I’m now almost a week past my last infusion and have had some time to reflect on what I wish somebody had told me before going through it. So for anybody who’s thinking about going for Lemtrada, or is anxiously waiting to begin (or just curious!) here’s my Top 10 tips!
1. Drink all the water
I cannot emphasise how important this is. Drink as much water as possible, and I’m talking in excess of 3 litres a day here. If you’re not keen on water take cordial to make it easier to drink. Even if you do like water, still take cordial as when that awful steroid taste gets in your mouth, water is almost unbearable. You don’t need a bottle as you get a cup and a jug, but I personally find that if I drink out of a sports cap, or those bottles with a straw I drink loads more. Don’t ever be afraid to ask the nurses to top your water up. They know how important it is for you to drink. It’ll keep your body temperature and blood pressure down, and any headaches at bay. And the countless trips to the toilet give you something to do!
2. Mint Imperials are your friend!
On the subject of that steroid taste, it’s awful during the infusion but does go afterwards. Mint imperials help a lot. Take a couple of bags with you. You won’t regret it.
3. Get Outside
This is especially important if you’re an inpatient. You’re not bed bound during your stay. Stick around during your infusion, but get outside even just for half hour at some point that’s convenient. The nurses won’t want you to go far – they have obvervations to do on you and stuff but find the right time and you can get yourself an hour or two of freedom within reason.
4. Keep busy
I know this seems obvious but take a variety of entertainment. Some days go quicker than others but there’s only so much of the comings and goings on the ward that you can watch before you need something else. Watch that series you’ve been meaning to watch on Netflix, write someone a letter or do a crossword. Even if you prefer to read books, audio books were a god send to me as at times, I felt too exhausted to hold a book or read the words on a page.
5. Try and retain normality
Every morning I made a point of having a shower, doing my hair and doing my make-up. Having a bit of a routine helped keep my spirits up and made me feel normal. I’ve kept this up since coming out of hospital too, so I’m trying to have regular times of getting up, meal times and going to bed. It really does help your mental health.
6. The crash and the rash!
You only take steroids on Day 1 – 3 of your infusion. So on Day 4, when your body doesn’t get steroids before the Lemtrada it has a hissy fit. You’ll have some kind of emotional crash (in my case regular teary outbursts throughout the day). Remember, none of it is real and it’ll all be ok in the end. Just to add insult to injury, you’ll probably break out in what looks like hives. Don’t touch it. It’s not that itchy unless you make that fatal first scratch. Eurax cream, though messy is an absolute god send.
7. Don’t suffer in silence
Us MSers are used to putting on a brave face. We rarely feel 100% but for the most part we shrug it off. But you do not need to be superman or woman when you’re in hospital. Have a rash? Accept the IV piriton. Have a tight chest? Take the nebuliser*. Have heartburn? Drink all the Gaviscon you can get out of them! Nobody’s going to call you a hero for soldiering through. They’ll probably say you’re stupid if you do that. The nurses want nothing more than for you to be comfortable. They’ll give you fans, blankets and sleeping pills. You’re doing something huge. Make it easier for yourself.
8. Ask questions!
No question is stupid. Ask all the questions. Continue to do so when you come out. Use the #Lemtrada hashtag on social media to find other people in your shoes. If you’re in the UK, join the Lemtrada group on Facebook. Keep on learning and asking questions because you will never ask enough or the right questions before treatment. Loads more will crop up daily. Being able to reach out to someone who’s been through it too might get you a quicker response than trying to get hold of your MS Nurse**
9. Do an online food shop
Really. The last thing you’ll want to do when you get out is go to the supermarket. You’ll think you can, but after 20 minutes you’ll probably realise it’s the worst idea of your life (along with agreeing to Lemtrada***). Whilst in hospital, get ahead of the game and schedule a grocery shop for when you’ll be home. Think about what meals you’ll actually be bothered cooking all the while remembering the Listeria diet.
Rest. I mean really rest. You’re gonna have good days and bad days. You’ll feel like you’re having a “pseudo relapse” with every MS symptom you’ve ever had flaring to it’s worst. You’ll have a good day, overdo it, then pay for it the following day. Be gentle on yourself and know that there is a reason you’re doing this. It’s not a miracle cure, you won’t suddenly be ok overnight. You get two rounds for a reason. It’s a two year treatment so things might take a while. But it’ll be worth it.
* Post nebuliser shakes are scary and completely normal but not something I knew about, and I wish I’d been warned. So take this as a warning!
** Knowing of course that Joe Bloggs on social media is not medically trained but if your question isn’t medical then they can probably help
*** I’ve had my moments wondering why the hell I’ve done this. My MS isn’t THAT bad. But I don’t want to find out what it would be like if it was. That’s why I’m doing it. I’m connected with roughly 1000 other people in the UK who have had or considered Lemtrada, and I’m yet to find a person that regrets it.