Lemtrada: round one, day three

Posted on by Rachel

It’s getting a bit like Groundhog Day in here. I woke up at 4.30 this morning and just couldn’t get back to sleep, I think thanks to the steroids rather than any disturbance on the ward. I put my Calm app on my phone and listened to a story about the Nordland Express in Norway, a fantastic-sounding train that travels between Bodø and Trondheim in the arctic circle along the coast and through forests and mountains. It sounds magical and,, like the Orient Express, a train journey I’d love to take one day. I thought that after two pictures from inside the hospital these posts needed a change of scenery, so I’ve put a picture of the Nordland Line train at the top.

I lay in bed waiting for the bustle of a new day on the ward to start which it surely did just before 6am when the nurses came round to check on all the patients and do their obs, and we were asked what we’d like for breakfast – a choice of cereals, and a cup of tea or coffee. I’ve had to get some cereal bars brought in for me as sadly though I don’t normally eat much at breakfast it’s just not enough to fill me up. I think I have steroids to thank for my massive appetite as well as my sleeplessness. I was weighed when I came in, I do hope they don’t weigh me on the way out!

I’ve got up and had a shower each day after breakfast, and I’ve been glad that I have – it’s made me feel much more human. Then I set myself up with a book and music on my phone and relaxed in my chair until the next round of steroids, today at 12pm as they are gradually bringing the start time earlier each day. Lemtrada went in at 12:45pm so it was finished by 4:45pm.

I’ve had time to do a lot of reading in my time waiting for this treatment, and one thing that has stood out is the ‘Lemtrada rash’, a phenomenon where patients receiving Lemtrada come out in a red, itchy rash on about day three of treatment. As today is day three, I’ve been anxiously checking my face in the mirror to see if it’s appearing, but so far: nothing. My MS nurse came to see me – she’s been dropping in every day to see how I’m getting on – I explained that I was glad to still have no rash and she told me that unfortunately 95% of people get it, and as I won’t be having steroids tomorrow or Saturday that is when it will probably kick in. So as well as the steroid crash combo of moonface + spots I can also expect to be covered in a rash at some point tomorrow or the day after… Just as well I’ll be in self-imposed quarantine at home from Saturday, or I imagine I’d be scaring the children of the neighbourhood.

One thing that was slightly worrying me about not having yet had any ill-effects from the Lemtrada was that maybe it wasn’t having any effect at all, good or bad, but one of the neurologists came to see me today to update me on my blood test results (I’ve had blood taken each morning) and apparently these are showing that the Lemtrada is doing its job. I assume this means my white blood cells are dropping at the right rate. After so long trying to get them to increase it feels a bit odd to want them to fully disappear, I just hope they bounce back a bit faster than they did after Tecfidera. All the more reason to come out of hospital and – as soon as I’m feeling a bit better – start getting a bit healthier.

I’ve let a combination of the listeria diet, the limbo state of waiting for treatment to happen, and not being in the routine of work get me into some bad eating habits, and make me a lot less active. I need to sort that out, but that’s for later.

(Image copyright Kabelleger / David Gubler (http://www.bahnbilder.ch) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0)%5D, from Wikimedia Commons)

Read more about my Lemtrada journey:

Published by Rachel

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