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10 things I wish I'd been told about Lemtrada treatment for my MS

Joanna Livermore Image.jpgIn her latest blog, MSer Joanna talks about her first round of Lemtrada and reveals what made recovery easier for her.

Back in June 2018, I had my first round of Lemtrada. Here’s all the things I wish I’d been told beforehand!

1. Drink

Drink as much water as possible, and I'm talking in excess of 3 litres a day. Take cordial to make it easier to drink. Especially as when that awful steroid taste gets in your mouth, water is almost unbearable. Keep asking the nurses for top ups. It helped keep my body temperature and blood pressure down, and held any headaches at bay.

2. Mint imperials are your friend!

That steroid taste is awful during the infusion, but does go afterwards. Mint imperials helped a lot. Take a couple of bags with you. You won't regret it.

3. Get outside

I found it helped if I could get out in the fresh air. You're not bedbound during your stay. Stick around during your infusion, but it helps to get outside even just for half an hour at some point that's convenient.

4. Keep busy

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.

5. Try and retain normality

Every morning I had a shower and did my hair and make-up. Having a bit of a routine made me feel normal. Keep this up during your recovery too. It really does help your mental health.

6. Steroid crash

I only took steroids on day 1 to 3 of my infusion. Because I hadn't had steroids before the Lemtrada, my body had a hissy fit. You might have some kind of emotional crash. Just to add insult to injury, you'll probably break out in what looks like hives. Don't touch them. It's not that itchy unless you make that fatal, first scratch.

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. Nobody's going to call you a hero for soldiering through. They'll probably say you're stupid if you do that!

8. Questions

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 talking to other people that "get it".

9. Plan ahead

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. Whilst in hospital, get ahead of the game and schedule a home delivery.

10. Rest

Rest. You're going to have good and bad days. You might feel like you're having a "pseudo relapse" with every symptom you've ever had flaring to it's worst. You'll have a good day then pay for it the following day. Be gentle on yourself. It's not a miracle cure, you won't suddenly be OK overnight. Things might take a while. But it'll be worth it.

You can read more from Joanna on her blog ms-understood.com

Learn more about Lemtrada in our DMT Choices leaflet

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