You may have read my first post on picking my new DMT for the treatment of my MS – if not click here to read.
I have chosen Lemtrada (Alemtuzmab) as my second line therapy. This is given via a 4 hour infusion for 5 days. There are a few other drugs given before too (I will talk more about that later on). I am writing this on the morning of day two; I had a plan to write as I went through the day, but there was quite a bit going on so it just didn’t happen. Day one started early; we dropped the children of with Grandma and headed on to the hospital for an 8:00 am start at the Day Care Centre at the Hospital. I wasn’t really nervous about the treatment beforehand, but even if I had been, I think my nerves would have settled when I walked through the door; the nurses were so friendly.
I picked a comfy La-z-Boy chair in the corner next to the window and as soon as I was comfortable the nurse took all my baseline figures; blood pressure, temperature and heart rate. Next the cannula was put in my hand – that was then given a little flush of saline, which is a little cold. You may have been told to have a few cups of tea or coffee before; a hot drink will help your veins get bigger, ready for the cannula, which makes it much easier for everyone.
During the first hour my MS nurse, Emma came and had a brief chat with me about what the week would be like and she gave us a leaflet which had a video to watch. This didn’t tell us anything we hadn’t already read but it was nice to see anyway.
Once the cannula was in, I was given some tablets; some painkillers and anti-histamines (which are given throughout the week of infusion, and you may be given some to take home too), and some anti-viral tablets, which you will need to take for 30 days. These are standard meds that just help reduce any reactions to the treatment. After this I was given an hour of IV Steroids and another saline flush – the saline helps the drug move around the body.
At about 10 am the Lemtrada infusion started; this takes 4 hours to filter through. I didn’t really feel anything to start with. The nurse said that with the previous (and only) two Lemtrada patients she had cared for, the first 2-3 days are normally ok, with very few side effects. For me, during this first day, I had one little spell where I felt a bit odd; I had cold and flu like feelings, and my legs got really restless and a bit painful (but I was sitting down all day). My temperature and blood pressure were fine so neither I or the nurses were worried, I was also very tired which probably did not help.
During the first 2 hours of the Lemtrada infusion the nurses checked my obs every 15 minutes, and then after two hours, every 30 minutes. This is obviously essential but it does make it quite tricky to get any decent rest. (Note; from the next few days I learned it is REALLY important to nap and doze off as much as I can, despite the noise of the ward and the constant check ups. I took headphones and an eye mask to help [see day 2, 3 and 4] and it made the whole process a lot better).
Once the infusion was done, I had another bag of saline and 2 more hours of observations – this ensures there are no further reactions that are out of the ordinary or that need treating. I finished day one at about 4:40; I was a little tired and my legs were a bit wobbly; more than likely from sitting down all day. When I was home I had some dinner, watched a film and then went to bed at 9:40pm. I took some paracetamol slept through to 6:30 am; ready for another day!
The first day was fairly plain sailing. I would advise you to remember to keep drinking and eating as normal, and napping when you can. My hospital provided hot drinks, and glasses of water and Katherine packed lots of healthy snacks as well as going to the hospital cafe for some lunch.
I would advise having someone with you for the days in hospital if you can; Katherine has been with me most of today, and having someone (especially that I love spending time with) to chat to, get me bits and bobs, and just to have someone you know and trust with you helps so much.
My Mum and Dad came along later in the day and took me home. They had all carefully planed the week between them, with work and childcare commitments, and I am grateful; having them around me makes it so much easier to cope with. Getting cards like this from Jake really helped too 😀
If you’d like to have a chat feel free to drop me a email. I’ll happily share my experience with you or try and answer any questions, I’m not a doctor so anything I write is always just my view and experience of things.
Find all the other Lemtrada posts here.