Month: May 2018

I’ve got a date!

Well – I’m blown away!

I mentioned just earlier this week that I have been approved for Lemtrada treatment, and today I received a phone call from one of the MS Nurse’s at Salford Royal with a start date for Lemtrada of 11th June. I am so happy at
how quickly I’ve been given a date to start.

So that’s it. The countdown is on!

For the first time in my life, I’m going to be an inpatient at hospital. I feel a real mixture of excitement and nerves at the moment. The adrenaline is definitiely pumping as I think about what this means. It’s moments like this that I
realise that even though I feel mostly ok, I’m not. The treatment I am having is really aggressive. There’s a reason for that.

I think I’ve talked about what Lemtrada is before, but here’s a quick recap:

  • Four weeks prior to treatment I start the Listeria Diet (basically can’t eat/drink unpasteurised products, uncooked meats, pre-prepared fruit and salads, Mr Whippy, soft eggs and
    cheese)
  • Inpatient in hospital. The treatment is five, four hour infusions. One a day. The treatment basically wipes out my white blood cells as they are what’s causing the demyelination / attacking
    my nerves. Think of it like a system reboot of a computer!
  • Following last infusion, sent home with all the antibiotics and a sick note
  • Four weeks later, start monthly blood and urine tests to monitor possible delayed side effects
  • Six weeks later, finish Listeria Diet
  • 12 months later – go in for Round 2!
  • Five years later – finish monthly bloods

That’s a real whistle stop tour of the treatment, but it gives you the general idea.

This is exciting. It’s huge. This treatment could halt my MS, or at the very least slow it right down. There’s even evidence to suggest that it could reverse some symptoms (although this isn’t common).

I’m excited. This is going to be a long five and a half weeks!