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!

Copaxone changes

Thanks to a comment from HoneysuckleB on a recent post, I rang my MS nursing team at big-city hospital to find out if I could switch from the daily Copaxone injections to the three-times-a-week version.

The reasoning behind this is a fairly straightforward one: rather pathetically, I’m dependent on my Outlook calendar at work to remind me to inject.

It actually has a dual purpose. I currently leave work at 3pm, so I set the reminder for then just so I know it’s time to go home. I’ll then ‘snooze’ this reminder for an hour or two after I’ve left the office. When it pings up at the start of the next day, I’ll pop the injection while I’m waiting for the day to start and the kettle to boil.

It’s a seemingly faultless system. It falls down, of course, on the days I’m not at work.

I don’t know how crap my memory is. I like to think I’m still OK but surely it says something when you can take an injection every day at the same time for five days of the week and then completely forget about it for the other two.

And let’s not forget that when I cook at home, make a cup of tea or want to put some marge on my toast in the morning, I have to move that box of Copaxone to one side to reach various items in the fridge.

It couldn’t be more in-my-face, but I still forget to take it.

Anyway, the MS nurses said yes, no problem, and they’re altering my prescription accordingly.

If I were to faultlessly take my medication, the daily shots should deliver 140mg of medication into my system. The three-times-a-week shots will deliver 120mg (with no loss of effectiveness).

I knew the new dosage has been available in the States for a while, but hadn’t realised it had come over here until HoneysuckleB’s comment, so thank you HoneysuckleB!

My MS History – Part Six

After one more session of double-checking with the consultant where he had yet another student in tow – it seemed I was becoming a textbook example of nystagmus – it became apparent that the steroids really hadn’t done their job. So to suppress my existing symptoms I was prescribed Gabapentin.

I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using the MS Decisions website, made my choice which I was going to spend the foreseeable future taking…

… and then I made it again.

Rebif it was – sub-cutaneous injections three times a week but with the downer that it had to be kept in the fridge.

Eventually a large box with all the gubbins turned up along with my monthly courier. By all the gubbins, I mean travel cool-bags (one large, one small), rebijector (injection pen), supporting literature, diary, “passports,” sharps bin, injection site cushion (that I could heat or freeze), and the medication itself.

Two weeks at 8mg and two weeks at 22mg, and then I could expect a delivery of the 44mg syringes.

I have been relatively side-effect free, but I did get a couple of instances of flu-like side-effects with Rebif.

The worst day of side effects happened when I had the mother of all hot flushes. One January morning at 6am, I stepped out to my car in just a summer dressing gown, surprised that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.

The Gabapentin, meanwhile, had turned me into a zombie. Not only that, but a zombie who occasionally had disturbing hallucinations.

Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs, for the good of my (and everyone else’s) sanity. I had “accidentally” forgotten to take them for a number of days, and while my hands started to feel as though they were holding a cactus again and my legs started feeling like they were made of lead, I felt more mentally alert and alive. I hadn’t even reached the full dosage.

In fairness to gabapentin, I have since found out that I work with someone with on a much higher dose than I was ever going to take, who said that they have no side-effects at all with it.

I went to see my GP and while he was thumbing through his British National Formulary for a suitable alternative, I told him that I wanted to give Amitriptyline a go. He agreed and I have been on these ever since with no side-effects. They make me a little drowsy late on, but that sends me to sleep nicely. They also help with the leg pain and the tingling.

My MS History – Part Four

I had a job interview in two days time. With a rare evening free of what I called brain fog, I was sitting at home preparing a presentation for it. My wife, unable to take the wait, had earlier phoned my neurologist to press him for the results of my MRI. As I was staring at my notes he phoned me back.

“I have the results of your MRI scan… It shows some inflammation in the white matter of your brain and spinal cord…”

Here comes the bit where they let you break the news to yourself:

“When you saw my colleague, did she give you any indication what it might be?”

“Yes, she said there was the possibility that it could be MS.”

Quick as a flash: “Yes! It certainly looks that way.”

“Oh! – OK!”

So there you had it. It was MS. The consultant – not an MS specialist by his own admission – thought it was nothing to worry unduly about. He told me that there were “only eight to ten large lesions” (only??) visible in the scan and more in the way of tiny “insignificant” ones. I now know that one lesion in a crucial spot can be more debilitating than several lesions spread all over the place. This, he thought, looked like a case of benign MS and that I would be very unlucky if I didn’t go into remission and then get no further flare ups for years. Indeed some people can go for 20 years without a relapse, he told me.

Sighing, he didn’t think it worth me coming to see him at the appointed time the following week, but then conceded that I might have “some questions.” So the appointment remained.

I took the rest of the evening off from job interview preparations.

The following day at work, I broke the news to my workmates.

I had no quandary telling them as I had good working relations with virtually everyone. I have since found that talking about MS can sometimes be the best therapy. It can be an invisible illness, so a bit of awareness raising doesn’t go amiss, sometimes. I figured that it was probably better to be open about any problems I might be having in case I had a bad day, like the day where I had all but fallen asleep at my desk.

Everyone was very understanding and asked intelligent questions. All except my boss who pronounced that she knew someone with MS and that even when he lost the ability to walk it hadn’t changed his life much because (to the whole office, rather than me) “they got him a little buggy!”

I made a mental note that should I get a little buggy of my own, she would top a hit list of people I wanted to hunt down and run over.

I met the consultant a week later. I won’t go into the details of the meeting, except to say that he was uninterested and unengaged. The information he gave me was wrong. Things that I suggested were symptomatic of MS, like my optic neuritis four years previously, he disagreed with. He also said the mood swings I had been experiencing were me and nothing to do with MS.

He sent me and my GP a strange letter where he obviously hadn’t listened to a word I had said and pronounced that my symptoms were getting better and clearing up, which was news to me. It all left me feeling very angry and very frustrated, on top of feeling lousy anyway.

I did get three positive things out of my meeting, though: he prescribed steroids to kick-start the recovery and relieve the symptoms, he referred me to another consultant neurologist (an MS specialist) and most importantly, he made me determined to do my own research, to become an expert in my own MS and to build up a history so that I could stand up for myself and make my case for treatment.

One of the criteria for getting disease modifying drugs in the UK is that you need to have two relapses within two years before they will prescribe anything. All the research seemed to say that the earlier you can get on the disease modifying drugs, the better the long-term outlook.