Checking in: three months after Lemtrada round one

The peonies in my garden are flowering for the first time since I planted them three years ago, so there’s no doubt summer is almost here. The last three months since Lemtrada have passed in a blur, and I can’t quite believe we’re more than halfway through May. It feels like a good time to write about how I’m feeling.

I was told not to expect any dramatic changes in my condition after Lemtrada, that all I could hope for was a lessening in relapses and a slowing down of progression in the long-term. Nevertheless I had read stories of people who experienced a dramatic improvement in their symptoms straightaway, but as expected that hasn’t happened to me and my walking is impaired to just the same degree as ever. I think I might be a bit less tired, but I find it so hard to tell. Most importantly, apart from constantly getting colds, I don’t feel worse. Apart from the first few weeks, I’ve felt generally well. My lymphocytes had increased from 0 straight after treatment to 0.2 at my first monthly blood test, so hopefully they are continuing to rise and I’ll soon be able to fight off the viruses I encounter more efficiently.

I’m back to doing Pilates classes, and back to work, so normal routines are being reestablished, which feels odd but comforting after a year of limbo. Best of all, I’ve finally been able to stop the Lemtrada diet, the strict anti-listeria diet that everyone having Lemtrada has to follow for three months before and three months after treatment. Since May last year I haven’t known when I would have Lemtrada, so I’ve had to stick to it all that time. It hasn’t been easy, and I’m going to write a post about it to share the rules I followed and what I ate when I get round to it.