Tysabri injections, nice idea

After 10 years, Tysabri is evolving to become simpler to administer. One of the strongest MS drugs, and up until a few years ago, the only ‘highly effective’ treatment available, has involved an afternoon spent in hospital every four weeks. Only dispensed at regional centres, it’s generally not even your local hospital – For me an hour away in North London, with all the congestion charges and parking problems included.

So the announcement that Biogen were making Tysabri available in an injectable format wasn’t unwelcome. Currently an hour-long IV infusion ( with another hour of saline after), this is two subcutaneous injections a few minutes apart, in your stomach, thighs, or arms. One step closer to the idyll of popping to your local GP for 10 minutes. It’s only available if you’ve been on the drug for over 12 months, The logic that by then drug levels will have built up in your body to offset any slower or lower absorption from the drug not being fed directly into your bloodstream.

We were told about the change at the Royal free Hospital for several months before it happened. We knew that our dedicated infusion nurse (funded by Biogen) would be leaving once the change was made – the logic that the injections are quicker and simpler to administer so require less healthcare supervision.

So when the date finally arrived I was ready. I’m not squeamish about needles, anyone receiving the MS therapies 15 years ago would have been used to injecting themselves at least weekly, and an IV canular is hardly pleasant. But this drug BURNS. I mean really stings as it enters your body, the needle is the nice part. At the second injection, my left arm was spasming so violently that the nurse had to keep stopping, prolonging the process. The next day and I was experiencing stinging nerve pain along that same arm, one of my first symptoms pre diagnosis, where you’re rendered incapable of doing anything else. My stomach site formed a bruise the size of a £5 bank note lasting weeks.

I insisted I moved back to the IV infusion. Ultimately, once we’ve travelled an hour and parked the car, an extra hour sat in a hospital chair makes no huge difference, and certainly isn’t worth the adverse effects I had. Additionally, those of us who are JC positive are receiving the drug six weekly, rather than four weekly to lower PML risk, which is already less onerous. Everyone else seems to have transitioned without problem though, my MS nurse guesses it’s because I’m slim with less subcutaneous fat… Which you’d have thought was obvious to them from the outset. I’m resigned that things will rarely go smoothly for me, and know that if my body can react difficultly, it will. But until we get anywhere near Tysabri being administered locally, I’ll give the injections a miss.