Okay, so this is a game of russian roulette only MSer’s can play. Here’s the history…
I’m on Tysabri. And it’s been great. The first year with MS was horrific - at least 4 disabling relapses, I was running out of symptoms I could have and life was just day after day in bed. Since Tysabri, I’ve had some flare ups and a couple of very small relapses, but nothing on the scale of that first year. So all in all, it’s kept the MS at bay for over 7 years. I have no doubt that without it, I would be quite severely disabled by now.
The other day, I was given a continuation form to sign when I went in for my infusion. Now, not knowing how much you know about Tysabri please don’t be insulted if you already know this - just skip on down. But it is associated with a risk of getting a rapidly progressing lethal brain swelling condition called PML. To get this, you must first have a particular virus - the JC virus. Most of the time, the JC virus is totally harmless to people. Approx. 50% of the UK live quite happily side by side with it in their systems. But sometimes, if you’re on Tysabri, it allows the virus to be a little more opportunistic and cause PML. If you’re -ve for JC or even if you have a very low titre (antibody load, say <0.1) and on Tys your risk of PML is very low - like 1/10000 or something, but it goes up with time (anything over 2 years, then increases year on year with data stopping at 6 years) and the higher your titre level is (anything > 0.9 I think).
So I was looking at this form, and I knew that when I moved from down south over 2 years ago I was JC +ve, but only just (like 0.01 or something ridiculous), but I hadn’t been told since. So I thought I should just double check before signing. I’m going to skip the part where it totally seems like they hadn’t even looked and go straight to the part where it’s now 4. Now skipping the part where they didn’t seem to realise the significancy of how long I’d been on Tys (over 7 years - data stops at 6), let’s go straight to where I’d fall on the chart of ‘risk of PML’, for the max. no. of years shown with a titre of ‘anything over 0.9’ which gives me a PML risk of 1 in 100.
Risk of dying from the condition - 1 in 30 if caught early (so by MRI, pre-symptom stage. Let’s not ask what happened with my last couple of MRI’s) and 1 in 3 if caught late (so post-symptomatic stage). And in either case, if you do live, you’ll be badly brain damaged. But I was unequivocally told in that first year that Tys was my only hope. So my question to you is - do you continue to take the medication?
N.B. I didn’t sign - said I needed to discuss with the Neuro first. We’ll see if they manage to pass that message on…