Ocrevus checklist

I’ve just had part 1 of my initial Ocrevus infusion. Beforehand, I asked the MS community on Twitter for their top tips for infusion day and I thought I’d combine them with my observations so that I can share them here.

This may be useful for new Ocrevus patients, and I’ll also refer to them myself as a checklist every six months on top-up as, knowing me, I’ll only forget otherwise.

Packing a bag

What to include:

  • Your appointment letter on the off chance that the hospital staff stare blankly at you and claim they’ve never heard of you.
  • A facemask and hand sanitiser. You’re clinically vulnerable and actually need to isolate for two weeks after infusion day so don’t risk picking anything up from anyone else, and don’t pass anything on to the hospital staff either. You may not be able to attend without a mask in this age of covid, anyway.
  • Sweets and snacks to counteract the steroid taste. I didn’t get a metallic taste on infusion #1 but I think it’s a good idea for keeping up blood sugar anyway.
  • A cold drink in a bottle to keep hydrated (counteracts headaches). Water is fine but squash is probably better for the same reasons as the sweets.
  • Something simple to keep you amused because it’s a long day. I packed a fully-charged tablet (mainly to save my phone battery for sending essential messages). Hospital guest wi-fi was easy to log into and didn’t require a password. It’ll also give you something to look at, so you don’t spend the day avoiding eye contact or pretending to sleep. Don’t pack a book – I packed a Haruki Murakami and found it frustrating and impossible to concentrate on it after one page.
  • Headphones for the tablet. Maybe download a film or a playlist from Spotify or similar.
  • A sandwich / lunch. NHS sandwiches are certainly something to write home about, but not in a good way unfortunately.
  • Walking stick / mobility aid / catheters
  • Your appointment letter might tell you to bring your old medication. Don’t bother. The nurses seemed a little frustrated that no one had bothered to delete that sentence from the letter.

The day itself

  • Take a day off work for the day after the infusion. Hopefully you won’t feel ill but you will feel tired and, let’s face it, how often since your mid-twenties have you taken a day off work just for yourself. You’re likely to be up late with nerves the day before and up late again on the day itself from the steroid rush.
  • Get all your blood tests done within two weeks of the infusion. If you don’t (I didn’t) they do them all over again on the day and you’ll be waiting for the results while everyone else is merrily having their infusions.
  • Have a friend or family member give you a lift to the hospital and arrange a pick-up point for afterwards. You’ll probably feel fine afterwards but it’s not guaranteed, and you’ll be in no mood for negotiating city traffic / car parks etc.
  • Establish what time you’ll be finished and text that through to your chauffer as they may need to alter their schedule accordingly. If the nurse looks at your drip and says you’ll be finished at 3.30, you will be finished at 3.30, guaranteed. They’re the expert here.
  • Aim to arrive early, if only to bag the best seat by the window (see pictures) but also so you can provide a sample
  • Drink a load before you get to the hospital – apparently it makes the veins stand out better and gives your needle wielding nurse something to aim at.
  • Don’t go for a wee until you’re handed a pot for a sample. The sample is a necessary part of the day to eliminate infections and so forth, so if you turn up with an empty bladder you’ll just prolong things.
  • If they’re about to hook you up to the drip, go for another wee (easier if you catheterise, admittedly) as you’ll be stuck to your chair for a few hours. It’s also a good idea to stretch your legs, particularly if, like me, you’re prone to leg spasms. Remember, there’s no need to be embarrassed about your weak bladder – you’re in a room full of people with MS after all.
  • Accept all cups of tea / coffee that come your way. You need to stay hydrated. If you need a wee, they can always unhook you.
  • When the lunch trolley rolls around, you’ll probably refuse the sandwich in favour of the one you’ve made and brought with you. Do not UNDER ANY CIRCUMSTANCES refuse the cake (unless you’re gluten intolerant / allergic). You’re having stuff pumped into your bloodstream to kill your B cells so screw the diet; no-ones watching; you deserve the cake and it’s the only tasty thing they’ll bring you. Plus, what I said earlier about sugar levels etc.

After the infusion, they’ll hook you up to another bag full of saline, just to flush the last of the Ocrevus into your system. This doesn’t take long. When it’s all in, you’ll bleed back into the tube a little bit and the nurse will come and unhook you. You can now phone or text your lift to tell them you’re leaving on time and you can be on your merry way.

So those are my tips for dealing with the day. During the day, you will have your blood pressure monitored and your temperature taken on a regular basis, and the nurse will be in to see you often to press a button on the machine that feeds you the drip to stop it bleeping. This breaks things up a little bit so the day doesn’t actually pass as slowly as you think it might.

It’s quite straightforward really and afterwards you’ll have that glow from being a super-special member of the Ocrevus club for the next six months at least. Enjoy the ride!

Gloves off

Well, I knew I’d be tempting fate to say that I was feeling fitter and more mobile. It seems that the old MonSter has found a chink in the armour and has left its footprint behind in the form of a few new spots on the MRI.

My neurologist has decided to advise exactly what I wanted him to do which is to nuke the f**ker.

Even though they’re four or five small lesions, he’s decided that because I reported an increase in disability (decreased mobility) at our online meeting last autumn, we should take no prisoners.

He basically handed me a menu and asked what I’d like to try.

So, after a weekend reading the excellent info on the MS Trust website, I ended up talking to one of my MS nurses, about my choice. After about 15 minutes of life-affirming chit chat about music, life, Gideon Coe’s radio show, vinyl collecting and so on, my wife decided it was time to roll her eyes and tap her watch and we addressed the matter at hand.

So, in summary, it’s ocrelizumab that I’m going to go with, aka Ocrevus.

I’m choosing it because it’s one of the most highly effective DMDs available to someone with relapsing remitting MS and although it has its side effects – I’ll be compromising my immune system somewhat – that list is relatively short compared to the other main candidate Alemtuzumab. It’s the usual trick of deciding what’s effective and balancing the advantages against the disadvantages and the likelihoods against the will-never-happens and ocrelizumab tends to float to the surface more often.

There are a few bits and bobs to go through first. My neurologist needs to apply for funding and I need to provide some blood so they can do the usual liver and white cell measurements plus a few new ones such as a thyroid test and then it’s just a matter of getting booked in for the infusions. I’ve had my Covid jabs as well, so that’s a major hurdle over with.

Initially it’s a case of having the meds dripped into my vein over the course of a day and then returning for another session a week later. After this I need topping up every six months or so. And that’s it! No setting reminders on my phone; no room taken up in the fridge by boxes of needles; no worrying about packing for holidays. I’ll just turn up at the hospital on time and have a sit down for a few hours twice a year while I get pumped full of B-cell killing nastiness and Bob’s your uncle. I can even legitimately take it easy for a couple of days afterwards as the initial side-effects apparently take a while to wear off.

So, the potential side effects for me range from the less serious infusion reactions (the team at the hospital can slow down or stop the infusion if they feel it necessary) to the more serious ones involved with what will, after all, be a weakened immune system. I’ll be more prone to infections, particularly of the respiratory tract, for instance, so I’ll have to watch out for any persistent coughs, breathing difficulties and so on.

There’s also a minutely small chance of getting Progressive Multifocal Leukoencephalopathy (PML), a rare brain infection that the MS Trust reassuringly tells me usually leads to death or severe disability. I’ll know what to look out for though. I’ll be looking out for brain-related wrongness, or in other words, symptoms that sound like MS. Nice and easy.

So, there we have it. It’s been a while since I last had my defences breached so I feel reassured that we’re responding quite aggressively, and I also feel reassured that we’re not looking at Secondary Progressive MS which is what I had feared. To find out that there’s new activity on your scan, despite your best efforts at keeping the MonSter at bay, can be so deflating, but a plan of action does give a real confidence boost… Bring it on!