I mention Ocrevus quite a lot in this blog. That’s understandable. It’s the first treatment I have ever received for Multiple Sclerosis and, if it does what it should and slow lesion growth, that will be something! A real win! Something to celebrate!
What of the process itself though? Well, actually, it is a little slow. For lack of a better term. Not something that really makes an exciting read. But I’ll have a try…
Building Up to Infusion Day
The preamble to Infusion Day is normally just a blood test. Check for white blood cell levels and any infections that could be an issue when my immune system is depleted. That, and plenty of rest. Unfortunately this time around, my third infusion, was a little more stressful than usual. Nothing from the standard tests, more a scare around another potential disease that came from another blood test.
Sometimes I think the hospital has enough of my blood to keep Count Dracula happy for a year.
There followed more physical examinations and a nice ride in the metal tunnel of the MRI. Something I have been through so many times yet always feels significant, either of good or bad news. This time the news was good. We’ll leave it at that.
The Day Before Infusion
So, happily, back to the normal Ocrevus routine. The day before infusion was very normal, very restful. A short bike ride. Aren’t they all short these days? This one was short but also memorable as it was nearly non-stop, quite something these days. There came a happy interruption as the MS Nurse called to say that my blood test results had been positive so the infusion could go ahead. Happy! Nothing exceptional for the rest of the day, work and then pack a bag for the next day. Unlike the first infusion there was no nervousness, no fear of the unknown. Importantly, need a band tee-shirt. Suede for the last infusions so Libertines this time! Rebellious, eh?
Well, actually, I was quite nervous. To be honest.
Ocrevus Day
D-Day! Or, O-Day! We reached the hospital at around 08:30 AM. The infusion process is scheduled to take the whole day although usually I am able to head home in the early afternoon. Nothing wrong with being prepared in case it goes the distance. That case I packed is full. One book to finish and two new to choose from. An iPad with Netflix loaded and music to listen to. A textbook about drawing. Snacks and slippers.
I have my own room in the hospital ward. The Duty Nurse, a different one from the last infusions but just as nice, starts with pre-checks. Temperature, pulse rate and blood pressure are checked and are all normal. Then the needle goes in and what a needle it is! More of a harpoon! Odd to see it going in to the vein. My arm goes cold as the prednisone goes in. Medication to stop inflammatory reactions. I think that’s what it does. I should know more about what is being pumped inside me. There follows a short wait for Ocrevus to be released by the hospital pharmacy as, once taken out of storage, it has to be used or disposed of. It’s not cheap and some past patients had not shown up for their infusions. Which meant expensive medication had to be thrown out. A shame.
Doing Nothing…
For something as potentially important as the Ocrevus infusion, the day itself passes uneventfully. I just lay there, reading and listening to music. Despite the fact I am doing nothing, my heart rate inches upwards. This is normal as my immune system is effectively being reset and the specific antibodies that are attacking me are being suppressed. As my wife put it, it is like poison going in, taking out an element of the defences. All is fine until I try to stand up and head to the bathroom, wheeling my infusion with me. I actually feel as though I am part of the bed. Sunken in to it almost. An effort, all that weight.
Sleep, read and a change of infusion. The Ocrevus is done and so now there is just flushing out that needs to happen. Of me or the infusion tubes. I don’t know. It’s all cool, man… chill…. feeling a little… stoned? Perhaps? Anyway, when it’s all done, I can go straight home. Not going to share any photos but, believe me, in the mirror? The graveyard zombie from ‘The Night of the Living Dead’ is there, staring back at me. Drowsy, still somewhat stoned. My legs feel heavy, like lead that is in advanced state of corrosion. Heavy but also brittle.
… And More Doing Nothing…
The evening after the infusion and the next day continue on much the same theme. Doing little. Well, actually, it is quite nice. I finish one novel and am halfway through another! By my standards this is something. Sleep. Watching a cycle race on Belgian TV, the Brabantse Pijl. Quite nice for a Friday. I do some gentle stretching but that’s it.
And drinking lots of water. Nothing much to write about.
Active Rest
After a lot of laying around I finally got active on the third day, a Saturday. First to the supermarket. As my immune system is quite compromised I kept my distance although, to be fair, I don’t wander around supermarkets hugging strangers. Well, for once I saw a friend and, of course, we had a big hug. So much for social distancing. Then home and did some easy kilometres on my indoor trainer, nothing too hard although I do need to chuckle about how cool Zwift can make me look like I know what I am doing. Did some painting, some drawing. Perfect for a day of effectively not doing much. A bit of active rest perhaps.
The only downside of so much rest over the last couple of days? I was wide-awake at 4 a.m. on Saturday morning! Whilst an early start is great for beating the Easter crowds at the supermarket I was shattered by 4 p.m.! Another doze, then eat an easy dinner which I ate outside, watching for the first Swifts of the season. Always a personal highlight to see them! Didn’t see any this time, though.
So What Will Ocrevus Actually Do?
All of this laying around, drinking lots of water and doing nothing. What is it actually for? In the end, my immune system has been partially nuked and certain antibodies have been suppressed. What for?
Well, Ocrevus is not going to make me better. Perhaps in my initial excitement I believed it would. What it will hopefully do is slow down lesion growth through dampening a certain type of immune cells that are actually damaging my nervous system, hence the somewhat simplistic comment that it is resetting my immune system. This should, in Primary Progressive MS, hopefully slow progression of symptoms and disability. It won’t repair anything or reverse anything. So, at best, this is a base to build on. Still not getting better.
Is it working though? Well, we just don’t yet know. Ocrevus was only approved in the Netherlands for PPMS in 2019 and my treatment only started when active lesions were confirmed. We are all still learning on this one. More MRIs, more physical checks. Results will come eventually but until then?
Another case of wait and see. After twelve years of MS I am pretty used to wait and see, to be honest.
