CTX in my future... RTX did not work for me :(

[norcalian]

I'm sorry to hear about needing to switch to CTX. Is there anyone on the forum that can speak to gaining any sort of remission from RTX only? I know it's relatively new...just wondering what people's experiences are with lasting results from RTX.

[Brooke]

I was initially put on Methotrexate in 2009, when that didn't work I did the Rituxan in April 2010. That helped a lot! After my B-Cells came back in March of this year, my doctor wanted me to do another round of Rituxan. So, I did that in April this year. Feeling great, hopefully it works forever!

[norcalian]

I was initially put on Methotrexate in 2009, when that didn't work I did the Rituxan in April 2010. That helped a lot! After my B-Cells came back in March of this year, my doctor wanted me to do another round of Rituxan. So, I did that in April this year. Feeling great, hopefully it works forever!

Did you have to go back on prednisone as well? My Rheumy made it sound like since I did not do CTX that I would probably would not be as likely to get a long term remission and might be doing RTX every couple of years or so to manage flares. RTX is pretty mild, so I wouldn't mind that part...but I don't want to be back on high doses of prednisone every couple of years...it would almost be worth it to do CTX and try to get into a longer term remission. I'm wondering if anyone has been in relative long-term medication free remission (2-5 years...since i believe it's only been in use for about 5 years) with one infusion course of RTX?

[Pmarsh]

Hello. I've been on CTX basically since I was diagnosed in October. For the first few months I didn't notice any side effects - although I was pretty sick from the Wg's for the first few months. The more doses I had the more I noticed some minor nausea on the first couple days after the treatment. Nothing ondansitron (sp?) or some other anti-nausea drug couldn't handle. I've been working while on CTX. I have a job that can be very physical at times, but was accommodated with office work when needed. I was also given leeway to work from home if I felt really lousy. All-in-all I was surprised with how easy CTX was to manage, although I can't wait to be off it (1-2 more doses fingers crossed). All the best.

[Psyborg]

I wonder how much difference there is between injected versus oral CTX. I know they prefer oral due to how it works, but I don't know if the side effects are the same for both. I took the pills, and as I said, I had pronounced exhaustion in the mid day, but was still able to get by after a nap with no problems. I'm not sure if injected CTX has the same affect or not.

[Chris G]

Anna, I'm so sorry the rtx didn't work for you!!

I'm struggling with it now as well. My infusions were 9 weeks ago, and I'm still not able to lower pred below 17.5 without symptoms. My worst fear is that the rtx will fail, and I'll have to take ctx.

[aewaustin]

Thanks everyone for the comments! Glad to hear that folks are no so knocked out with CTX, makes me feel better about starting this.

Chris - I am sorry to hear that you are struggling too... There were a few of us that did it at the same time and know we all had high hopes for the RTX. Bummer that it is not panning out as well as we had hoped.

I am also curious to see what luck folks have had with long term remission with RTX vs. CTX. Will be interesting to follow this as more folks get experience with RTX.

[Brooke]

I was not put back on prednisone. I weaned off in 2010 over the Summer. I was put on the steroids in Nov because I wasn't feeling the best but was on them for a short time, i don't remember them helping very much. I was put on an antibiotic from Dec through Feb 2011 for sinus problems and that helped a lot. Then it was April 2011 that I did the infusions again. Maybe it was a little wegs creeping up on me during that time.... sure hope not.

[ArlaMo]

Oh, I'm so sorry the rtx didn't put you in remission!

I was on ctx for almost 11 months before doing the rtx infusions - the first month, I struggled a bit, but a daily nap was so helpful. I don't work, but I have six children and managed to keep up with almost all their comings and goings throughout the treatment. I did lose most of my hair but it is about three inches long now

[aewaustin]

ArlaMo - Thanks Well if you can keep up with six kids then I should be able to keep up with work. YAY on the three inches of hair! Not looking forward to that but, but right now will do anything to be healthy...