I finished round one of Lemtrada a year ago tomorrow, so tomorrow is the day I’m going into hospital to start round two. This time I’ll only have three days of infusions, and according to others who have done it it should be easier. But it still won’t feel great.
I can’t really remember last time round, so I’ve had to re-read the blog posts I wrote last year to try to refresh my memory. It’s funny how fast you can erase these things from your mind. In 2018 my packed case lay on the bedroom floor for nine months, occasionally being unpacked and repacked but this year I only started packing my case for hospital today. I’ve got most of the same stuff this time round, though I haven’t bothered bringing ear plugs – I was paranoid about using them before as I couldn’t hear the nurse trying to wake me for my obs during the night.
This last year has been a bit of a blur and I haven’t been thinking about Lemtrada at all, I suppose I haven’t really wanted to. So it’s crept up on me a bit and I don’t feel prepared at all, though I’m not sure how much feeling prepared would help.
Round two doesn’t feel as scary as round one, when I had very little idea what to expect. This time I know it’s not as bad as my worst imaginings when I didn’t know what I was dealing with, and I won’t feel unwell for too long, which helps. But I do feel apprehensive about some things I hadn’t anticipated last time. Particularly the insertion and repeated resetting of the cannula, which was especially unpleasant last time. But there will be no day five this time, the worst and only really horrible day of Lemtrada last year.
I am intrigued though at how a second round might further improve how I feel. The effect of round one has been subtle but definite, so I hope that round two will sharpen my mind a little more. Fingers crossed!
Read more about my Lemtrada journey: