Hi all, been on Tysabri for about 3 years after a pretty bad relapse during Covid. Since then, the drug has worked pretty well with no sign of disease activity or new lesions in my latest scans.
However, my consultant thinks maybe it would be good time soon to consider switching to Ocrevus or Kesimpta. My JCV is negative but he thinks it’s an unnecessary risk staying on Tysabri for too long at 23 year old. Just looking for some opinions on if the switch would be a good idea or ‘rocking the boat’ so to speak.
Ive been on Ocrevus since last year and had a pretty ok time so far. Its a long day when its done but every 6 months makes it not too bad. I normally feel a little wiped for a few days after but after that im ok.
From a purely personal perspective. I’m of the ‘if it ain’t broke, don’t fix it’ persuasion and would be very hard to coax off Tysabri. Rocking the boat, as you put, it is something I prefer not to do if I can help it!
I am sorry that you’re faced with this rather unwelcome dilemma. Good luck with whatever you decide.
I was high on JCV, 3.32 when I went on Ty and only did it for 8 infusion as my JCV rocketted to the highest seen at the hospital, 4.58 so Neurologist took me off it. Didn’t go on what you’ve been suggested so can’t comment on those specifically. I doubt you can convince your Neurologist to keep you on it if they feel the risk is too great. I would have stayed on it for longer had he let me.