Round 2, Day 3

A better night’s sleep, despite forgetting my amitripylene last night.

Have woken up with a headache again, and noticed a rash on my legs – took some antihistamine 4mg for that – hope it doesn’t stop me getting the 10mg dose later on before I get the alemtuzumab plugged in. Continue reading “Round 2, Day 3”


Round 2, Day 2

It’s R2D2!

I had a sleepless night despite popping amitriptylene last night, could not get off to sleep and legs were twitching really badly, and even when I feel asleep I woke up at 4.30am and could not get back off again. Even so, I don’t feel as tired today as I did yesterday. Partly that’ll be down to the steroid high – partly because yesterday I still badly needed rest after my return from Lundy!

8am – Arrival on time again.

9.45 – Steroids in. I remembered orange juice today as well as my other anti-steroid flavour-fighters, so I’m ready for this!

10.15 – Alemtuzumab in. Just passing the time reading my book and enjoying my window seat as there is a little breeze.

3pm РAlemtuzumab finished and just waiting for the cannula to be removed so I can go home soon.  I have had a slight headache all day but paracetamol seems to be doing the trick again and everything else is fine. Had a little blood taken.

Evening – nothing to report, except that I am feeling a little tired and light-headed if I stand up too quickly. No bother.

Round 1, Day 1

8am – Having had paracetamol at 7.30, I arrived at the Medical Day Unit (MDU) on time at 8am. Nurses are still doing shift handover, so I wait in the waiting room for a little while before settling into Bay A with all the other MS patients (it’s Tysabri day – I am the only one having alemtuzumab – it was the same last year as Monday is Tysabri day and alemtuzumab is not commonly given here in Gloucester Royal).

9am – I am settled in and the steroids are flowing. The taste is here already – but I’m well equipped with sugar free mints, chocolate and bacon wheat crunchies for later. I forgot to bring any juice to flavour my water – pineapple or orange are best for the steroid taste.

10am – Piriton on board and alemtuzumab dripping. I am stuck here for 4 hours now. My first cannula got dislodged through fidgeting and the second has been taped thoroughly in place. I am a devil for fidgeting! I have it in the back of my hand as I hate having to keep my arm still and straight if they put one in the elbow…

12pm – Feeling tired now with the effects of the Piriton. Got my sandwiches with me and eating chocolate and mints for the steroid taste. All going OK, although I am up and down to the loo with my dalek (christened Doris) in tow. I’ve got a book to read, and an audiobook on my phone as back-up and, of course, my laptop is connected to the hospital Wi-fi. Everything is awesome.

2.30pm – All done with Day one! The policy says wait around for 2 hours after the infusion has finished in case of reactions but Richard has given me permission to leave after an hour so I’ll be off home soon.

Evening – an uneventful first day, with a very slight headache that seems to be OK with a couple of paracetamol as needed. I did get an itchy ankle in the evening but I don’t think that was the rash – I did pop an anti-histamine just in case though.