At last it is the first day of Lemtrada, and it was another day of waiting – I had to give up the room I’d been allocated on my own, and move to a four-bedded bay as there were no free beds for a man who was moving into the ward – all the bays are single-sex and the only space was for an all-female ward, so I drew the short straw… It’s not a problem, everywhere here is fairly quiet and peaceful.
At 3.30 I was given some paracetamol, and – I think – an antihistamine. I wasn’t paying a lot of attention at this point. Then the steroids were hooked up for a while – the bad taste in the mouth I had read about is REALLY bad. I was glad I’d brought loads of sweets to suck.
And then, maybe half an hour or an hour later, I looked up at my drip stand and there -shrouded in black – was the bag of Lemtrada connected up to my cannula and dripping away.
When I was given the steroids I started to feel a bit ‘spacey’, but since the Lemtrada I feel decidedly odd. Just irritable and finding it hard to concentrate. My walking’s got a lot worse too. Maybe because I only got four hours sleep last night, maybe a psychosomatic reaction, or maybe the Lemtrada. Anyway I’m not massively feeling like writing right now, I think I need to rest.
I’m getting sleeping pills tonight because I was given steroids so late, so I really hope they work. Day one: done. There’s no going back now.