Just got 2nd rituxan infusion today

[HazelEyed]

I just got my second rituxan infusion today. My first one was two weeks ago. I go back in six months. I'm feeling exhausted and a bit out of it but that happened the first time too and I felt pretty much back to normal within a few days. Thankfully, I saw no major side effects. For those who have received rituxan infusions what was it like Between infusions? How quickly did you see results? I'm still on 10 mg prednisone which my doctor wants to taper me off of. It would be wonderful to be steroid free between infusions but I'm also realistic about this ugly disease and its unpredictability. It was a big decision for me to go on rituxan but the constant crippling joint pain , hives and skin inflammation, nasal pain and crusting and increasing amounts of blood in my urine led me to it. I am hopeful and positive that this treatment will work for me and all of you who are on it. Any thoughts on efficacy and time it took to see results would be greatly appreciated.


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[drz]

Are you getting enough pred or other steroid to help with these symptoms till RTX takes effect.

[Pete]

Hi Hazel,

Rtx usually takes several weeks until the full main effect kicks in. My labs showed improvement about six weeks after treatment. Your side effects are similar to mine, and the slight fatigue hasn't kept me from doing anything I really needed to do.

I have not been able to get off pred. I was off it for about four months, and then symptoms would reappear. The last time I tried to taper, I was at 3 mg/day and started having symptoms again. I went back up to 5 mg/day and have stayed there for the past 2+ years.

For the next couple of months, you should really try to avoid sick people. Also, practice good hand hygiene. This is your time of maximum immunosupression.

[HazelEyed]

Are you getting enough pred or other steroid to help with these symptoms till RTX takes effect.

Yes. I'm currently on 10 mg of prednisone. I was previously on Cellcept and prednisone but my rheumy and I disagree about using Cellcept and I've since stopped it. I'm hoping rituxan will kick my disease into remission . I landed in the hospital over Christmas 2013 with pneumonia and earlier this year with neutropenia. I'm convinced Cellcept led to both hospitalizations. The drug was immediately stopped after each hospitalization. It certainly helped me with my illness but never put me into remission. It's unfortunate that this disease forces us to take such toxic drugs which often do as much if not more damage than the disease itself.


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[HazelEyed]

Hi Hazel,

Rtx usually takes several weeks until the full main effect kicks in. My labs showed improvement about six weeks after treatment. Your side effects are similar to mine, and the slight fatigue hasn't kept me from doing anything I really needed to do.

I have not been able to get off pred. I was off it for about four months, and then symptoms would reappear. The last time I tried to taper, I was at 3 mg/day and started having symptoms again. I went back up to 5 mg/day and have stayed there for the past 2+ years.

For the next couple of months, you should really try to avoid sick people. Also, practice good hand hygiene. This is your time of maximum immunosupression.




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[HazelEyed]

Hi Pete thanks for the advice and feedback. I agree about avoiding Sick people although it is easier said than done for me with a 3 and 8 year old at home. Although thankfully both kids are healthy at the moment, often it is hard to keep away the germs.
Other than prednisone were you ever on any other drugs while on rituxan?


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[Pete]

Hi Hazel,

I was on methotrexate (15-25 mg/wk) from July 2012 - August 2015. I had my first rtx in October 2013.

I've also been taking bactrim DS 3x/wk as prophylaxis for the type of pneumonia that affects people who are immunosuppressed.