Is any one receiving the new treatment called rituxan,my Dr wants to add this drug along with my ivig treatments but I'm scared of it just because it is a component of chemo.
My comments back on page 8 - August 12.
Hello, I had 2 Rituxan treatments but they were both almost 5 years ago.
I was given the option to try this treatment when I really started having nerve problems following Chemo for Hodgkin's. My Hemo doctor at City of Hope suggested it and I went ahead and tried it. I had two treatments and as I remember it they were about a week or so apart and lasted all day.
I was told at the time that I may or may not get any results and if I did they may only be temporary.
My neuropathy was advancing up to my knees at the time and I had a lot of pain when I walked. The Rituxan DID work and significantly reduced the numbness and pain. It seemed to push it all down to the bottoms of my feet AT THE TIME.
It's now been a little over 4 years and my neuropathy has returned, AMOST as it was at the time of the Rituxan treatment. I guess I'm one of those who received only temporary results. I do not remember anything bad from the treatment. YES I would do it again if it were offered.
I do not remember it being as bad as chemo at all. I am thankful for those comparatively better years.
I have now started IVIg. I hope my story helps. All the best to you and yours.
Thanks so much I'm on ivig and will also have rituxan once a month for 4 months you have been so helpfull!
Thanks for mentioning the Rituxan. Sorry, but I have not heard of that drug. Yesterday, I cut back on my dose of Cellcept, per my Neurologist; and in a month, I'll be off Cellcept. Then, depending on the results of a genetic test result for APBD (i.e., if it's negative or positive), I may start on a chemotherapy pill. I hope, if I go on a chemotherapy drug, the side effects are manageable. Good luck to you!
firecracker said:
Thanks so much I'm on ivig and will also have rituxan once a month for 4 months you have been so helpfull!
I've been on Rituxan. It was prescribed by my Rheumatologist for my Lupus and CIDP, to take along with IVIg.
I ended feeling worse, then got a UTI and a fever of 103.6. After a course of antibiotics, I got a second UTI and a fever of 104. Needless to say I quit and have never had another UTI. Keep in mind that we are all different and that is why we should try, keep good records, and make sure we have a doctor available.
I'm going to my neurologist tomorrow and will ask about Rituxan! I'll pass on what he say's.
I talked with my Neurologist about Rituxan treatments and he said as long I was doing well on my IVIG treatments, he wouldn't recommend it!
Our daughter is 14yo & has cidp for which she was been having ivig treatment for 2 years. Her neuro is in the process of getting approval for Rituxan. He says some patients only need 1 treatment, some once a year and some a bit more frequently but it will definitely be less often than the 5 weekly ivig. She will continue to have the ivig for the first few months then go off the ivig & see how it goes.