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Managing advanced liver disease

Over years or decades, chronic hepatitis B or C can cause serious liver disease including advanced fibrosis, cirrhosis or liver cancer (hepatocellular cancer). As scar tissue or tumours replace normal cells, blood flow through the liver can be reduced and liver function declines. When the liver becomes unable to carry out its crucial functions, this is known as decompensated liver disease.

People with advanced liver damage may not be able to process HIV medications or other drugs properly, and they therefore may need dose adjustments or a change in their drug combination. Overall, however, people with HIV who have serious liver disease appear to do better when taking HIV treatment.

Liver damage can lead to a wide range of health problems, including internal bleeding in the stomach and oesophagus, swelling of the abdomen (ascites), poor blood clotting, brain impairment (hepatic encephalopathy) and increased susceptibility to infections. Some of these are due to the build-up of toxins that the liver can no longer filter out of the blood.

Liver cancer in people with hepatitis B or C is commonly diagnosed late and is difficult to treat. Small tumours can sometimes be surgically removed. Other treatments include localised or whole-body chemotherapy, radiation and burning or freezing tumours. These methods can relieve symptoms and sometimes improve survival, but they usually do not cure liver cancer.

Because these treatments work best if liver cancer is caught early, people at risk should be screened regularly. Current guidelines recommend ultrasound scans every six months for anyone with hepatitis B and for people with hepatitis C who have cirrhosis.

Various medications and procedures are used to manage symptoms of advanced liver disease, but mostly these do not improve the long-term health of the liver. Successful treatment of hepatitis B or C can stop liver disease from worsening and the liver may be able to partially heal itself. But advanced liver damage is often permanent, which is why it is important to start treatment before it occurs.

Liver transplants

If your liver becomes so damaged that it cannot repair itself and is likely to fail completely, you may need to consider a liver transplant.

Transplants may be done using donated livers from a person who has died or a piece of liver from a living donor (since liver tissue can regenerate itself). Unfortunately, donated livers are in short supply and most people who need a transplant will have to spend time on a waiting list.

Studies have found that people with well-controlled HIV can do as well after a liver transplant as HIV-negative people, although those with hepatitis C co-infection do somewhat less well.

HCV almost always infects the new liver soon after a transplant. Hepatitis C treatment before or after the transplant can sometimes prevent this, but people with advanced liver disease may not be able to tolerate interferon-based therapy. New direct-acting antivirals appear to be better tolerated and more effective. Sofosbuvir plus ribavirin is approved in the European Union for people with hepatitis C awaiting liver transplants but is not yet recommended in national guidelines.

Organ transplant is a specialty medical skill, and the hospital where you receive HIV care may not be a centre with expertise in this area. This could mean that you will be referred to another hospital.

If you have a successful liver transplant, you will need to take immune-suppressing medication for the rest of your life to stop your body from rejecting the new liver. You will still have to take HIV treatment as well.

Liver allocation is based on a scoring system. Donated livers go first to people who need them most but are not yet so sick that they are unlikely to benefit. Liver disease can progress rapidly in people with HIV, so people with signs of decompensated cirrhosis or liver cancer should be referred to a transplant centre early.

Complementary approaches

Many people with hepatitis use complementary or alternative therapies, either as a treatment for liver disease or to help relieve symptoms or side-effects.

Some people with liver disease use herbal treatments such as milk thistle. It is important to be cautious when considering such products. There is little or no evidence from clinical trials to show that most complementary and alternative therapies work for people with hepatitis B or C. Use of these products can involve risks, including their own side-effects and interactions with other drugs you are taking. Always inform your HIV and hepatitis doctors and pharmacist of any other treatments you are taking, or considering taking, including anything bought over the counter.

There are many forms of complementary therapy that may be able to help with some hepatitis symptoms or side-effects of treatment. These include acupuncture, massage, t’ai chi, yoga and meditation. Many people find that these therapies can be beneficial in reducing physical discomfort or mental stress. Search for practitioners via a reputable agency such as the Complementary Therapists Association (www.complementary.assoc.org.uk). Again, inform your doctor about other approaches you may be using.

People with HIV and hepatitis B or C can benefit from adopting a healthy lifestyle, including having a balanced diet. You shouldn’t need to make specific changes to your diet if your liver function is still good. You may need to reduce the amount of salt and protein in your diet if you have cirrhosis, as processing these can put additional strain on your liver.

Try to maintain a healthy weight. There is some evidence that being overweight raises the risk of fatty deposits in the liver, which could make your condition worse. Being a healthy weight can also help you respond better to treatment.

Since people with HIV and hepatitis may have an increased risk of cardiovascular disease and diabetes, your clinic should monitor your blood fats or lipids (cholesterol and triglycerides) and blood sugar (glucose).

People with hepatitis B or C should limit how much alcohol they drink, and those with liver damage should avoid alcohol altogether. Not smoking and cutting down or stopping drug use are also important for overall health.

  • Eat a balanced diet including vegetables, fruit and whole grains.
  • Get regular moderate exercise.
  • Don’t smoke.
  • Reduce or eliminate alcohol and drug use.
  • Get enough sleep.
  • Find ways to reduce stress.

See Further information for details of organisations that can provide more information and advice on living with hepatitis C.

HIV & hepatitis

Published April 2015

Last reviewed April 2015

Next review April 2018

Contact NAM to find out more about the scientific research and information used to produce this booklet.

Hepatitis information

For more information on hepatitis visit infohep.org.

Infohep is a project we're working on in partnership with the European Liver Patients Association (ELPA).

Visit infohep.org >
This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap
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This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.