Chiming in - I was just surfing around looking for more information on Rituxan versus Orencia. I am 44 and have had RA for about 3 years. My RD described my disease as unusually rapid and severe. I was diagnosed within 3 months of symptoms and had bone erosions on my hands and feet within 3 months of that. Generally not a good prognosis. Luckily for me, I had one of the best rheumatologists in the country handling my treatment plan, and he moved me quickly through all the TNF drugs. I was able to tolerate them and Enbrel and Humira helped initially, then swiftly failed - Remicade had no effect as I continued to get progressively worse. He switched me to Rituxan as soon as it came out of trials and my life was given back to me. I had no problems with the infusions other than a little itchy rash that cleared up with more benadryl. Doing the benadryl through the IV is MUCH better than taking the pills, for me - I no longer have any reaction at all to the infusion. I have now had three rounds of infusions, roughly 8 months apart (everyone's different on how long each round lasts), and each one I have gotten better and better. On my last xrays, the bone erosions have filled back in (!!) and the radiologist reported surprise and wondered if I had gout instead of RA !! My CRP went from 100 to .2. This is miraculous, as in this short time I have had much permanent damage to two major joints, but I dare hope the damage will stop and I could even go into medical remission. Sadly my wonderful RD passed away and now I had to find a new rheumatologist. I have seen one who believes Rituxan is too dangerous and should only be considered a "rescue med." I got a second opinion from an RD who is not as familiar with Rituxan so he suggested I switch to Orencia. It seems counter-intuitive to switch from a med that is clearly turning this disease around to one I have no idea will work as well or at all and he actually agreed with that. So now I will go for at least one more round - at 9 months out I'm having a return of symptoms. My first RD was simply an amazing doctor, a very respected doctor and professor at a major medical school, head of the Rheumatology Dept at the University Hospital - I refuse to accept that he would choose a course of treatment that wasn't appropriate for me and for others with severe disease that does not respond to the TNF meds. However I'm uncertain if because of the SLE pts who have contracted PML, he would agree with these other doctors that I switch to Orencia. It seems that those pts had severe SLE and long-term immuno-suppression from a variety of meds. I do think it may be valid to be concerned about long-term B cell suppression, but I can't find out much about it, except that there isn't much to know, so they can only speculate. Despite that, I'm still a big believer in Rituxan. I've had no side effects, other than a huge improvement in my very severe RA symptoms and even some healing of bone erosions. I hope I can continue taking it as it has literally given me my life back.

Hi Cindy,

I agree with what Arlene said. Sounds like Rituxan is your best option now. I say keep fighting - don't give up! I was really circling the drain until I got on Rituxan.

 

Shortly after my last post, I did another round of Rituxan and that one worked for a long long time. It's been over a year now and I still feel pretty darn good. One thing that I'm discovering though, is that somehow there is always one joint that gets hammered. Right now it is my feet. They're getting pretty rough, but other than that I feel pretty "normal" - which is remarkable to me this far out from my last infusion.

 

I found a new rheumatologist who I really like, and she's not averse to Rituxan, but there is a new med coming out of trials SOON - it's an IL6 drug called Actemra. It's been in trials for a loooong time because the FDA has really clamped down on drug testing, which has slowed approval. It's already approved in Europe and Japan. She has patients in the trials, and apparently they are doing REALLY REALLY WELL on it.

 

So I think that's my med. Since it's coming out so soon, and because of the damage in my hands & feet (indicating that Rituxan is not working perfectly for me), I think she's going to put me on Orencia until Actemra is approved. Rituxan has such a long long half life - if I did another round of Rituxan, it could be another year now again until I could add another med.

 

I just had a synovectomy on one wrist (synovial cysts were eating away my bones & tendons!). So in one more week I'll be clear to start something, and I think it'll be Orencia. I'm actually not feeling too bad, but I just have to bide my time I guess for Actemra.

 

Anyway - good luck Cindy - I hope Rituxan is at least as much of a miracle med for you as it was for me. Despite the joint problems I've had while on it, I've felt so much more "normal" than I almost could have hoped for.