Lemtrada: round two, five weeks later

It’s just over five weeks after I finished round two of Lemtrada, and I’m feeling a lot better than I was. I’ve returned to work – well, at least not ‘to’ work per se as I’m working from home. That’s something I was planning to do anyway as part of a phased return, building up gradually to being back in the office, but now because of the coronavirus outbreak I’ve been advised by my MS nurse to work from home for the foreseeable future while my immune system reconstitutes itself.

The first few days after I got home from hospital were tough, and I didn’t get out of bed for a while. The Lemtrada rash turned up the day after I got home, coinciding with a massive steroid crash. All very unpleasant, as the rash itched horribly but the steroid crash made my skin feel incredibly tender so I couldn’t scratch my skin as it was so painful. I found I needed to sleep most of the time in those first few days. But gradually I managed to do more and more, until I was up to getting dressed and coming downstairs.

Over the last few weeks, I haven’t had any miraculous recovery from my MS symptoms – but I wasn’t expecting that anyway. The main thing I’ve noticed is that I seem to have more sensation in the soles of my feet, which happened after round one as well. Very strange. I’ve read that the recovery after round two is quicker than after round one, but I haven’t found that to be the case. Knowing what to expect has made it easier, I suppose, but I’ve felt as tired – if not more – than last time. I’ve gone back to work earlier than last time but that’s mainly because I’ve been really bored, and there are some things I wanted to get on with.

My energy levels have been very variable so it remains to be seen how well I’ll cope in the longer term. I’m just going to have to take it one day at a time. In the very strange times that we are living through, that seems to apply to everything and everyone.

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