After a long fight, the hospital has finally agreed to test and report back on our Titre Levels for those who are on Tysabri and JCV+.
I had mine taken on my last infusion so the results won’t be in yet… however after seeing a recent case of PML crop up near by it has really hammered home that I may have a decision to make. So much for really wanting that information! I feel like I was living in blissful ignorance before lol.
Q: What is a high Titre level? Anyone have any info? I have scoured the internet and so far no clear answers… some say over 1.5, some say over 4… and I am at a loss. There is a big difference between those numbers!
Also, what have you been advised by the powers that be? At the mo, due to heart issues that are yet to be looked into, Fingolimod (Gilenya) has been ruled out as it decreases your heart rate a little. So I am stuck with Tysabri or pushing for a drug trial or something even more expensive. And we all know how much the NHS love spending money (I haven’t a chance!).
Any info, pointing in directions, or general moans will be very much appreciated.
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