In 2008, Lorna was diagnosed with primary biliary cholangitis (PBC), a chronic autoimmune liver condition, following a routine blood test.
Lorna, 72, from Slough, said: “Although I didn’t have any symptoms, I’ve since discovered that the disease can lead to overwhelming exhaustion that sleep cannot fix and a relentless skin itch caused by toxins leaking into the blood. It was scary that if left untreated, it could have led to liver failure.”
It is often called a silent condition because the immune system slowly damages the liver’s tiny bile ducts long before a patient feels ill. When bile cannot flow out of the liver normally, it accumulates and acts as a toxin, causing inflammation that eventually leads to irreversible scarring.
Lorna was prescribed the standard medication, ursodeoxycholic acid. But she said: “The initial medication didn't change anything, and my blood levels were showing that it was not getting any better; it was getting worse. I was so worried as I was hopeful the standard medication would be enough.”
Taking part in research
In 2021, her consultant suggested she take part in a clinical trial. The trial was evaluating a new medication designed to reduce liver inflammation and bile acid build-up.
Lorna, a grandmother-of-three, said: “I was dubious because I don't take drugs easily but the blood levels were just getting higher and higher, so I thought, ‘I’ve got to do something’.
“There was the unknown of what would have happened to my liver if I hadn't gone on it. I was thinking it’s going to give up altogether.”
She therefore decided to take part in the 6 year long trial.
For Lorna, taking part involves taking a single tablet daily at home. She also attends hospital every 6 months, so the research team can monitor and take blood tests. She also has regular liver scans.
“In the first year of the trial my blood tests showed that my liver markers were improving and the peace of mind I felt was immense."
- Lorna
She said: "It has continued to improve to now being told I have a healthy liver. It was definitely the right decision to take part. I’ve not looked back since.
”I am full of admiration for the staff. The doctor and wonderful nurse who takes my blood every 6 months now are so lovely and kind; they watch over me. I am so looked after; it has been absolutely life-changing.
“Now, I'm sort of a different person; when I first found out I had PBC I was so worried about my liver failing, but now that worry has been taken away.
“I would recommend people to give these trials a go wholeheartedly. For me, it's been absolutely wonderful and quite honestly one of the best decisions I have made.”
How you can get involved with research
Sign up to Be Part of Research to be contacted about a range of health and care research. Or check out our full list of studies to see if one is right for you.
And if taking part in a study doesn’t feel right at the moment there are other ways to get involved in research.
