Treatment Part 2 – Lemtrada Round 1
After choosing Lemtrada, it was off to the hospital for Round 1 of my two treatments.
I had the pre-treatment checks just before Christmas 2018 and the seven weeks between then and treatment crawled by. Come the scheduled Monday morning in February, I packed my bag and headed to Ward 68 at the QEUH for five days.
As part of the admission process, you are taken through a lengthy list of questions. Allergies, habits, religious beliefs, favourite food, any foods you don’t like and so on. With that out of the way it was onto the glamourous practicalities – “can you pee into this cardboard tube please?”. A urine test was required before treatment could start.
Then a canula was fitted. Or is it installed? I’m not sure what the correct term is. I have had varying experiences of getting these inserted…with one doctor it felt like he was putting it in with a golf club. I remember the distinct feeling of the colour draining out of my face as I was swung about the room by my veins. This time, the nurse was an expert and I didn’t feel a thing. A promising start to the week.
Land of Infusion
The drug would be delivered by intravenous infusion. Prior to each of these, I would take a handful of antihistamine and antiviral tablets to help prevent any reactions. One of these, (co-trimoxazole) would be taken only Monday, Wednesday, and Friday, which was a relief because it was the size of a rugby ball.
Over the next five days, I would receive five infusions of Lemtrada. One per day and each would take five to six hours to complete. For the first three days I would receive an intravenous steroid infusion before the Lemtrada to help ward off potential infusion reactions. This would take about an hour. Bookending these were saline drips to clean the line and ensure all the medication was delivered. Call that another half hour for each of those so in total it would be about seven or eight hours attached to a drip each day.
Given this, you’re not really going anywhere for the week, so I made sure to have some books, podcasts and music to pass the time. I listen to a lot of podcasts, so this was an ideal chance to catch up. Random podcast recommendation – Stuff You Should Know is particularly entertaining. After a week, I knew about a lot more stuff than I did before.
The steroid infusion caused an odd sort of metallic taste in my mouth but otherwise passed uneventfully so it was onto the main event. Lemtrada, or alemtuzumab to give it the scientific name is delivered in a black shrouded package. I assume it must be light sensitive, but it sure does look ominous.
See You in 30 Minutes
During the infusion, you are checked every 30 mins to ensure your temperature and blood pressure are fine. There have been a small number of cases where people have suffered strokes during treatment. I tried to put that scary thought out of my mind and tuned into the podcasts, reassured by the frequency of the monitoring.
Ward 68 at the QEUH is used mainly for such treatments and the nursing staff are moving around constantly so I was asked to press my call button every half hour to get the checks. Funnily enough this helped the time pass as each 30-minute block seemed to pass quite quickly. Fortunately, all was good with each of these checks.
It seems a common reaction during infusion is a rash around the area of the canula. It may have been due to the antihistamine keeping things under control, but I did not have this issue. One effect of the steroids is I couldn’t get to sleep on the first couple of nights. I was still wide awake at 5am, finally dropped off only to be awoken by the ward coming back to life again at 7am. Hey ho. By the third day I must have adapted to the steroids and was able to get some sleep.
The treatment itself passed without any issues. I did feel thirsty much of the time so make sure to have plenty of water with you. It does mean trying to go to the bathroom attached to an intravenous drip. If you think supermarket trolleys have a mind of their own, manoeuvring the stand to the bathroom and back again should come with lessons and a driving test.
It was good to be able to get detached from the machine at the end of each infusion and walk around the ward and stretch. I had some visitors and some phone calls with friends which helped pass the time. Largely it’s a week of watching the world go by as the infusion does its thing.
I was well looked after as always by the staff at the QEUH. Shout outs in particular to Donna, Aileen, Jade, the student nurse team and the catering staff who made sure I was comfortable, still functioning and kept me fed and watered throughout. They do make a consistently good cup of tea.
On my second day another patient came into the ward. I can’t remember his particular condition but he was in a wheelchair and struggling to walk. It turns out he was also a martial artist, particularly Savate and Brazilian Jiu Jitsu. We had plenty of good chats about our martial arts training and how demyelinating medical conditions were a pain and really did get in the way of training. The chap left after three days and would be back in a month for further treatment. I hope it all works out for him.
At the end of the week, I was feeling fine and none the worse for the earlier lack of sleep and the treatment itself. After the final infusion, you wait for a couple of hours before leaving to ensure no delayed reactions. All was good and so I was discharged with a month’s supply of the antivirals and instructions to complete the course. I didn’t necessarily feel any different in terms of my MS symptoms but was ready to wait and see.
With Lemtrada Round 1 complete, I would be back to the QEUH in mid-March to start the monthly blood and urine checks and I’ll talk about the first year in the next post.