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 if you have one 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 a week 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 taste of the steroids they give you pre-infusion. I didn’t get a metallic taste on any of my infusions 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 after one page.
- Headphones for the tablet. Maybe download a film, or maybe a playlist / podcasts from Spotify or similar.
- A sandwich / lunch. The NHS is a marvellous organisation and I thank my lucky stars that I was born in the UK because of it, but their sandwiches are certainly something to write home about, and not in a good way, unfortunately.
- Walking stick / mobility aid / blue badge/ catheters / other MS essentials
- 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 if you sleep at all.
- Get all your blood tests done within two weeks of the infusion if possible. 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 to drive afterwards but it’s not guaranteed, and you’ll be in no mood for negotiating city traffic / car parks etc. The antihistamines they give you to counteract any potential reactions may make you a little drowsy as well.
- 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.
- Remove anything with long sleeves like jumpers or fleeces. I learned the hard way by pulling out canulas by accident. If you’re right handed they put the canula in your left arm. If you pull it out they reattach it to the other arm. It’ll be annoying for you if this happens.
- 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-one’s 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!
* disclaimer: cake may not be available. In some hospitals it may take the form of biscuits. Don’t refuse them, in any case.