Last reply 1 week ago
JC virus

I went for my 5 weekly Tysabri infusion in Leeds last week. I am now up to number 26. Sadly, I got the news I was dreading, that I had switched to JC+. Fortunately, my consultant was at the hospital that day, so we were able to have a talk about the future. My titre number was low, fortunately, at 0.29. We talked about the percentage risk of PML. I have gone from 1/10000 as JC-, to 1/5000.

Having been hit by two bad relapses in quick succession in 2017 (which led me to going onto Tysabri in the first place) which massively compromised my mobility, I simply dread another relapse more than I dread PML. Since I will be monitored for PML, and know what to look out for (the slowly appearing symptoms are detailed in the very helpful accompanying literature that each Tysabri patient receives) I have decided to stick with Tysabri. My consultant is firmly of the opinion that it is the best treatment for me.

All I can do is keep thinking positive thoughts, exercise when I’m able and keep up my (hopefully) healthy diet. We’ve got to roll with the punches.

Onwards and upwards, eh?!?

Jon

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stumbler
1 week ago

@wjgregg , You’re quite right to trust in yourself and “your team” to keep an eye on you. If your risk threshold gets “uncomfortable”, then you can look at your alternative options.

And, yes, onwards and upwards. 😉


lori123
1 week ago

@wjgregg,
You are right keep marching on in a positive way.. Listen to yourself and as long as you have a good team behind you it will work.
I hope things get better soon.


zoeb
1 week ago

Hi there!! Sorry to hear you are now JC+ve
Just to reassure you, or offer some empathy, I am in the same boat. I’m JC+ve and also on tysabri. It’s been life changing for me though and because my titre is only 0.57 I am happy to stay on it because the risk is still low. I’ve been at that same titre for the entire time that I have been on the drug (which is more than 5 years!!) I was positive when I went onto it and I had to make a really hard choice in the first instance.

If you feel you’ve made the right choice, then just go with your heart.
If you need anything, then reach out.
Zoe

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