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Rituxan if JC+?

Posted: Mon Jun 09, 2014 12:57 pm
by lampnerjones
I was diagnosed way back in 1991 (22 years ago). I've been incredibly lucky and "passed" up until about 3 years ago. I'm still mobile but have some balance and drop toe issues. I've been on all of the ABC meds, and am currently on Tecfidera and Ampyra. I developed antibodies to Tysabri on the third infusion. I also just tested positive for the JC virus. My neurologist is recommending Rituxan. She's less concerned with my JC + status because evidence shows there's a 1 in 100 risk of PML in Tysabri patients after 2 years and 1 in 25,000 with Rituxan. She has moved her JC virus positive patients who were on Tysabri to Rituxan. They all are doing fine.

So, I'm concerned about infusion reactions. She said they would pre-medicate me with Benadryl. I'm trying to figure out if I'll be able to drive about 30 miles after the infusion or if I should arrange for someone to accompany me.

Thanks for any input. I'm not usually a wimp about this stuff, but Rituxan scares me.

Re: Rituxan if JC+?

Posted: Mon Jun 09, 2014 2:09 pm
by Anonymoose
Hi lampler,

I had someone drive me for first infusion but it was completely unnecessary. For the next three, I did the 15 minute drive (5.7 miles on a major street w/several traffic lights) myself but had someone nearby on call in case I felt I needed a ride. I could definitely sleep after the infusion but wasn't in any danger of spontaneously falling asleep. I had four weekly infusions including iv and intrathecal injections so it was a bit more hard core than the usual.

Hope that helps and good luck!

Re: Rituxan if JC+?

Posted: Wed Nov 18, 2015 11:44 am
by centenarian100
In a case series, there were 4 total cases of PML in rheumatoid arthritis treated with rituxan out of 129,000 exposed, suggesting risk of 1/25,000; 1 case with no biologic and minimal immunosuppressive therapy.

source:

“Rituximab-associated progressive multifocal leukoencephalopathy in rheumatoid arthritis JAMA Neurology, “09/14/2011 Clifford DB et al.

To my knowledge there have been no reported cases of PML in rituxan treated patients with multiple sclerosis; However, there are about 114 total cases in association with rituximab as of 2013

source: “New insights on human polyomavirus JC and pathogenesis of progressive multifocal leukoencephalopathy.”
Clin Dev Immunol. 2013;2013:839719. doi: 10.1155/2013/839719. Epub 2013 Apr 17.; Bellizzi A1, Anzivino E, Rodio DM, Palamara AT, Nencioni L, Pietropaolo V.

However, a lot of these patients received other immunosuppressive drugs as well.