Rituximab

[Brooke]

Just wondering if anybody has tried Rituximab first before trying Cyclophosphamide? Any side effects noticed right away?
Also, I know they don't know the long term side effects of Rituximab but they wouldn't be anymore harmful than the Cyclophosphamide right?

[JanW]

Brooke -- the exciting thing about rtx is that its toxicity is much less than ctx. That having been said there have been no long term studies (I believe the study that proved efficacy was only completed in 2009) of it on WG patients, although it has been used in oncology for some time. There is apparently some talk about using it for other rheumatic illnesses less severe than our own, so the docs feel as though it shows a lot of promise. My doc would try rtx before ctx on me for certain.

[Brooke]

Thanks Jan, I am glad there is something that is less toxic to use than the ctx. I hope it works!
How is the methotrexate working for you?

[JanW]

I'm only in week 2 and only at a tolerance dose. Last time we tried my liver enzymes spiked and he took me off of it due to impending SS surgery. This time he has dropped the tolerance dosage and I am scrupulously avoiding alcohol and NSAIDs (both of which i was using, in moderation, during the last trial.

Hopefully it will work, but if not, he said he would probably go to cellcept or imuran before rtx.

[Sangye]

Brooke, ctx and rtx are 2 different classes of drugs. Ctx is chemo, and Rtx is not (it's a genetically-engineered antibody). The risks of ctx are very well-known since it's been in use for so many years-- for both Weggies and other conditions.

Rtx has been used for at least 10 yrs for Non-Hodgkin's Lymphoma (cancer). In the short-term, it's definitely much less toxic or damaging than ctx. What has yet to be learned about rtx are the risks after using it every few months for years or what happens many years after using it at all. Because of this, the Wegs specialists are using it with due caution. They know it's safer than ctx in many ways, but they respect what is unknown about it.

[Brooke]

Good luck Jan with the methotrexate!
Thanks Sangye for the information on rtx and ctx. I hope there isn't anything too worriesome we have to worry about in the future with rtx.

[Sangye]

I hope not, either. There's no use in worrying about it, even if we have to take ctx. These are the only options we have for staying alive. Just trying to deal with what's on my plate in the present is enough.

[pberggren1]

I want to talk to my Rheumy when I see her in June about rtx. I would like to get pre-approved for rtx. I know that she doesn't have any Weggies on it but there is another doc that has one on it I think. I just dread the thought of going on ctx if I flare again. What do you guys think?

[Sangye]

When my Wegs doc put me back on ctx last summer, he started the process to get me pre-approved for rtx. He wanted it in case we needed it. I think it's always good to have ready.

[pberggren1]

Thanks Sangye. That was quick.