Lemtrada: my top tips

I can hardly believe it but it’s almost a year since I had the first round of Lemtrada treatment for my relapsing-remitting MS, which means it’s nearly time for round two.

The time has flown by, but strangely it feels as though my treatment was a lifetime ago, almost as if it happened to someone else. I guess I just haven’t really thought about it since it was over and life got back to normal.

Lemtrada hasn’t had a dramatic effect on my symptoms, at least not to me. But recently I saw an old friend for dinner and he remarked as he was leaving that I was ‘back to being the old Rachel’. I was pleased but somewhat taken aback as I hadn’t realised that I’d stopped being the old me. And I don’t really feel any different. But maybe the change has been so gradual I haven’t noticed it. In any case I’m clinging on to these small signs of positive change and they are buoying me up – the future looks a lot brighter than it did a while ago.

Now I have an admission date for round two of Lemtrada I’ve had to start getting ready to go back into hospital, and realising that it would have been really helpful if I’d written the blog post about what to take to hospital if you’re having Lemtrada treatment that I intended to write but then forgot about. So I’m going to write it now in the hope that it’s helpful for someone else who’s having Lemtrada. I was an inpatient when I had my treatment, and some people have their treatment as a day case and return home each night, but most of the things on these lists are still relevant to them.

During treatment

  • Eurax cream for the Lemtrada rash. The hospital should give you anti-histamines when it happens but this will help to ease the itching.
  • Earplugs, because hospital wards are noisy 24 hours a day and you really need to get as much sleep as you can.
  • Eyemask – as above, the lights are never all turned off and if like me you need total darkness to sleep you will struggle.
  • Comfy clothes – while you’re having the Lemtrada infusion you’ll be mainly confined to bed or a chair for hours at a time, and you won’t be feeling great, so soft clothes that you can lounge in are the best to wear.
  • Blanket, because though hospitals are supposed to be hot all the time sometimes they aren’t (e.g. the ward I was in where the window was open all day in February!) And if you don’t feel great you might just want to cocoon yourself in something soft and warm.
  • Sweets to suck during the infusion to counter the horrific taste of the steroids, because even though they’re given intravenously they still give you a really nasty taste in your mouth. Bizarre.
  • Savoury snacks to munch on as the steroids will make you crave savoury food. Healthy if you can, I suppose, though I decided that if I put on loads of weight during treatment I’d just deal with it when recovered. Sometimes you just have to cut yourself some slack.
  • Squash to add to the copious amounts of water you have to drink while you’re having Lemtrada – about 4 litres a day. Plain water gets boring pretty quickly.
  • Books/electronic devices to keep you occupied during the long and very boring hours before and after visiting time.
  • Notepad and pen to write down anything you need to remember to mention to the nurses and doctors, or just your thoughts and memories of the experience if you want to keep them!
  • Toiletries and a towel so you can have a shower every day, which will make you feel a lot better.

After treatment

And another list for when you get home, something that hadn’t occurred to me at all before treatment meaning we had to stop off at a supermarket on the way home from hospital to pick up the things I needed.

  • Anti-histamines (just bog-standard hay fever tablets that you can buy off the shelf) as the rash might reappear over the coming days.
  • Paracetamol to take if/when your temperature spikes. The thing I most wish I had known before I had treatment, because it would have saved me a few massive panics, is that if your temperature goes above 38 degrees Celsius in the days after having Lemtrada and isn’t brought down by paracetamol you need to seek medical advice. But it’s normal for your temperature to spike a few times after Lemtrada so don’t panic that you’ve been infected with something if it happens, just keep an eye on it.
  • Thermometer to monitor your temperature. As above, just keep an eye on it but don’t panic if it goes up suddenly, it’s normal and as long as it comes down again after paracetamol nothing to worry about.

If you’re reading this because you’re preparing to have Lemtrada, please try not to worry about the treatment – I had built it up in my mind over months of waiting into something scary, but it really wasn’t that bad. And the effects, subtle though they are, have definitely been worth it. The main thing is that I haven’t relapsed since, and if that continues then it will have given me back a lot of my life that I thought I’d lost forever.

Read more about my Lemtrada journey:

14 thoughts on “Lemtrada: my top tips”

  1. Good luck! I had my 2nd round of Lemtrada in August 2019, and it seems to have worked really well. I certainly did not feel as rough just after round 2, but then I guess I knew what to expect and avoid (eg, I knew that the really strong antihistamines would make me feel like I was having a relapse…)
    Great hospital tips, incidentally. Especially the savoury snacks – the steroids pushed my blood glucose levels up (am not diabetic), so I had to give my Percy Pigs to the nurses!
    Hope all goes well for you x

    Like

  2. Liked your blog, Rache. Iā€™m sure it will help people who are going to have this treatment.

    Sent from my iPad

    >

    Like

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