So today I finished Round 1 of Lemtrada and I thought I’d share how the whole thing went down for me, first I’ll just say, it was much easier than what I ever thought it would be. So anyway here’s what happened during my week of Lemtrada.
Day 1 – Arrived at the Hospital at about 8am and got all checked in and had my first set of pills, unfortunately, as anyone else will tell you, Monday is the longest day for this due to so much needing to be sorted out. Steroids finally got started at about 11-11.30 and this took about an hour then at around 2pm I finally got started on Lemtrada. No real side effects except for a slight headache which cleared up in a matter of minutes, then about 7pm the flushing began, unfortunately, while being monitored I was told my heart rate was up so needed to be checked over again during the middle of the night. All in all, easy day, just very boring.
Day 2 – Very little sleep but managed to get started on the steroids at about 8.30am which meant I would be done much earlier than the Monday, no issues here, everything went smoothly, in fact it was going so smoothly I’m beginning to wonder if anything was happening.
Day 3 – Pretty much same as day 2 except I was starting to feel really tired due to the lack of sleep and the lovely Lem-Rash made its first appearance but nothing major, cleared up pretty quickly once the Lemtrada was done. All in all happy with my progression.
Day 4 – I can barely keep awake and Lem-Rash is back with a vengeance, all over my arms, face and legs but again disappeared fairly quickly once Lemtrada was done, the night was horrible though, slept for a few hours between 6-8pm but could not sleep at all during the night, 2am was woken up with this insane itch on my arms and hands, so please if you’re getting this treatment, take some cream or something, I can’t stress this enough.
Day 5 – The final day, again I’m so tired but not itchy (thank goodness) they get me started at 7.30am which means I was out the Hospital by 3.30pm, barely anything to report for this day, rash never really came back, was just nodding off, felt a bit loopy because at times I didn’t know what I was saying and again just bored as I just wanted it done.
So as you can see, my main problems were tiredness and the rash, all in all I’m definitely happy I went through with this as the rash is already nearly gone and hopefully I’ll get my sleeping pattern back in order, if you ever have a chance to get this treatment, I’d say go for it, the process is relatively easy and now I can rest easy knowing I’ve told this MS I’m not about to let it take over my life.
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