new FDA warning on rituxan ??
AnonymousJanuary 30, 2007 at 12:36 pm
Rituximab is still pretty experimental in CIDP, and considered a last line of defense (after prednisone, IVIG, plasma exchange, cyclosporin) because of its profile of extreme side effects…. but remissions with Rituximab have been seen in CIDP patients. Like all treatments its a mixed bag, works for some, not for others.
The FDA warning was for Rituximab and SLE, but was broad enough of a warning to address all off-label uses involving autoimmune nature.
AnonymousJanuary 30, 2007 at 11:47 pm
I didn’t have rituxan, instead my neuro chose to use massive doses of chemotherapy (cytoxan) to wipe out my immune system & arrest my CIDP. But, as stated above, these types of protocols are only used for the most severe & progressive forms of CIDP. I was warned that I would have a higher risk of getting leukemia 20 years down the road, that I was lose my hair, & might feel sick. But when one has been unable to walk, raise my arms, & use my hands hardly at all for 2 1/2 years, I went for quality of life. That was 3 years ago & I feel like I made the right decision. I now can walk, drive, cook, gocery shop, basically enjoy life. If there was only a treatment to end this fatigue, as that remains my biggest complaint.
AnonymousJanuary 31, 2007 at 7:26 pm
I just wanted to thank you both for your responses. In corresponding with people like you on this site I feel I can help my husband make an educated decision..one that is best for him. I will keep you posted. May God bless anyone that has been affected by CIDP. It’s cruel and so unpredictable.
AnonymousFebruary 3, 2007 at 6:43 am
Here are some past threads about Rituxan, including from some who have been treated with it.
Amongst that is the reference to an article written by the amazing DocDavid. Norb wrote that he has a PDF file of the article. Check with Norb.
also Eric started a thread ‘Rituxanisms’. [url]http://www.gbs-cidp.org/forums/showthread.php?t=675&highlight=rituxan[/url]
AnonymousFebruary 11, 2007 at 1:40 pm
I’ve been treated with rituxan twice and 1 round of cytoxan also along with the ivig treatment every two weeks i have now gone 4 weeks without ivig but I am getting weak this week. my condition only improved as far as length between rounds of ivig . I have also taken cellcept, taboxen and my last oral try methotrexate. I’m feeling sorry for myself today, sorry. I always have hope that right around the corner…..
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