Liver disease was menopause
gets mistaken for middle age, the menopause or depression,” says Professor James Neuberger, a professor of hepatology at Queen Elizabeth Hospital, Birmingham.
“Fatigue has many different causes so it can be confusing for doctors, but if a middle-aged woman is fatigued and her liver function tests are abnormal then they need to be thinking about PBC.”
The disease can be diagnosed with a blood test that looks for certain antibodies (called anti-mitochondrial antibodies) that are a sign that PBC is present.
“Some people don’t get diagnosed until the liver is so damaged they have jaundice,” says Professor Neuberger.
“Often they will be accused by doctors or friends of alcohol or drug abuse.
“But this disease is completely unrelated to either of those things.”
PBC is a progressive illness that gets worse over decades.
The main treatment is ursodeoxycholic acid – a tablet that makes the bile left in the liver less toxic and damaging.
“It’s not a cure but it can significantly slow the progression of the disease,” adds Professor Neuberger. However the drug does not work for everyone and ultimately some may have such severe liver damage that they need a transplant. “Those most at risk of needing a transplant are the ones who are diagnosed before the age of 50,” says Professor Neuberger.
Mhari admits her diagnosis terrified her.
“I thought I was going to die and never get to see my children grow up,” she says.
Coming across a charity for those with PBC and talking to others with the disease made her feel better.
She started on ursodeoxycholic acid tablets but liver function tests have revealed they are not working and her liver is still being damaged.
“It’s funny because people say to me, ‘You look so well’. But I still get very tired and also the itching can drive me crazy,” Mhari says.
However anti-nausea medication has helped with her appetite and her weight has returned to a healthy 9st.
She says: “It’s possible I might need a liver transplant in the future but for now I have a reasonable quality of life and I’m very happy.
“I try not to think about what might lie ahead.”
For more information on primary biliary cholangitis visit the foundation’s website pbcfoundation.org.uk