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”
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 – Alemtuzumab 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.
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.
I feel woefully unprepared this time around. If I think back to the amount of thinking and planning and reading I did ahead of round 1 (not to mention bladder training and listeria-watch!), this time I have been far more laid back. Continue reading “T-1! (with added Lundy)”
I really believe that staying unusually well hydrated helped me to dodge the worst effects of the infusion reactions last year. I also like to think that it helped me to recover fairly swiftly from the treatment by flushing the medicine through my body quickly and generally helping me to stay well and recover well. Continue reading “Hydration and bladder training (Round 2)”
One year after Round 1, here is an updated catalogue of all my symptoms as they stand right now. The idea is to understand whether any of my pre-existing symptoms have changed and what if any new symptoms have appeared. Continue reading “Symptoms – After a year”
Started my prophylactic antibiotics today – same drill as last year, co-trimoxazole three times a week starting a fortnight before treatment and continuing for 6 weeks in total.
Round 2 here we come!