I was wondering if anyone else has JC virus and is on Tysabri? I’m not quite sure what to do. I’m thinking of staying on it for a bit but I know it’s risky. My neurologist has put me on an IV every 6 weeks and an MRI every 3 months to lessen the risk. I think there’s risk with everything but curious if anyone else has experienced it?
Thanks 
Hi Browns, I have been on tysabri for 4 years and have been JC positive since the beginning. My neuro had said I would be monitored and I get bloods done regularly. The last one showed my level was 0.6 down from previous which was 0.8.
I had my neurology appointment 6 weeks ago and they did say I was still at risk albeit low risk and I have now been switched from 4 weeks to 6 weeks as the neurologist says tysabri is working well with me.
We can only follow their advice.
Hope all is well with you and everything works out.
Much Love
Maryx
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Thank you. I breathed easier reading you message xx
The Barts risk guide might help to put your mind at rest.
Understand your risk of PML with Natalizumab (clinicspeak.com)
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That is such a simple and clear tool to estimate risk - thank you.
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Hi Browns I have been on tysabri for 13 years and tested jc positive at the start. I have my blood test done twice a year for JC and have three mri scans a year. I am lucky that mt JC test has remained low with my last one coming back at 0.56.My neuro who i saw 3 months ago goes through everything with me and gives me the option of staying with Tysabri or changing and for me the option was easy as Tysabri has been a life changer
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I am glad that Tysabri has been a game-changer for you, too. It’s bought me 16 relapse-free years and that is a gift beyond price to me. Who knows what the future brings, but I’ve had those lovely peaceful years and nothing can take them away.
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I was 3.? when I started Tysabri and jumped to 4.58 by my 8th infusion and stopped. That was my Neurologists decision because he wouldn’t sign off on continuing on Tysabri. This was when Tysabri was by IV every 4 weeks. I’m not sure how the risk factors change when getting it every 6 weeks compared to 4 weeks but I’d be confident your Neurologist is looking at your overall risk. Had I remained at 3.? I’d have been on Tysabri for the first 2 years atleast, maybe longer if I was getting it every 6 weeks.
Morning BrownS,
I had my first 6 weekly infusion of tysabri yesterday as opposed to my normal 4 weekly. I had a MRI 4 weeks ago and as there were no results through as yet and because I am JC positive the team in the ward had to contact radiology to enquire/chase up results which they did and initially they had said there were some changes to the scan and therefore the ward sister contacted my neurologist who then read the scan and gave the all clear to go ahead with the infusion.
The staff on the ward are so very caring and wanted to find out for me which I am thoroughly grateful for as you know had I just gone home it could be another few weeks before I got results leading to a further delay in treatment.
My neurologist will write to explain all and I have a telecall with him in a few weeks.
Just wanted to reassure you that they are very cautious when dealing with Tysabri and being JC positive and wish you the very best for your future treatment.
Much love
Maryx
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Hi, I’ve been on tysabri since 2017/18 - now on sub-cut every 6 weeks + mri + bloods + meetings, etc.
I’ve been asking about alternatives and PML as I’m JCV+ (but low).
Odds are 1 in 1000 - I dont like those odds.
So I have a meeting coming up to discuss alternatives, but PML may also be an issue on other meds. Blood-Brain Barrier letting the baddies in.