Long term Rituximab

[gunnyl]

Curious how many of my fellow Weggies have been on Rituximab long term.
I've been getting RTX infusions for 9 years now.
I recently experienced some neurological issues and was tested for PML which is a risk of long term Rituximab infusions; although very rare it is a possibility and one I was never warned about. Not going to lie, scared the crap out of me.
If you're in a similar situation with regard to long term RTX, research PML and make an informed decision as to staying on it or talking to your Rheumatologist about options.
I'm currently working with my Rheumy to switch to another treatment plan and get off of the RTX. I have a couple months before the RTX is out of my system.


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[John S]

Thanks for the update

[dmd8765]

Ugh PML is horrifying. I was under the impression that it was more likely to happen early in treatment but I guess I need to do more research. I’ve been on RTX for 10+ years.

[gunnyl]

All of my tests came back negative for PML but I am still changing my regimen to something less immunosuppressive after the scare. Just not worth the risk to stay on RTX. I've gotten sick often and fought so many infections since I've been on it as well!


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[John S]

Do you take Bactrim?