Detecting advanced disease
Your doctor will be monitoring your condition for life once you are diagnosed with PBC. To check whether your disease is becoming more advanced, your doctor will take into account your
- blood results
- liver stiffness tests
- any scans you’ve had
- overall health
Generally (but not always) having advanced PBC means you have cirrhosis of the liver.
Cirrhosis and PBC
Many liver conditions can result in cirrhosis. It’s not a disease in itself. Cirrhosis means that a significant proportion of the liver has been damaged and overtaken by fibrous scar tissue instead of healthy liver tissue. This makes it difficult for the liver to manage all the chemical processes it normally carries out. Even so, in many people with cirrhosis the liver works well despite these changes.
People often think of alcohol when they hear ‘cirrhosis’ – this is not the case with PBC. In PBC, cirrhosis is caused by damage to the bile ducts over many years. Your doctor may call this stage 4 PBC.
It’s very difficult for doctors to put a time frame on how long cirrhosis takes to develop. As PBC may not have symptoms in the earlier stages, they don’t necessarily know how long someone has had it when they are diagnosed. In one patient study, the commonest time lag from early stage disease to developing cirrhosis was 25 years. In the same study, around 1 in 6 people (17%) diagnosed with early stage PBC had advanced disease 10 years later.
Because cirrhosis is so common in many liver diseases, we have lots of information about it and how it’s treated. Find out more about cirrhosis.
Ursodeoxycholic Acid worked really well for around ten years – although there was cirrhosis there was no deterioration.
Liver transplant and PBC
Cirrhosis can cause a number of other serious health problems. For some patients the best way to deal with these may be to have a liver transplant. This means your damaged liver is removed during surgery and replaced with a healthy, donor liver. Around 1 in 10 liver transplants in the UK are carried out for PBC.
This is obviously major treatment and a big step to take. Your doctor may suggest it if your liver damage is so severe as to be life-threatening. But with PBC, some people have such severe itching that it really impacts their quality of life. In this situation, your doctor may also suggest a transplant.
Your doctor will talk all this through with you and you’ll have plenty of opportunities to ask questions before deciding whether to go ahead. You’ll need to have other tests. And your doctor will have to consider your overall health and how well you’ll be able to recover from major surgery. If you think this type of treatment may be suitable for you, do ask your specialist about it.
Liver transplant is usually very successful these days. Although it’s possible for PBC to come back in your transplanted liver, it tends to be very slow to develop and unlikely to become advanced.
As liver transplant is carried out for a number of liver conditions, there is a dedicated section on our website all about liver transplant.
Checking for complications of advanced liver disease
Cirrhosis can be called ‘compensated’ or ‘decompensated’. If it’s compensated, your liver is still healthy enough to manage all of its important functions. If it’s decompensated, it is too damaged to work well and this can cause a number of medical problems.
If you have decompensated cirrhosis, your doctor may suggest that you have regular tests to pick up any complications as early as possible, when they are easier to manage. There is a list of likely tests in the page on monitoring PBC.
Swollen blood vessels
With cirrhosis, fibrous tissue in the liver can make it difficult for blood to flow through. This causes high blood pressure in some veins that drain into the liver. Veins in the food pipe in the throat (the oesophagus) or in the stomach can become swollen and prone to bleeding. Your doctor may call these varices (pronounced varr-ih-sees).
You may have endoscopies to make sure you aren’t developing this complication. Read more about treating oesophageal varices.
Risk of bleeding
Cirrhosis can cause a low level of blood cells called platelets, which help your blood to clot. Your doctor will monitor this with blood tests. If you have low platelets, you may need treatment to increase platelet levels before any surgery or dental work. Your doctor will tell you if this is the case.
Liver cancer
If you develop cirrhosis, you are more at risk of developing a type of liver cancer called hepatocellular carcinoma (HCC). Your doctor may suggest you have an abdominal ultrasound every 6 months to check for this. They may also do regular blood tests. They may call these checks ‘surveillance’. HCC that is diagnosed early can be cured. So it’s important to have these tests if you’re at risk.
Read our information about surveillance checks for HCC. There is also lots of information about hepatocellular cancer and its treatment on our Liver Cancer UK site.
Managing other symptoms of advanced liver disease
Because the liver is the chemical factory of the body, you may develop a number of problems if your liver is failing. There is brief information about these below. Visit our cirrhosis information for more detailed information.
Ascites (pronounced ‘ass-eye-tees’) is a medical term for fluid collecting in the abdomen. You may also have swollen feet and ankles. These are common problems with advanced liver disease. Your doctor may treat this with tablets, reducing salt intake and advice about diet. If the fluid is making you very uncomfortable, you may have it drained into a bag through a needle and tubing.
Hepatic encephalopathy means that toxins are building up and affecting your mental function. These would normally be removed from the body by the liver. This can show up as confusion, sleep disturbance and slurred speech. This is more likely to happen when something else has gone wrong – you have an infection, constipation or are dehydrated for example. Treating these will in turn treat the encephalopathy. It is important to tell your doctor as encephalopathy can be life-threatening if not controlled.
Your general health will be affected by your liver disease. You are more at risk of infections and your doctor may give you antibiotics to prevent this.
People with advanced liver disease often have difficulty eating and are malnourished because their bodies are not absorbing nutrients well. Your doctor or specialist nurse may suggest you see a dietician. You may benefit from diet supplementary drinks, such as Complan, Ensure or Fresubin. People with advanced liver disease will be encouraged to take a carbohydrate rich snack before bed, each night. There is more about diet and liver disease in the page on living with PBC.
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Published: October 2024
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