Rituximab Question

[feliciamings]

Hey everyone!

I was diagnosed in Nov of 2012. We started Rituximab infusions 3 weeks later and I was on 60 mg of prednisone a day. That was the first round. When it was clear in April that it had not worked we re-treated in May I was down to 30 mg of prednisone at this time. Again, it didn't work and I ended up being so sick I was back to coughing up blood. We tried for a 3rd time December of 2013 and I was at 20 mg of prednisone. In March of 2014 it was not working yet again we switched to Imuran. 100mg a day for a month and now nearly 3 months of 150 mg a day. I have also been down to 15 mg of prednisone since April of 2014. I have been feeling extremaly poorly for the past 10 days so we are going to run my C-Reactive and Sedimentation rate again tomorrow. If my numbers have continued to increase we will be trying Rituximab again.

What I am wondering is if anyone has experience with trying Rituximab again after it has not worked. I have heard that it can put the disease into remission or help after a while but would love any first hand accounts. We are trying to avoid Cytoxan... We still have Methotrexate and Cellcept to try first...

Thank you all!

[annekat]

My 2 cents worth is that Cytoxan really works, and fast, in my experience. For others it may not have been tolerable,or may not have worked, for one reason or another. I was on it for longer than I may have needed to be, probably due to an inexperienced doc. I always drank lots of water every day to minimize the risks of bladder cancer. I don't remember hearing of anyone on here getting bladder cancer after using CTX. I think all the meds we take carry their own particular risks. I am now on MTX as a maintenance med and I think some will use RTX that way after being on CTX previously. I have no experience with Imuran. All that being said, I have heard that RTX doesn't always work right away, and may eventually kick in, which I hope will happen for you. It would just concern me that a lot of damage could take place while waiting for it to start working. Good luck!

[Pete]

I tolerated cytoxan pretty well, and I was on it for about 16 months. Current protocols call for using it for up to six months to bring the disease under control, then transition to immuran, methotrexate, or cellcept. You need to keep well hydrated and urinate whenever you have the urge. This is to prevent the ctx metabolates from spending too much time in the bladder. Your doc should monitor for blood in the urine as this is could be a symptom of cystitis.

[feliciamings]

Thanks guys!

My doctor has cytoxan as a last resort. We're hoping to preserve my fertility. I'm lucky enough that all major/life threatening stuff is suppressed by the prednisone currently. So we're playing the waiting game... hoping we can get something else to work before I absolutely have to get off these doses of prednisone. My guess is another year before we reach that point. I very much hope something works before that though because the lovely prednisone side effects are starting to increase and get worse.

[annekat]

I could be wrong, but I think I've heard of people having babies after having been on CTX. However, your doc knows best, and if there's any chance of it being a problem, I can certainly understand why you would avoid it.

[feliciamings]

Cytoxan is very likely to cause infertility after the very first dose. If we have to go that way we're thinking of harvesting my eggs and going the invetro route. In which case cytoxan may actually be the best chance I have to safely get pregnant and carry a child. It has the best chance of putting me into remission for long enough for that to happen... it's not totally off the list, it's just really far down.