Drugs, Drugs, Glorious Drugs

Holding a metaphorical gun to my head, my neurologist was keen to impress on me the importance of starting a disease modifying drug in the early days of my MS.  The drug in question, Tysabri, was fairly new and patients had been known to die, but the chances of that happening to me were, I was assured, very minimal.  He likened the drug and its associated risks to a game of Russian Roulette, hence the gun.  But that was a game that I wasn’t terribly keen to play, this was, after all, my life we were talking about.  The simple fact remained, however, that I had a very acute form of Relapsing Remitting MS and were it to be left to its own devices, the outcome would be catastrophic.

And so it was that I embarked on, what turned out to be, 10 years of monthly trips to the hospital to have this hardcore drug dripped into my veins.  The results were incredible, and the side effects were non-existent – never once did I regret the decision to pull the trigger.

Wheel forward in time to 2020 and, after a frightening and paralysing relapse, it was decided that Tysabri was no longer doing its job on my mischievous MS.  An MRI scan of my spinal cord confirmed the damage in stark grey and white.  My MS had once again become ‘very active’, and the decision was made to look at other drug options.

In the ‘Highly Effective’ category of MS drugs there are currently 3 options:  Tysabri, Lemtrada and Ocrevus (may I just say here how incredibly grateful I am to have these options available to me, as not all MS patients have this luxury).  I had already done Tysabri and Lemtrada sounded terrifying, which just left Ocrevus.

Ocrevus is an immuno-suppressing drug that targets and destroys certain B cells, which are thought to be culprits in attacking the myelin around nerve cells.  It is administered via infusion every 6 months and is given alongside IV steroids and antihistamine to minimise the side effects. 

I reluctantly made the switch from a drug that I had come to love and trust to one that was new and unknown to me.  Last summer, after a ‘flush out’ period to rid me of Tysabri, I was given my first dose of Ocrevus, split across 2 infusions a fortnight apart.  The infusions went well and, apart from extreme fatigue and a lasting headache, I was soon back to ‘normal’.

Yesterday I had my first full dose of Ocrevus, and I can’t say that I particularly enjoyed the experience.  After a mis-fired cannula attempt in my left arm (standard) a vein was found in my right, and I was ready to start the drawn-out process of alternating infusions and saline flushes.  The antihistamine left me drowsy and unable to focus on anything.  My sudoku puzzle remained in a state of half-arsed completion with several numbers crossed out, a sign that I really wasn’t at my best.  Unable to concentrate on reading or puzzling I instead turned my attention to eating and happily accepted all the sandwiches and biscuits that came my way.

An hour or so into my main infusion I started to feel odd.  There was a throbbing pressure inside my brain, a sensation not dissimilar from being in a plane during take-off.  The inside of my ears started to itch unbearably, and my throat felt as though it were closing in.  Funnily, it didn’t occur to me that I was experiencing side effects from the drug, after all, I’d not felt these ill-effects at my last infusion.  But of course, this was a much larger dose given at a greater speed.  As my favourite nurse, Mary, passed by the room in which I sat alone I flagged her down, and before I even had a chance to say anything she was getting ready to turn the drip off.  Apparently, these side effects are common and pass fairly quickly once the infusion is stopped.  After a half hour break the infusion resumed at a slower rate and I was left to enjoy a few more hours of peace before I was good to go.

I went to bed as soon as I could on returning home, tired beyond belief but happy that I’d made it through my infusion and won’t have to return for another 6 months.

3 thoughts on “Drugs, Drugs, Glorious Drugs

  1. After realising my magic daily pills (Gilenya) are no longer doing their job, I’m relieved to read a true and honest appraisal of Ocrevus as I’m about to embark on this journey. Thanks Emily, you legend!!
    Ps I’m the girl (along with my best friend) with the rainbow dinosaur tattoo in honour of my MS world and because of you 🦖🦕🌈🌈

    Liked by 1 person

  2. Ocrevus is on the table for me now after being on Tysabri for 11 years, I have been dragging my feet because I want to talk to and hear from real people what they think about changing, (not a podcast from the drug manufacturer) I hope you are already feeling better, please please please keep us posted.

    Liked by 1 person

  3. Following your journey! Thanks for your update! Best wishes


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