Lemtrada: round two, day two

Posted on by Rachel

Apparently blog posts need pictures, but I couldn’t find a picture to illustrate today so the picture up there ^ is a view of my reading materials for my time in hospital plus the steroid aftermath detritus of an empty Mentoes packet.

After yesterday’s interminable waiting, today ran like clockwork. In fact so much like clockwork that I don’t really have anything interesting to write about. I had breakfast, had a shower and got dressed, then read for a bit and listened to music. My steroid drip was hooked up on the dot of midday, and the Lemtrada at 12.30 so it was done by 4.30. Then I had two hours of observations and I was done. The plan tomorrow is to finish the Lemtrada by 2.30 meaning that after my obs I theoretically could be out of here by 4.30.

I’ve still felt a bit odd and out of it today, though I have noticed a slight improvement to my walking – I think that’s probably more likely due to the high doses of steroids that I’ve been given, rather than an effect of Lemtrada though.

This time round I’ve been much more regimented in the way I’ve regulated my water intake. Because it’s recommended to drink at least 3 litres of fluid during the 4 hour Lemtrada infusion, I’ve brought in a couple of 1.5 litre water bottles which I’m refilling each day, so that I know exactly how much I need to drink and I have a target to work towards: half a bottle per hour. I didn’t really keep an eye on how much water I was drinking last time, and I think that might have contributed to my very low blood pressure on day 5 which made me feel really unwell. I’d recommend doing this to anyone else having Lemtrada – the nurses don’t have time to ensure you’re drinking enough so it’s something that’s important to keep tabs on yourself.

The nurses keep asking me if I have a rash, which makes me think they are expecting me to get one. I wondered whether I might escape that particular aspect of Lemtrada treatment. It happened on day four last time, and there is no day four this time, but I think I can expect it. Maybe tomorrow, maybe when I get home.

Actually I think I’ll be glad if I do get the rash because then that will show that my body is reacting to Lemtrada, and it is doing something. Otherwise, I might get a bit paranoid that I’ve been given a placebo!

It is strange to think that tomorrow might (should??) be the last time I ever have an infusion of Lemtrada. No more DMTs (disease modifying therapies) for my MS – at least for the time being, unless I start relapsing again. I’ll still be taking medication to manage my symptoms but nothing to attack the MS itself. I hope it’s had a thorough kicking, and will stay in remission for the foreseeable future – or forever – as a result.

Read more about my Lemtrada journey:

Published by Rachel

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