Well this blog has had a bit of a extended holiday, but I always meant to come back to finish it, and with the results of the Bexarotene trial now out in the public, I thought a final visit to the adventures in clinical trial land was in order. The trial came to an end a long time ago now, but it took a while to get the results out. My guess is it wasn’t helped by Covid creating havoc in all hospitals all over the country either.
But at a Virtual MS conference in September the results were in. “A study of the cancer drug bexarotene in Cambridge and Edinburgh showed that it led to the regrowth of myelin in people with relapsing remitting MS. However, the dose needed to produce this effect also led to serious side effects including thyroid disease and potentially damaging levels of blood fats.” This means that although the trial worked, the drug is too toxic to use on people with MS.
Us lab rats got a private presentation by the Cambridge research team on Zoom a few days after the conference, where we sat through some interesting slides from the trial. It seemed that all people who were on the drug (not placebo) had to take counteractive medications due to the harsh side effects. This alerted me that I must have been on placebo as I didn’t have to take anything extra. I did however have to pull out of the trial because I ended up having some crazy liver values after a onset of truly horrible stomach cramps. This turned out to be gallbladder problems, you can read out it in a previous blog. The gallbladder is out now by the way, and I have had no such problems since.
I guess the results are positive even though the drug can’t be used, now chemists can look at finding a similar functioning drug without such harsh side effects. So even if it sadly is a no for bexarotene there is still hope for remyelination one day in the future.
Another interesting side note from the trial was that everybody recruited to the trial were on the same DMD. In the time from the first MRI scan at the start of the trial to the last one, very few people had had any new lesions, which shows that the DMT does a pretty good job of stopping relapses.
So to wrap up my experiences of being a part of a clinical trial, now when it is all done, over all it was a good experience. I guess when I think back to it, the pain and worry I had with the gallbladder issues darkens the experience, but that did actually have nothing at all to do with the trial in the end. That aside; here are my thoughts.
The negatives
The biggest issue was actually the size of those pills that you had to swallow. It may sound silly, and I thought so when I was told people found this an issue. But they really were huge, and you had to take 7 of them! There was a lot of waiting around at the hospital and a lot of trips there.
The actual visits to the clinic were not that bad actually, it was the waiting to have your pills from the chemist that could sometimes take two hours. You do have to commit to it and go to all the appointments, my work was flexible and I spent a lot of time working in the café at the hospital, but this might not be possible for all.
I am sure other people would list all the side effects here, but as I wasn’t on the drug, I can’t add that to my list.
The positives
It felt really exciting to be part of a clinical trial, to see research in action. We were very well looked after by the Research team, I felt I always knew what was going on, and that their operation ran smoothly. The different health professionals involved were all very nice and took their time answering any questions I had. As you saw them so often they almost started to feel like someone you worked with!
On a selfish note it feels really good to have contributed to research. Specially knowing now that I was on placebo. I was a useful number for the trial even though personally it didn’t do anything for me physically as I was not on the drug. The information given throughout was great, I don’t know if all clinical trials run like this, but having the presentation and all the outcomes specially given to us the participants of the trial felt very good. My guess is this might not always happen.
So in conclusion, would I recommend taking part in a clinical trial? I would say yes, if you have the time and energy to give and don’t think it will be a quick fix to “cure” you. It is purely for science and for the better (hopefully) of the larger MS community.
