Hepatitis C

Hepatitis C often goes undetected at the start. Only sometimes do the symptoms develop within the first few weeks or months of infection. They include more general symptoms like:

• Tiredness
• Exhaustion
• Nausea
• Pain in the upper abdomen
• Flu-like symptoms

In rare cases the skin or whites of the eyes might turn yellow. That is called jaundice or icterus.

If hepatitis C becomes chronic, severe symptoms often only develop after several years. They are usually a sign that the liver or other organs have been damaged by the chronic inflammation.

The hepatitis C virus gets into the body via direct blood contact, meaning an infected person’s blood gets into another person’s bloodstream. That mainly happens in Germany when people take drugs, for instance when they share needles. But the virus can also be passed on through shared pipes, snorting tubes and other utensils if the people using them have small wounds on their lips or in their mouth or nose.

Hepatitis C is only very rarely passed on during sex. That is most common when small wounds lead to direct contact with blood, e.g. during sexual practices where you can harm yourself (often without noticing). The virus can also be transmitted during menstruation if the menstrual blood comes into contact with a partner’s wound.

Infections are possible in healthcare professions, too, such as injuries that pierce the skin caused by surgical instruments or needles that have come into contact with the virus. But the risk of infection is then lower than 1%. Patients become infected even more rarely, for instance during surgery or dialysis.

About 5% of pregnant women with the infection pass the virus on to their child, usually during birth.

In over 40% of people with the infection, it is unclear how they actually got the virus.

Since 1991, it has been practically impossible to get the virus from a blood transfusion in Germany because starting then all blood reserves have been tested for hepatitis C viruses. Donated organs are also tested for hepatitis C.

The virus is not transmitted by sneezing, kissing or hugging.

About 0.3% of people in Germany have chronic hepatitis C. About 5 out of 100,000 people develop a new hepatitis C infection each year. Most affected people are adults.

It takes between two weeks and six months for the disease to develop after infection. Most people don’t notice the infection at first because they have no or only general symptoms that can have many other causes.

Some people’s immune systems successfully fight off the virus in the first six months: Around 20 to 40% of infected people recover without treatment. But in about 60 to 80% of people, the immune system isn’t able to get rid of the virus. These people develop a permanent (chronic) inflammation of the liver that only very rarely clears up without medication. It also often goes unnoticed for a long time. Liver damage is common later on.

You can become infected with hepatitis C more than once. Recovery from an infection does not protect from reinfection.

Chronic hepatitis C can cause the inflamed tissue in the liver to harden and scar. This is called liver fibrosis. The liver then starts working less and less effectively. As the fibrosis gets worse, it causes cirrhosis of the liver. The liver is then usually permanently damaged. Severe advanced cirrhosis can lead to liver failure.

Up to 20% of people with chronic hepatitis C develop cirrhosis within 20 years. About half of all people with cirrhosis die within five years. Cirrhosis also increases the risk of liver cancer.

Fluid can collect in various parts of the body as a result of severe liver damage. Fluid retention in the abdomen that can be seen from outside the body is typical (ascites). Varicose veins can develop if the blood can no longer pass through the liver normally and too much blood is then diverted into the small veins in the food pipe or entrance to the stomach. They often bleed lightly, but sometimes the bleeding can be severe and even life-threatening.

Chronic hepatitis C can also increase the risk of other diseases. These include

• Vascular inflammation
• Lymphoma
• Metabolic disease (such as thyroid disease or diabetes)
• Kidney disease
• Skin diseases and itching

Hepatitis C can also cause psychological symptoms, including depression. Symptoms such as exhaustion can be a factor there, but so can the fact that people with hepatitis C may become socially withdrawn.

In some cases, hepatitis C develops together with hepatitis B or HIV infection because they are each transmitted in a similar way. The risk of complications is then especially high.

Hepatitis C can be diagnosed with a blood test. A number of different tests are done one after another:

• Test for antibodies: Antibodies can be detected about eight weeks after infection. They remain in the blood after the infection is gone. So, a positive test result does not necessarily mean that you are currently infected, but that you have been infected with the virus at some time in your life.
• Test for the virus: If antibodies are detected, a test will then be done to see if the virus can be found in the blood. If it is, you have hepatitis C and can pass the virus on to other people. Viruses can already be detected a few days after infection.
• Test for virus type: The virus’s genetic characteristics are sometimes identified before starting treatment. That is important in certain situations to be able to select effective medication, such as in people with severe liver damage.

Further examinations are carried out if hepatitis C is diagnosed. Doctors will do blood tests and ultrasound scans to see if there is already any liver damage. It is only rarely necessary for samples of liver tissue to be taken under local anesthetic and then tested (liver biopsy). Tests for hepatitis A, hepatitis B, and HIV are recommended if you are diagnosed with hepatitis C.

In Germany, since 2021 people aged over 35 with statutory health insurance can have a blood test for hepatitis C once as part of the health check-up. The costs are covered by statutory health insurance. People who think they might have been infected with hepatitis C can have a test at any time.

People with an increased risk of hepatitis C are recommended to have a test at least once a year. That is particularly relevant for people who inject drugs. Lots of advice centers such as local health authorities and the German AIDS Support Society (Deutsche Aidshilfe) offer rapid tests, sometimes anonymously. The costs are between 10 and 20 euro depending on the advice center.

Medical and healthcare staff are tested for hepatitis C as part of occupational medical examinations.

You can prevent infection with hepatitis C by avoiding getting infected people’s blood in your body.

People who take drugs should only use their own equipment. Many towns and cities have drug consumption rooms or other drug support facilities. Drugs can be injected there under medical supervision and used needles or other equipment can be swapped for new ones. Other support is also available, including assistance in stopping the use of drugs. The German Office for Addiction Issues (Deutsche Hauptstelle für Suchtfragen, DHS) has a list of addiction advice centers.

People who work in the healthcare sector can avoid infection by following standard hygiene and protection measures. This includes wearing gloves, disinfecting your hands, and being cautious when handling cannulas.

Using condoms during sex can protect from infection via any small wounds in the mouth, on the penis, in the vagina, or in the anus. Femidoms also offer protection during vaginal sex.

It is quite rare for pregnant women with hepatitis C to pass the virus on to their child. There is not much that can be done to reduce the risk of infection during pregnancy or birth any more. Hepatitis C medication is not approved for use by pregnant women. It is not thought that a Cesarean section lowers the risk of infection during birth. Breastfeeding is usually possible. Nipple shields can protect from bleeding wounds on the nipples. Mothers who have hepatitis C can also request professional breastfeeding advice.

Unlike hepatitis A and B, there is no vaccine that protects against infection with hepatitis C.

Treatment is started as soon as possible for chronic hepatitis C. It is sometimes possible to wait a few weeks with acute hepatitis C to see if it clears up by itself. But because the infection often doesn't go away, fast treatment is often recommended.

Highly effective and well-tolerated medications are available for treating hepatitis C. They are usually taken for 8 to 12 weeks, and in rare cases for 16 to 24 weeks. This gets rid of the virus in over 95% of people with hepatitis C. Complications can then be prevented from getting bad or avoided altogether. The treatment is also effective if the liver is already damaged. You are no longer contagious after successful treatment.

The medications stop the virus from reproducing. Various medications are available. Which ones are an option depends on factors like how severely damaged the liver is, and sometimes the strain of virus you are infected with. In Germany, these medications are approved for adults and children over the age of three years. But they should not be taken during pregnancy.

A liver transplant is an option if the liver has become severely damaged.

You can continue living a normal life as long as the symptoms of the illness allow for it. Aside from taking a few precautions, there is no reason to limit what you do in everyday life. The precautions involve making sure your blood doesn’t come into contact with anyone else’s. People with hepatitis C are allowed to continue working in all professions, including healthcare.

Chronic hepatitis C in particular affects performance and wellbeing. Lots of people with hepatitis C feel embarrassed or guilty about their illness. They worry about, or experience, being excluded because of their illness. That is why some people avoid social contact. And many people are scared of infecting other people, so they may keep to themselves.

The good treatment options are a particular source of hope. Protective measures can also prevent infections. You can find help and a sympathetic ear in a support group or at an information center.

Hepatitis C is a notifiable disease. That means that laboratories or doctors have to notify health authorities if they suspect or know that somebody is infected with hepatitis C. But patient-doctor confidentiality still applies towards other people and institutions.

When people are ill or need medical advice, they usually go to see their family doctor first. Information about health care in Germany can help you to navigate the German health care system and find a suitable doctor. You can use this list of questions to prepare for your appointment.