During the first 3 days of treatment you receive an IV dose of 1000mg of Steroids (methypredisolone) to lower your chances of getting a serious infusion reaction (https://www.lemtrada.com/what-to-expect/during-treatment) before they give you the usual cocktail of Piriton, Lemtrada and Saline flushes. On day 4 and 5 however, you don't receive any steroids, which is probably why no one is well enough to write a blog on those days because we're all asleep! Steroids definitely made me hyper for the first few days but they do also have the downside of preventing you from sleeping through the night which many of my Lem buddies experienced during treatment week.
From what I can remember of Day 4, it mostly went without a hitch. I'd had a fairly good night's sleep despite the evening of Day 3 being rather uncomfortable, (the rash was fairly prolific at this point and I had to be plastered from head to toe in Eurax cream to combat the itching.)
I arrived at the JR bright and early on Day 4 to be greeted by the lovely Sue (partner of my Lemtrada buddy Pete) who told me that Jane the Phlebotomist was on her way, cue instant calm and relief! Sue knew my daily panic was usually when and how I was being stabbed so to be told this straight away was just fab. Pete told me he'd had a bad flare up of the rash the night before and was still pretty intense that morning. I started to say "oh mine's all gone!" and then spotted the familiar little buggers appearing on my arms, bah. Spoke too soon! Sue and I both agreed it was just as well that Eurax sold a super-size tube as well as the normal size as we were both going through it at quite a pace. I have a habit of slapping it on like sun-tan lotion until I'm caked in it, not entirely sure it makes much of a difference but it certainly made me feel better.
So due to our Dalmatian impressions we needed the cannulas in ASAP to get the fast acting IV piriton into our systems. I seem to have suppressed the memory of the cannula experience of Day 4, but I'm fairly sure it went into the left arm for the 3rd time without much of a problem, courtesy of Jane who we repaid with cake for her services to stabbing us. After Pete and I were all needle-d up it was straight onto the IV Piriton to keep the rash at bay, a few flushes and then onto the Lemtrada.
The most noteworthy thing for Day 4 was probably the fact that we had a change of scene due to our room being needed by the group of people known as the "Tysabri Team". This is another infusion treatment for MS and one that I was actually offered at the same time as Lemtrada. Tysabri is administered once a month as a 2 hour infusion at the JR with I think 2 hours of monitoring afterwards (don't quote me on that one, see the MS Society website for more info). Interestingly one of our MS nurses mentioned that he thought Tysabri was considered to be the most effective MS drug, both Sue and I thought that it was Lemtrada at the top but there we go. Tysabri is a great drug nonetheless but seems to have far more of an impact on your working life than Lemtrada in my opinion, I certainly wouldn't want to be trotting up to the hospital once a month for the rest of my life! Very happy to have had the choice between the two though.
So the rest of Day 4 was pretty mundane, I slept on and off for quite a lot of the day and so did Pete. My Parents came to visit for the afternoon which was nice for them to meet everyone. And although the journey home was seriously lengthy (leaving at 4:30pm and travelling down the A40, it was bound to be terrible!) my lovely friend Glyn let me tip my seat back and snooze, which was just the ticket. I felt incredibly heavy limbed when we got home and got a bit teary about having to go through another long day of treatment the following day.
Day 5
I woke up feeling much the same as the night before and could barely lift my head from the pillow. Even getting myself to sit up to drink water felt like a marathon, cue more tears as I told Jonny that I couldn't do it, there was nothing left in me to give. However I somehow found enough energy to put myself in my hospital clothes (joggers, t-shirt and super loose cardi), scraped my hair back and dragged myself down to the sofa to glug down all my various tablets.
Speaking of which, I would highly recommend either investing in a granny-style weekly tablet dispenser with labelled compartments for each day or writing a really clear list. By the time you have to take Omprezole daily, Anti-virals twice a day, anti-biotics twice a day on Mon/Wed/Fri and enough supplements to single-handedly keep Holland and Barratt afloat - it gets hard to keep track of what to knock back when!!
So Glyn arrived to take me to hospital for the "last time" (I wasn't counting on this being the last just in case something went wrong) and I was lucky enough to be able to sleep on the way to the hospital which was lovely. Glyn is such a lovely person and a fantastic driver (with a great car - Toyota Auris Tourer Hybrid, you know how I love a Toyota!) so I really have appreciated the lifts and the chats this week.
For Day 5 we were back in our usual space, room 23. Pete bless him was plastered all over with the rash again, mine was much less angry so I really did feel for him, he was coping well with it though - super strong fella!
Sadly Jane the Phlebotomist was not on duty so we had a nice Doctor instead who managed to put the cannula in my pesky right arm super quick with little pain. Hooray! It flushed fine, (which indicates it is working) so all was well, right? NO of course not! Because my right arm is basically utterly useless and the veins are vindictive little wotsits. Chris attempted to put some Piriton through the cannula and I knew instantly from the sharp pain that it wasn't going in so out came the Cannula and back came the Doctor. Thankfully because I'd been fidgeting and fussing around for a while, I'd managed to plump up the veins in my hand and that is where Cannula #8 of the week ended up. Which freaked me out something chronic but actually it was way more convenient than having it in the crease of my arm.
So business continued as usual until I suddenly felt a bit sick. Well a lot sick actually, Sue kindly ran off to find me a cardboard bowl and I must've looked quite green because Pete the nurse decided I needed an anti-sickness drug and went off to fetch some stuff called Cyclizine. He warned me that it can hurt as it's pumped in, and it didn't particularly hurt, but did feel quite spiky which was a little unpleasant. My sickness feeling disappeared almost instantly, and then so did my sanity...
What ensued I'm not sure I can even put into words as I genuinely can't remember half of it, but it was like an out of body experience. I don't remember what order things happened in, but I basically went loopy for about 20 minutes. And yes to those of you thinking, "well she's loopy anyway" - EVEN MORE LOOPY THAN NORMAL! My first symptom I think was an overwhelming headache that made me cry out in pain and panic, it came in waves and seemed to be this enormously tight band that moved positions constantly. I couldn't decide it I wanted to sit up, lie down or put my head on one side. Then I felt like my eyes were too big for my head and were open really wide and I definitely remember asking Pete if they were. I saw myself running around the room and crawling along the walls, that was entertaining! I was laughing hysterically, I think at myself? I wanted to burst out in song when I came out of the loo (specifically the gay anthem "I am what I am" and "Shiny" from Moana) and I suspect I possibly sang something at some point. I think I also got very excited about the Ibruprofen Pete offered me (to calm me down perhaps?) because they were bright pink. I also repeatedly asked if I was high and said I felt amazing - despite this, I will NOT be requesting Cyclizine EVER AGAIN! How on earth anyone managed to keep a straight face I don't know - Sorry Sue and Pete!
I'm just glad I didn't try to escape or generally cause chaos, because I certainly wasn't in control! Very odd thing to experience that's for sure. It seems to be quite a rare side effect but not uncommon.
So after that fun little episode I unsurprisingly felt totally wiped and promptly enjoyed a very good snooze, (after copious amounts of chocolate which practically had to be fed to me by Sue as I was feeling pretty shaky, what a diva I am!) in fact I was so tired in the afternoon that when lunch arrived I was distinctly uninterested and had to give up eating it halfway through. I was enjoying my bread roll one minute and then practically face down in my pasta carbonara the next. Sleep was most definitely the first priority on day 5!
With my drug induced high adding an hour onto the day's proceedings it was no surprise that Pete finished first for the day by about an hour. Saying goodbye to him and Sue was actually really hard and ridiculously emotional. Having spent 5 very long, very intense days together I felt like they were family by the end of the week and I'm pleased to say that we're still in touch now, having a support network is SO crucial to fighting MS and I really hope we get to go through Round 2 together again. We'll also hopefully be with another MS warrior called Izzy next year, whom I was due to share my treatment week with too but didn't in the end as she had hers brought forward. I think the three of us together would be quite entertaining so here's hoping we can get the timing to work.
I finished my treatment just in time for my friend Sid to arrive to pick me up and I must admit I didn't really feel anything as the last cannula was removed. (Well pain obviously but not elation surprisingly). If anything I felt slightly sad not to be coming back in for more treatment the week after, how bizarre is that?I think in reality it all comes down to the people, I feel the same about my nurses Pete and Chris as I did about Sue and Pete. The best news I had all week was that Chris is now my designated MS nurse rather than Ana the clinical research MS nurse as Ana is undertaking her clinics in Banbury more often than in Oxford. I love the idea of seeing someone twice a year who has seen me at my lowest, held my hand whilst I sobbed, massaged my back when I couldn't breathe and made me cake on my birthday - I will most definitely look forward to my appointments with her, she is a very special lady indeed.
It's 2 days post treatment now and I have honestly spent nearly the whole weekend asleep. I'll do a "post-lemtrada" blog post next as the weekend has been fairly rife with symptoms and the recovery period is certainly in full swing.
For now, it's over and out, thank you again for all the messages of love and support. I really appreciate them and feel so very loved.
C x
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