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Goodbye, Tysabri. You’ve been awesome.

Posted on Sep 18, 2013 in Medication, Multiple Sclerosis | 0 comments


And so it with great sadness that I must end Tysabri. I’ve been JCV positive from the beginning of my treatment January this year, and my latest bloodwork showed 1.7 (whatever that is) of antibodies. The threshold is 2, I think.

I felt awesome all these 9 months I’ve been on it, the most normal I’ve ever been since I was diagnosed. I even forget I have MS sometimes.

I will have my last infusion this October and after that, a 6-week washout for this new drug I’ll be getting. My neurologist is very confident about it and is actually enthusiastically used here in Sweden and Europe as a third in line treatment after the Betaferons and Tysabri. It’s called Mabthera (Rituximab), and although the drug has been around for a while to treat lymphoma and rheumatoid arthritis, it has not yet been approved officially for Multiple Sclerosis. Phase 2 trials yielded incredible results; the relapse rate is reduced to 50% and lesion apperance are reduced to 90%, just as effective as Tysabri and even better than the much-touted oral pill Tecfidera. But due to commercial and political issues, we might not see a Phase 3. Apparently because it is a cheaper drug, it is not deemed profitable for Biogen/Roche. Read this article here.

I must admit, it is a bit daunting to let go of something that has worked wonderfully for months, but I guess I can’t push it at the risk of having PML.

The good thing about this Mabthera, however, is that it is administered as an infusion drip that lasts 5-6 hours only once every six months for the first year or so, and ONCE a year after that. No more monthly trips to the hospital then. I can actually plan my trips and afford to be spontaneous without having to consider infusion dates.

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