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How does primary cholangitis quietly affect your quality of life? Explore the underlying causes of the symptoms!
Primary cholangitis (PBC), formerly known as primary biliary cirrhosis, is an autoimmune liver disease. It is characterized by the slow and progressive destruction of the small bile ducts in the liver, resulting in the accumulation of bile and other toxins in the liver, forming cholestasis. As the disease progresses, liver tissue will also be damaged, which may eventually lead to liver fibrosis and cirrhosis. Common symptoms of PBC include fatigue, itchy skin, and more severe jaundice. Most patients may only have blood test changes in the early stages.
"Even early symptoms have a great impact on the quality of life of many patients."
PBC is a relatively rare disease, affecting approximately one in every 3,000 to 4,000 people. The disease is more common in females, with a sex ratio of at least 9:1. The reason for this difference is unclear, but it may be related to the expression of sex hormones such as estrogen, which influence the response of the immune system.
Symptoms and Impacts
According to research, about 80% of PBC patients experience fatigue. This is a non-specific symptom, but has a huge impact on quality of life. The cause of fatigue remains unclear, and specific diagnosis and treatment are relatively difficult.
“For patients with PBC, the impact of fatigue is not limited to physical aspects but may also include psychological challenges such as anxiety and depression.”
In addition to fatigue, itchy skin (also known as pruritus) is also a common symptom of PBC, experienced by approximately 20% to 70% of patients. The itching sensation often occurs on the hands and feet of the body, but patients may also feel itching on the scalp, face, back, and other areas. The itching sensation is usually moderate in intensity and may worsen at night, further disrupting sleep.
Diagnostic Methods
The diagnosis of PBC is usually made when patients are asymptomatic, as they may be referred to a hepatologist because of abnormal liver function tests. Blood tests often show elevated liver enzymes, particularly gamma-glutamyl transpeptidase (GGT) or alkaline phosphatase (ALP). Antimitochondrial antibodies (AMA) are a characteristic serum marker of PBC and are detectable in 90% to 95% of patients.
"Many PBC patients do not feel anything abnormal at the beginning of the disease, which makes timely diagnosis more difficult."
When patients do not have antimitochondrial antibodies in their blood and symptoms persist, a liver biopsy may be needed to confirm the diagnosis. In addition, abdominal ultrasound or magnetic resonance cholangiopancreatography (MRCP) can be used to exclude other biliary obstructions.
Standardized disease management
Current treatments for PBC are aimed at improving symptoms and slowing disease progression. Initial treatment is with ursodeoxycholic acid (UDCA), a drug that has been used for 20 years. For patients who do not respond adequately to or tolerate UDCA, a recently authorized agent is obeticholic acid (OCA).
"While several treatments are currently available, for some patients their effectiveness remains limited."
In managing itch, a common first-line treatment is an anion exchange resin such as colestitinib. These drugs can relieve itching by binding to bile acids in the intestine. If the condition is complicated, other therapies, such as rifampin or naltrexone, may also be considered.
Impact on quality of life
The various symptoms of PBC not only affect the patient's physical health, but may also affect their mental health and daily life. Many patients report that fatigue and itching directly affect their work and social activities. They may have difficulty interacting with family and friends, or even feel lonely.
In addition to basic physical treatment, appropriate psychological support and life management are also crucial to the patient's quality of life.
“The impairment of quality of life comes not only from the physical impact of the disease, but also from the emotional and psychological challenges.”
Prognosis and future prospects
With the introduction of ursodeoxycholic acid, the course of PBC has improved significantly. Many studies have shown that the drug is effective in improving liver function, slowing the progression of liver disease and increasing survival rates. In addition, other new therapies are being studied continuously, which may bring further benefits to patients in the future.
With a better understanding of the pathogenesis of PBC, it is hoped that the disease can be identified and treated more effectively, improving the overall quality of life of patients. However, this process still requires time and further scientific exploration.
Every PBC patient's experience may be different. Have you ever wondered how this disease affects your life and the feelings of those around you?
