Lemtrada: round one, day two

My last two entries were quite short and I didn’t go into much detail because I was tired and a bit too spaced-out to get my thoughts in order. So I’m writing this a bit earlier in the day, and hopefully I will remember all the things I meant to say!

I’m now hooked up to my second dose of Lemtrada. You can see my drip in the picture above, and my immediate observation is that it appears to be either the fashionista or the bad fairy of the intravenous drugs world. That is, late to the party (turning up after the paracetamol, the antibiotics, the antivirals and the steroids have been administered), and cloaked in black. A pair of sunglasses probably wouldn’t go amiss, or a black pointy hat.

Time will tell whether Lemtrada turns out to be a bad fairy; so far I feel OK. A bit odd, but that’s it. A touch of a headache though I had paracetamol before the infusion started, maybe it would be worse without. As per the useful advice I’ve found on the Facebook Lemtrada page, which I heartily recommend to anyone having, or thinking of having Lemtrada (search for ‘Lemtrada (Alemtuzumab / Campath) UK & Ireland’ – it’s a closed group so you can post with impunity as none of your Facebook friends will see it) I’ve been drinking my own body weight in water every day, so that might be helping too.

When I’m back home, I will post a list of what I brought into hospital, what was good to have and what I didn’t really need. A sneak preview – I’ve already eaten multiple packets of Mentoes to get rid of the steroid taste so sweets are something I couldn’t have done without. I brought a blanket, which was good as even though every time I’ve been in hospital previously it’s been really hot it’s actually been a bit chilly on the ward here at times so I’ve been glad of it. An eye mask has been great because they don’t switch the main lights off on the ward until really late, and I’m finding I need to try and get to sleep at about nine.

Talking of which, last night I was given a sleeping tablet after having steroids quite late in the day, and I did get a reasonably good night’s sleep although I did wake up in the night for a time. I have used the Calm app on my phone before as like a lot of people with MS I find it difficult to get to and stay asleep, and found it helpful, so I used that to get back to sleep. I would really recommend having something like this, and I think there are plenty of apps to help with sleep for any smartphone you have, to tune out the sounds on the ward. It is quite peaceful but the staff are working all night so there’s inevitably some background noise. I always find it especially difficult to sleep when in a strange bed, in a strange place and this app, which features relaxing music tracks and audio stories, is very helpful to switch off my ever-active overthinking and lull me to sleep. I listened to a story about the Orient Express last night and then had a great dream that I was on it, which was a bonus!

I had thought I would try to stay active while having Lemtrada, leave the ward and have a walk around each day, but in practice I just haven’t wanted to. I’m always worried I’ll miss my obs being done (someone comes every four hours to take my blood pressure, heart rate, and temperature and then every 30 minutes during the infusion), or picking my meals, which seems to happen at random times during the day, or a visit from a clinician. It is obviously boring, but I’ve actually found it quite pleasant to just sit and read a book and listen to music on my headphones.

So all in all its going OK. This is just the beginning, but I am feeling hopeful and looking forward, after having my life on hiatus waiting for Lemtrada for so long, to getting it done and moving on.

Read more about my Lemtrada journey:

11 thoughts on “Lemtrada: round one, day two”

  1. Dearest Rachel these blogs are heart rending and heart lifting in equal measures. They are also incredibly illuminating about your journey so far and I am mortified that as your parents we failed to see the signals or recognise your symptoms so that we could have supported you better.
    I am so very proud of you and know you will meet this challenge with flying colours as always.


    1. I didn’t realise the significance of my symptoms myself for many years, and then I got very adept at hiding them!

      I’m very grateful for all of your support which is invaluable! I love you both very much xxxxx


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