I’m home now, in my bed, where I intend to stay for the next couple of days. I slept well last night but woke at 6am with my mind racing – the steroids are obviously still affecting me. I’m not looking forward to the crash when I don’t get my steroid fix today!
I feel OK, very tired and still a bit out of it but my temperature hasn’t been spiking the way it did last time after I got out of hospital. No rash yet, though I have a few itchy bumps on my arm that are a bit suspicious…
Day three went as smoothly as day two – steroids in at 10am, Lemtrada at 10:30am, infusion finished at 2.30pm then four hours monitoring, handed a big bag of drugs and a discharge letter and I could go, after they’d let me wolf down the supper that they’d brought me. The letter showed that a blood test I’d had that morning showed my lymphocytes were at 0.07, down from 0.86 on Monday when I was admitted. After day three’s infusion I’m confident they would have been 0, so Lemtrada did what it was supposed to.
And on the subject of that big bag of drugs I’ve had to decant it into my pill dispensing boxes so that I remember to take them all when I am supposed to. For the next four weeks I have to take a massive antibiotic tablet three times a week, and antiviral tablets twice a day, as well as the vitamin d and tablets for fatigue that I take all the time. The antiviral and antibiotic tablets are to reduce the chance of my getting an infection, or the risk of viruses like shingles that are dormant in my body resurfacing while I have no lymphocytes to fight them off.
So, just like that, I’m finished with Lemtrada. If I don’t start relapsing. Which is a possibility? Or probable? I always have a voice in the back of my head telling me not to tempt fate, not to get too confident, but then my MS Nurse came to see me when I was in hospital yesterday and said all her Lemtrada patients are off MS treatment now, up to 4 years on (off DMTs, anyway). So maybe it’s more likely than I am comfortable to let myself believe.
If Lemtrada works it means no more relapses and no more damage to my nerves, but I’ll still be living with MS, with the disability it’s given me already – the walking problems, fatigue, poor memory and all the rest. However, if I could believe it won’t get worse from here on in I would be happy with that. But can I let myself believe it? I think I need to train myself to start thinking positively.
Read more about my Lemtrada journey:
- The listeria diet
- The last wait
- Lemtrada: Round one, day one
- Lemtrada: Round one, day two
- Lemtrada: Round one, day three
- Lemtrada: Round one, day four
- Lemtrada: Round one, day five
- Checking in: Three months after Lemtrada round one
- Lemtrada: Round two, day 0
- Lemtrada: Round two, day 1
- Lemtrada: Round two, day 2
- Lemtrada: My top tips