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?!?
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