treatment I need more info. This disease has been beating the hell (sorry for expletive) out of me for so long I am reticent to take the safe course of treatment (a single infusion verses two) without knowing its track record.

Does anyone have any information they can share or point me in the direction of someone more knowlegable about this?

Very much appreciated. My primary doc (prominent Internal Medicine guy and researcher) has offered to review any studies or papers I can find on this single dose treatment and help me make a decision. (My Rhuemy hasn't returned my call for a request for more information or reassurance of the effectiveness of a single dose at this point, given my situation.)

If it is any safer and just as effective that would be good. I will share any info I find through this thread. This is my homework.
thanks, Kirk

[Sangye]

Dr Seo has never mentioned a single-dose protocol. I just saw him in July, and I'm pretty sure he would have mentioned it to me, as I also have to have repeated rtx to keep the Wegs dog asleep.

We had been planning to repeat rtx every 6 months but it's now back to the "Let's see if you can make it a year. Holler when you can't take it anymore" plan.

Have you done a search on PubMed?

[Brooke]

I have been getting the 4 infusions. I have had two rounds of the 4 infusions. One in April 2010 and one in April 2011. My doc at Mayo in Rochester said they have been doing the 4 infusion protocol for Wegs patients. She wants me to have another round to keep the Wegs at bay once my b-cells come back again.
Sangye, do your b-cells return quicker each time you have the Rituxan? Mine were gone for about a year the first time, just wondering if they will be returning sooner this time?

[Chris G]

I have had one round of 2 infusion protocol...in may of this year. I will be having another round in November ....6 months after the first. It seems that this 6 month protocol may be becoming a norm. I can't say that I'd simply agree to having rtx every 6 months though. But for me I know wg is still awake & I need a booster.

[Sangye]

Sangye, do your b-cells return quicker each time you have the Rituxan? Mine were gone for about a year the first time, just wondering if they will be returning sooner this time?

I get symptoms of active Wegs requiring re-treatment before they start returning. Sneaky devils.