The most exciting thing was that a chap came up in the lift and said he read my blog – good to know that I have at least one reader!
In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 7, where Hellie debates whether she's on the drug or placebo.
Back once again at Cambridge, I am starting to feel like a seasoned professional the way I navigate through the corridors, chatting to pharmacy staff...yeah it's like a second home. Well, if your home was very large with a confusing layout and filled with coughing strangers. Right, unfocused again! Clinical trial it was. So week four on the drugs is about to start. Have I noticed any side effects yet? Not really, I have had headaches and fatigue but I think that can be down to the hot weather. I did have an eye infection last week and Dr Nick, who I saw today, did tell me that he had looked it up after chatting to me and said it can be a rare side effect of Bexarotene. But who knows. Personally I think I am on placebo. Only because I don't feel any different, and I was expecting to feel ill on this medication. Except, I have now spoken to three people on the trial who ended up having to take medication for their thyroid during the trial, so being a bit of a telltale sign you are on the drug not placebo. Well, unless you were very unlucky and ended up with thyroid problems anyway! But all of these three people have been feeling fine the whole time, with no side effects apart from what showed up in the tests. So there you go, you wouldn't necessarily feel bad at all it seems.
My test results are not showing anything too exciting – the thyroid is being a good organ, my cholesterol is a bit high, but I was borderline to start with. I guess it is something to keep an eye on. Might end up on statins if that is the case.
So not much to report this time really! The most exciting thing was that a chap came up in the lift and said he read my blog – good to know that I have at least one reader! He was very nice and we walked through the long corridors on the way to the pharmacy talking about the trial and why we wanted to do it. He said that he had similar reasons as mine, wanting to do his bit for science and help others.
I said to him that it would have helped when you are in the early stages of thinking about signing up for the trial, to have met people like him, to know that you don't keel over with side effects, and even if your thyroid levels change and you have to take meds for it, you are still ok. When you read the scary document that has the "two people have died due to side effects of the drug" you go a bit blind. So to know that people that have been on the trial are actually totally fine would have calmed those nerves a bit.
If any of you other people on the trial read this, I hope you are all doing ok and if you want to do a guest blog telling us your story about the trial, do get in touch!
Until next week!
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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.
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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.