I really want to stay on the trial, on the other hand I am rather fond of my liver and I prefer not to make any permanent damage to it.
In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 9, where Hellie gets to see her "impressive" yet alarming liver values.
I have some news, some rather annoying news. I am off the clinical trial, well temporarily anyway. Hopefully. If you read or watched last week's blog/vlog you'll know that Addenbrookes contacted me to tell me my liver values were not great. This was following a visit to the AE after severe stomach pains, which resulted in a diagnosis of gallstones. Prof Coles told me on the phone that they couldn't be sure if it was the drugs, or the gallstones that caused this. I later had an email from Dr Nick asking me to arrange another blood test to see if my "impressive" liver values had gone down after coming of the drug. Impressive how I wondered? Like when I tell my 4 year old he has impressive skills in mess making?!
Today at Addenbrookes I understood what he meant. Prof Coles showed me my so called ALT values ( don't ask me what these are exactly, but it is a liver function they measure, where a normal value is between 7-54 or so I believe). The first few weeks it had been between 15-20 last week it was 700+! So yes, rather impressive. The blood test I had on Friday showed it was down to 278, so down, but still high.
It was decided that I will stay off the drug until they have got today's results and then if it is normal, I could start taking the drug again, if I want to. Which I absolutely want to, it feels stupid to stop now.
But there are some issues, I will have to go back to weekly monitoring as I was meant to move on to monthly, as we will pretty much start again. The other problem is that we won't know if the jump was caused by the gallstone or potentially being on the drug. And if I come go back on the drug and the values go up again, it could still be caused by the stone.
I asked if I go back and the values go up, if there is a counteracting drug I could take, but there isn't, so then I would have to stop again. I think they haven't had this problem in the trial so far, and I feel oddly guilty for messing their numbers up as it could all be totally unrelated to the trial itself. It would suck if liver damage ended up as a trial side effect because of it.
I really want to stay on the trial, on the other hand I am rather fond of my liver and I prefer not to make any permanent damage to it. So I guess we just have to wait and see! Trust me to be a troublemaker.
I will be back next week and give you an update on what is happening!
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- 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.