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!

Eye and blood appointments

I went to see the opthalmologist and orthoptist last month as a follow up to my December 2009 appointment. It took 65 minutes of waiting in a waiting room  before I was eventually seen.

Everything is fine with my eyes – pressure, field test, colour vision, optic nerve are all OK. Yes, I have had optic neuritis in the past but it has healed to such an extent that the opthalmologist said she couldn’t have told I’d had it, prior to me mentioning it.

“I have never known any MS patient go blind from optic neuritis …Not permanently …Not yet” were the opthalmologist’s words of comfort.

Apparently my pupils are sluggish to react to light or it’s absence, but are sluggish at the same rate, so I don’t notice.

I’m also assuming my blood is OK after not hearing anything about the routine blood test I had last month.

I guess the next medical appointment I have to look forward to is a trip to the big city in June to see my neurologist.

The morning after… groan!

I felt very rough this morning. All my joints ached and I even felt a bit nauseous. I injected at 10.40ish last night. I woke at around 2am to see to one of my children when I felt groggy with sleep but fine otherwise. I finally woke up at 6.30 this morning and felt as though I had been hit by a truck. I guess this is the flu like symptoms. I also noticed I was sensitive to different temperatures. My daughter’s cold hands and the too hot shower water both sent my nerves screaming.

Luckily I had a blood test this morning, so I didn’t have to go to work so early and was able to go back to bed for 15 minutes after breakfast.

My blood made a nice squirty noise as it filled one of the test tubes. Both the nurse and I smiled. She said she’d had an ‘interesting’ morning collecting blood from the mental health wards saying she was always a little worried in this situation – that there might be gruesome noises to freak the patients out.

A combination of ibuprofen and paracetamol are helping me ride it out. My next injection is due on Christmas Eve, but I might delay this by a day – I don’t want to be ill on Christmas morning.

Double trouble?

My jobs for this evening include stripping wallpaper, bathtime and bedtime for the kids, wrapping Christmas presents, going to the supermarket to stock up on festive goodies, shifting the sofa and covering it with dust sheets ready for the plasterer… oh! and shooting up with Rebif (left thigh night tonight).

Well it’s full dose time, today. After a couple of weeks of Beta Interferon at 22 micrograms, I double it to 44 tonight. From what I have read on discussion boards etc, the side-effects should start kicking in from now on. Hurrah! I have already experienced the achey joints and the hot flushes – will I get them twice as often? Will they be twice as bad? Will I start getting the injection site reactions I have heard about?

Probably none of the above.

Only time will tell, of course.

Typically, I have forgotten to attend this morning’s scheduled blood test and have apologetically re-arranged it for first thing tomorrow morning – the ‘morning after’ so to speak. Also, typically, the next injection is on Christmas Eve.