My name is Kate, I work as an editor and live in Edinburgh with my partner, Steve, and two cats. I’m currently taking part in a clinical trial for bexarotene, a drug which may promote remyelination in people with MS. I was diagnosed with MS in 2016 and I’ve been taking Tecfidera for just over a year.
I attend the Anne Rowling Clinic in Edinburgh and had read about the bexarotene trial on their website. My neurologist said she thought I might be a good candidate, and after speaking to the senior research nurse on the trial and reading through all the information I decided to sign up. I couldn’t think of a good reason not to, really. I’m self-employed and only live a short journey from the clinic, so attending appointments wasn’t going to cause too much disruption. Though the prospect of side effects was a bit scary, I was satisfied that I’d be closely monitored and looked after.
My main reservation was that I don’t tend to “worry” about my MS too much, but it does prey on my mind a bit when I have an upcoming appointment or MRI scan. Part of me wanted to just get on with my life without having to think about more hospital appointments and extra medications, but in the end, I decided it was more important to me to contribute to the research, and I thought taking part might also help me “confront” my MS (rather than trying to ignore it!)
My experience of the trial has been very similar to what Hellie details in her blog posts. As part of my initial screening, I had an MRI brain scan in a state of the art MRI machine. As the scanner used for the trial is lot more high-tech than my usual one, it produces higher quality images, so I guess this is one benefit of taking part. There was even mention of people being able to watch Blue Planet while in the machine! I had no such luck, but that was fine as I prefer to shut my eyes and pretend to be somewhere else. After my MRI, I met with the trial consultant who briefly showed me some of the images from the scan.
Once the results of all my tests came back it was time to start the meds. Ah yes, the gigantic meds. Before starting, the team had mentioned how swallowing the pills (my dosage came to six big ones) was sometimes the biggest problem people faced in the trial. I have to admit I was quite blasé about this until I took the first couple, at which point I panicked and almost dialled the clinic crying “I can’t do this!” You do get used to them though. After doing a bit of googling on ‘how to take massive pills’ I found that leaning forward when swallowing helps a lot and stops them feeling like they’re getting stuck. I was a bit apprehensive after taking the first dose (my boyfriend was looking at me as if I was about to transform into some sort of magical creature in a strange version of Alice in Wonderland – or Kate in Clinical Trial Land), but I felt fine.
I’ve been on the trial for around two and a half months and now attend the clinic monthly for monitoring (including a blood test) and to pick up more meds. As you need to fast before each blood test, they also offer some food when you come in, which is really nice of them. I feel quite guilty sitting there as someone who probably has a hundred more important things to do brings me a cup of tea and a pastry, but it’s definitely appreciated! The team also have the next batch of meds ready for me to take away. I’m usually in and out within around 30 minutes. The whole research team are absolutely lovely. They take a genuine interest in you, are happy to answer any questions, and are very appreciative of you for taking time out of your life to take part in the trial.
So far, I haven’t noticed any side effects and nothing disturbing has been showing up in my blood results, so all in all it’s been quite straightforward. I think it’s quite likely I’m on the placebo, though of course I can’t be sure. I don’t think I’ll be disappointed if I am. In any case, it’s been an interesting experience. I intend to continue with the trial and I’ll be interested to see what the outcomes are once the results are out.
MS in the Media
17 May 2019
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- EastEnders MS storyline
My Vespa adventure for the MS Trust
13 May 2019
For his next fundraising adventure, our supporter Nick Jolly will be riding 2,500 miles to Hungary on his Vespa scooter. He tells us about the inspiration behind his challenge.
"When you lose something, it makes you appreciate what you have"
13 May 2019
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.