In a new blog, a person with MS chronicles her journey taking part in a clinical trial. This is part one in which Hellie spots a request for people to participate in a clinical trial.
I was sitting at work, going through our social media posts, when I suddenly saw a headline: 'A trial of a possible remyelination drug in MS'. It piqued my interest and I clicked on it.
In short, this is a trial looking at a drug called Bexarotene and if this drug can stimulate cells in the brain to repair damaged myelin. It seems that in animal studies this type of drug has done so. This would mean that remyelination, as it is called, would happen and potentially reverse or alleviate MS symptoms. If this works it would be huge!
The trial wants to establish whether the drug causes side effects for people with MS who are already on disease modifying drugs, as well as seeing IF the drug actually can promote remyelination.
When I have looked at clinical trials in the past, I have never met the criteria. But this time it seemed like I would be the perfect candidate for it. The trial is held in Cambridge and also Edinburgh. As I go to Cambridge for my normal MS services, it is not a long journey for me to make.
So I read it, and re-read it, then I closed the blog down. Got on with work, then in my lunchbreak I re-read it again. I told my workmate about it and asked her, 'Do you think I should email my MS nurse to see what she thinks?' My workmate nodded approvingly. Almost immediately came a reply from my nurse saying, “I think you should be a good candidate, should I put your name forward and you can have a chat with them?”. It was all going rather fast, but no time like the present I thought and said yes. Then suddenly my phone rang and one of the doctors involved in the trail asked “If this was a good time”. We spoke and he told me about the trial and I told him about myself. That I was diagnosed in 2007 and I had been on disease modifying drugs for just over a year and was doing OK on them. That my biggest MS-related problems are fatigue and cognitive issues. That I live a quite active life and try to eat healthily. All good stuff he thought, and asked if he could send some more info through.
Thirteen pages of info landed in my inbox and I started reading. When I got to side effects I got scared. They list an awful amount of side effects and then this;
The majority of side effects resolve without consequence when the dose is reduced or stopped, and occur most frequently with higher doses than those we are using in this trial. However, two patients (out of 810) have died directly as a result of bexarotene side effects (one due to pancreatitis; one due to a bleed in the brain).
Riiiiiiight, death, that’s a rather serious 'side effect'. I put the papers down and thought, hmmm maybe not for me.
However, I was still curious, and as I work for the MS Trust I do have the added benefit of sitting next door to our information team. I decided that I would perhaps use our Enquiry Service myself and fired off an email asking about the trial and what we knew. My mind was put at ease a little bit, as I was told that all possible side effects have to be recorded at these trials and that didn’t by any means mean it would happen to all. The 'death thing' still worried me so when I got back to the doctor the following day I asked about this. I was told that the two deaths were not in any MS patients and these patients had not been monitored closely like I would be if I took part in this trial. So that felt like a relief. I decided that the next step was to show my husband the papers and see what he thought.
I didn’t mention any of my worries as I thought that would make him look at the trial in a different light, so I just gave him the paperwork and said, 'What do you think of this, should I take part?'
My other half is a rather sensible fellow, and I really trust his judgement (unless it means having a pizza takeaway every time we can’t be bothered to cook!). He thought the trial sounded really good and quite exciting, if it would work.
I fired off an email saying "Ok let’s go for it" and I got invited for a chat with Professor Coles himself.
During this chat I quizzed him again about the 'death thing', and he assured me it was very unlikely as I would be monitored and have my blood checked regularly for any abnormalities. When I asked him what people were mostly suffering from in the trial so far, I was quite surprised to find it wasn’t vomiting or headaches, which had been listed, but people finding the tablets hard to swallow (they are absolutely humongous), the inconvenience of having to travel to the hospital a lot, and the other symptoms tended to be things that you didn’t notice per se but showed up in test results, such as blood fat levels going up, so you had to take a counter active medication for it. He also reassured me that I could pull out of the trial at any time.
We spoke a bit about why I wanted to do this. I said that I have always wanted to do my bit for science, and that we can never get anywhere unless trials happen and people volunteer to do them. Prof Coles said that it was a good way of approaching the trial like that, rather than it will 'cure me' or anything along those lines. It was funny, because I don’t think I ever thought that. I figured it is so early on in research that taking the meds (if I get them and not the placebo) would not make me feel better anyway. Especially after reading all the side effects!
I decided then and there that I wanted to go on the trial, but I was told I had to wait 24 hours before I made up my mind, this was probably good as I hadn’t spoken to work about what I wanted to do yet, and I really wanted them to be ok with me going to the appointments.
I came back to the office, sat down with my manager and said that I really wanted to do this, and would they be OK with me taking part. They were, so the next step was to go up to the hospital and go through the final checks to make sure I was eligible for the trial.
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