Understanding Hepatitis C from Diagnosis to Stage 4 (End-Stage Liver Disease)

What is hepatitis C?

Hepatitis C is a viral infection of the liver. It can damage the liver over time and lead to scarring. Chronic hepatitis C can cause a range of liver injury, from mild inflammation to severe liver damage and cirrhosis. End-stage liver disease occurs when the liver is so severely scarred and damaged by the virus that it can’t function normally.

You become exposed to the hepatitis C virus (HCV) from direct contact with infected blood. Sharing or getting stuck with an infected needle, sharing a razor or other personal item with someone who has the disease, or having received blood or blood products prior to 1992 are common ways of transmitting the virus. If you’re pregnant and you have hepatitis C, your newborn baby can get hepatitis C from you at the time of birth. It’s extremely rare to become infected with HCV during sexual activity, unless blood and open wounds are present.

Not everyone who is infected with the hepatitis C virus (HCV) will experience the disease in the same way. It’s estimated that about 15 to 25 percent of people infected with HCV will clear the virus from their body without treatment. Those who don’t clear the virus will go on to develop chronic hepatitis C.

Without treatment, some will progress to end-stage liver disease within a few years. Still, others may not develop significant liver damage until decades later.

What happens during the acute phase

The first six months of hepatitis C infection is called the acute or short-term phase.

Most people who have recently been infected with HCV don’t have any symptoms. Those who do develop symptoms may experience:

  • abdominal pain
  • appetite loss
  • dark urine
  • fatigue
  • fever
  • gray-colored stools
  • joint pain
  • nausea, vomiting
  • a yellowing of the skin and whites of the eyes called jaundice, which is a sign that the liver isn’t working normally

In about one in four people, the immune system destroys the virus during this phase. Most people infected with HCV progress to the chronic phase.

What happens during the chronic phase

After six months, most people with hepatitis C go into the chronic phase of the disease. This means their body hasn’t been able to fight off the virus and they have developed a long-term infection.

Most people still don’t have any symptoms during the chronic phase. Often, people aren’t diagnosed until they get screened or until their doctor detects high levels of liver enzymes during a routine blood test.

Stages of liver damage

The hepatitis C virus attacks your liver. Your immune system releases inflammatory substances in response. These substances stimulate your liver to produce fibrous proteins, like collagen to repair the damage. Collagen and other proteins can build up within the liver. This creates scar tissue.

A buildup of scar tissue in your liver is called fibrosis. It can prevent blood from flowing to your liver cells and change the function of your liver. Over time, the liver cells die and the liver no longer functions normally.

The METAVIR score is one method used to measure fibrosis in people with hepatitis C. Scoring is divided into five stages:

  • stage 0: no fibrosis
  • stage 1: mild fibrosis without walls of scarring
  • stage 2: mild to moderate fibrosis with walls of scarring
  • stage 3: bridging fibrosis or scarring that has spread to different parts of the liver but no cirrhosis
  • stage 4: severe scarring, or cirrhosis

Cirrhosis and liver failure

Without treatment for chronic hepatitis C, the scar tissue replaces normal liver tissue. As more damage continues, the body can no longer keep up with the failing liver. This is considered end-stage liver disease or ACLD (advanced chronic liver disease).

At first, the body does its best to compensate for poor liver function. But over time, the liver becomes so scarred that it doesn’t work properly. It’s no longer able to perform its vital functions for the body.

People with cirrhosis can have complications such as:

  • easy bruising and bleeding
  • confusion
  • fatigue
  • infections
  • unexplained itchiness
  • jaundice
  • loss of appetite
  • nausea
  • swelling in the legs and abdomen
  • weight loss

Hepatitis C and cirrhosis both increase your risk for liver cancer.

Treatment by stage

If hepatitis C is recognized and diagnosed in the acute phase, treatment may be recommended for certain individuals. Most others usually follow up with a hepatitis C specialist to monitor their liver function and to see if the virus clears on its own. Those who clear the virus do not need treatment. Those who do not clear the virus after six months will typically be treated.

The same medications that are used for treating chronic hepatitis C are also used to treat individuals early on in the acute phase.

Once chronic hepatitis C is diagnosed, treatment is typically recommended. Treatment can stop or even reverse fibrosis and protect against further liver damage.

A liver biopsy involves removing a piece of the liver for testing. This will help your doctor see how much damage you have. Which drug, or combination of drugs, you get depends on any ongoing health problems, how much your liver has been damaged, which of the hepatitis C virus strains you have, and whether your type of hepatitis C is resistant to any medication. There are at least six types of the hepatitis C virus currently identified.

Injections of pegylated interferon used to be the main treatment for hepatitis C. Today, oral antiviral drugs are typically used in combination instead of interferon. Some combination medications include Harvoni (ledipasvir/ sofosbuvir), Zepatier (elbasvir/grazoprevir) and Technivie (ombitasvir/ paritaprevir/ritonavir). The recent medications Epclusa (sofosbuvir/ velpatasvir), Vosevi (sofosbuvir/velpatasvir/voxilaprevir) and Mavyret (glecaprevir/pibrentasvir) are approved for all six types of HCV.

The treatment goal is to have a sustained virological response (SVR). This means your doctor can’t detect any HCV in your blood 12 weeks after completing treatment. With new hepatitis C drugs, the disease is curable in 90% or more of cases.

By the time the disease reaches end stage, it can’t be reversed. You can take medicine to control symptoms like fatigue, pain, and itching. If your liver stops working, the only option is to have a liver transplant.

Talking with your doctor

If you have been diagnosed with hepatitis C, you’ll see a hepatologist. A hepatologist is a doctor who specializes in liver diseases. Your hepatologist will evaluate any liver damage and discuss your treatment options.

It’s important to get treated as soon as possible. New medications can cure hepatitis C and prevent liver complications in most people. Along with taking medicine, you should find out what else you can do to protect your liver and stay healthy. Avoiding alcohol and other medications that affect the liver may be recommended as well.

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