A Man Living with PBC

Back in 2004 my general practitioner was reviewing my recent blood work and noted that my levels of alkaline phosphatase (ALP) were far beyond the normal range. He indicated it was concerning and referred me to a gastroenterologist.

An examination and more blood work showed abnormal liver functions, including high ALP, as well a positive antimitochondrial antibody test (AMA). He shocked me with the diagnosis: “I believe you have primary biliary cirrhosis (PBC).”

Receiving a life-changing diagnosis

Cirrhosis! My first thought was, "oh my goodness, had years of heavy drinking caught up with me?" He explained that my PBC was probably not related to alcohol usage. It is an autoimmune disease where antibodies attack the good cells in bile ducts, which can lead to liver damage and cirrhosis.

He said it would be best to stop drinking alcohol completely to mitigate stress on my liver. He went on to explain that PBC is a chronic liver disease with no cure. I was devastated.

Why is PBC less common in men than women?

I had never heard of PBC before and needed more information. I began doing research on WebMD, the Mayo Clinic, and the American Liver Foundation websites. The information raised many concerns. To my surprise, I discovered that around 90 percent of patients diagnosed with PBC were female. I am male and therefore an outlier.

Fast-forward 22 years: I am now 73 years old, have been living with PBC for over 20 years, and I am basically asymptomatic. I feel extremely fortunate. It is now called primary biliary cholangitis, which seems to lessen the negative reactions when speaking about the disease.

The differential between the percentage of men with PBC compared to women still puzzles me. It appears that women are much more prone to autoimmune diseases than men. Genetic and hormonal differences may contribute to the difference.³

Do men experience worse outcomes with PBC?

Research has suggested that men experience worse outcomes with PBC compared to women. Part of this is because men may show fewer symptoms, leading to delayed diagnoses and men getting diagnosed at later stages of PBC. A study published in 2026 also showed men with PBC had a higher risk of liver complications and death, which causes me great concern.¹ Being asymptomatic, I feel like I’m waiting for the other shoe to drop.

Are more men being diagnosed with PBC?

Unfortunately, the latest statistics demonstrate that more men are being diagnosed with PBC.² This may be due to expanded awareness of the disease and that it is no longer just considered a woman’s disease. I am a member of several blogs and online communities dedicated to PBC. But to date I see very few men participating in chats and discussions.

It has proven difficult to find other men with PBC. Luckily, I attended a webinar entitled “Staying on Top of PBC: Monitoring Symptoms and Lab results” presented by Real PBCtalk. To my surprise, a fellow from Ohio was the featured PBC patient. Sadly, he reported that he had extensive symptoms including massive fatigue. He said he could hardly get out of bed in the morning or even take a shower. He did say that he experienced little, if any, itching.

The importance of early detection

My plea to men is to be proactive. Early detection and treatment are paramount in slowing the progression of PBC. Go to your doctor, get blood work done, and understand what the numbers mean. A healthy lifestyle including exercise, diet, and limited alcohol use may also potentially help, but talk to your doctor.

There is no question that there is limited knowledge about PBC in the general population, and even less in men. Much more funding and research must be done, so we can better understand this disease and help all patients.