- Living with hepatitis c
Hepatitis C is a virus that can infect and damage the liver.
You can become infected with hepatitis C if you come into contact with the blood or, less commonly, body fluids of an infected person.
In most cases, hepatitis C causes no noticeable symptoms until the liver has been significantly damaged.
When symptoms do occur, they are often vague and can be easily mistaken for another condition. Symptoms include:
- flu-like symptoms, such as a high temperature and loss of appetite
- feeling tired all the time
Because of this, many people remain unaware that they are infected by hepatitis C.
Read more about the symptoms of hepatitis C.
How do you get hepatitis C?
The hepatitis C virus is present in the blood and, to a much lesser extent, the saliva and semen or vaginal fluid of an infected person. It is particularly concentrated in the blood, so it is usually transmitted through blood-to-blood contact.
Habitual drug users are not just at risk. People who have only injected drugs once in their life have been known to develop hepatitis C.
Less commonly, people can get hepatitis C through sex or being exposed to infected body fluids at work.
Read more about the causes and risk factors of hepatitis C.
Because hepatitis C often causes no obvious symptoms, testing is usually recommended if you are in a high-risk group, such as being a current or former injecting drug user.
Your doctor, sexual health clinic, GUM (genitourinary medicine) clinic or drug treatment service all offer testing for hepatitis C. It can be done using a blood test.
The sooner treatment begins after exposure to the hepatitis C virus, the more likely it is to succeed.
Read more about who should be tested for hepatitis C.
Treating hepatitis C
Hepatitis C can be treated with antiviral medicines that are designed to stop the virus from multiplying inside the body and prevent liver damage.
Two widely used antiviral medications are interferon and ribavirin.
The different strains of hepatitis C are known as genotypes, and some genotypes respond better to treatment than others.
With treatment, around half of people with genotype 1 will be cured, and around 8 out of 10 people with genotypes 2 and 3 will be cured.
Two new medications, released in 2011, called boceprevir and telaprevir, have been found to be effective in some people who do not respond to conventional antiviral treatments.
Read more about treating hepatitis C.
Who is affected?
Hepatitis C is more common in men than women as men are more likely to inject drugs.
Unlike other forms of hepatitis, there is no vaccine for hepatitis C.
Two ways to reduce your risk of catching hepatitis C are:
- Never share any drug-injecting equipment with other people (not just needles, but also syringes, spoons and filters).
- Use a condom during sex.
Read more about preventing hepatitis C.
Stages of infection
The first six months of a hepatitis C infection are known as acute hepatitis C. Around one in four people will fight off the infection and will be free of the virus.
In the remaining three out of four people, the virus will stay in their body for many years. This is known as chronic hepatitis C.
Depending on other risk factors, such as alcohol use, between 10% and 40% of people with untreated chronic hepatitis C will go on to develop scarring of the liver (cirrhosis), often up to twenty years after first catching the virus.
Around one in five people with cirrhosis will then develop liver failure, and 1 in 20 will develop liver cancer, both of which can be fatal.
Read more about the complications of hepatitis C.
Only around one in four people will have symptoms during the first six months of a hepatitis C infection. This stage is known as acute hepatitis C.
The symptoms may include:
- a high temperature of 38C (100.4F) or above
- loss of appetite
- stomach pains
- feeling sick
- being sick
These symptoms occur a few weeks after infection.
In people who do have symptoms of acute hepatitis C, around one in five of them will also experience yellowing of the eyes and skin. This is known as jaundice.
In an estimated one in four cases of hepatitis C, the immune system will successfully kill the virus and the person will have no further symptoms (unless they become infected again).
In the remaining cases, the virus persists inside the body for many years. This is known as chronic hepatitis.
Chronic hepatitis C
The symptoms of hepatitis C can vary widely from case to case. In some people, symptoms may be barely noticeable. In others, they can have a significant impact on quality of life.
The symptoms can also go away for long periods of time (remission) and then return.
Some of the most commonly reported symptoms of hepatitis C include:
- feeling tired all the time – sleeping does not seem to help improve energy levels
- problems with short-term memory, concentration and completing relatively complex mental tasks such as mental arithmetic – many people describe this combination of symptoms as "having a brain fog"
- mood swings
- indigestion or bloating
- joint and muscle aches and pain
- itchy skin
- flu-like symptoms, like those that occur in the acute phase of the infection
- abdominal pain
- pain in the liver area (which is located in the right upper side of your abdomen)
When to seek medical advice
See your doctor if you persistently have any of the chronic symptoms above, or if they keep returning, especially if you inject drugs or have injected drugs in the past.
None of the symptoms above automatically means you have hepatitis C, but they do require further investigation.
You can become infected with hepatitis C if you come into contact with the blood or, less commonly, the body fluids of an infected person.
The blood has the highest concentration of the virus, so exposure to infected blood is the easiest way to get the virus. Just a small trace of blood can cause an infection. The virus can survive outside the body in patches of dried blood on surfaces for at least 16 hours, but no longer than four days (at room temperature conditions).
Hepatitis C is most commonly spread by people sharing contaminated needles, spoons and filters to inject drugs.
Injecting yourself with just one contaminated needle may be enough to become infected.
There have also been reports of people catching hepatitis C when sharing bank notes or straws to snort cocaine.
Cocaine can damage the inside of the nose, leading to bleeding. It possible to then inhale contaminated blood and become infected.
Less common causes
Hepatitis C may be transmitted during unprotected sex (sex without using a condom), although this risk is considered very low, especially if you are in a long-term, stable relationship. The risk of transmission through sex may be higher among men who have sex with men.
If your partner has hepatitis C, you should be tested for the condition.
Blood transfusions and treatment abroad
If you have a blood transfusion or medical or dental treatment overseas where medical equipment is not sterilised properly, you may become infected with hepatitis C. The virus can survive in traces of blood left on equipment.
Sharing toothbrushes, scissors and razors
There is a potential risk that hepatitis C may be passed on through sharing items such as toothbrushes, razors and scissors.
Equipment used by hairdressers can pose a risk if it has been contaminated with infected blood and not been sterilised or cleaned between customers. However, most salons operate to high standards, so this risk is low.
Tattooing and body piercing
There is a potential risk that hepatitis C may be passed on through using tattooing or body piercing equipment that has not been properly sterilised.
However, most tattoo and body piercing parlours in the UK operate to high standards and are regulated by law, so this risk is low.
Mother to child
There is a small (1 in 20) risk that a mother who is infected with the hepatitis C virus will pass the infection on to her baby.
Needlestick and splash injury
There is a small (approximately 1 in 30) risk of getting hepatitis C if your skin is accidentally punctured by a needle used by someone with hepatitis C. There is also a small risk of transmission if a splash of infected blood gets in your eyes or mouth.
Healthcare workers, nurses and laboratory technicians are at increased risk because they are in regular close contact with blood and body fluids.
If you think you may have been exposed to hepatitis C, taking a test will put your mind at rest or, if the test is positive, allow you to start treatment early.
Your doctor, sexual health clinic, GUM (genitourinary medicine) clinic or drug treatment service all offer testing for hepatitis C.
Testing for hepatitis C
Hepatitis C is diagnosed with two blood tests:
- the antibody test
- the PCR test
The antibody test
This blood test determines whether you have ever been exposed to the hepatitis C virus by testing for the presence of antibodies to the virus.
Antibodies are proteins that are produced by your immune system to fight invading particles, such as viruses, when they enter your bloodstream.
The test will not show a positive reaction for some months after infection. This is because your body takes time to make these antibodies.
If the antibody test is negative but you have had symptoms, or you have been exposed to hepatitis C, you may be advised to have the test again.
A positive test (showing antibodies) indicates that you have been infected at some stage. It does not necessarily mean you are currently infected, as you may have since cleared the virus from your body.
The only way to tell if you are currently infected is to have a second blood test, called a PCR test.
The PCR test
This blood test checks if the virus is still present by detecting whether it is reproducing inside your body.
A positive test – often reported as "detectable" or "detected" – means that your body has not fought off the virus, and the infection has progressed to a chronic (long-term) stage.
Test results usually come back within two weeks.
It is recommended that the following groups of people should be tested for hepatitis C:
- ex-drug users
- current drug users
- recipients of organ or tissue transplants from in countries where hepatitis C is common
- babies and children whose mothers have hepatitis C
- anyone accidentally exposed to the virus (needlestick or splash injury), such as health workers
- people who have received a tattoo or piercing where equipment may not have been properly sterilised
- sexual partners of people with hepatitis C
If you continue to engage in high-risk activities, such as injecting drugs frequently, then regular testing may be recommended. Your doctor will be able to advise you.
Other tests and referral
If you have the virus, your doctor may recommend other tests to check for damage to your liver. These include liver function tests, which measure certain enzymes and proteins in your bloodstream that indicate whether your liver is damaged or severely inflamed.
Your doctor will also refer you to a specialist centre for an assessment and to discuss treatment. The specialist will ask for more checks to assess the extent of liver damage, including blood tests and scans of the liver and abdomen.
The amount of liver damage can also be assessed by taking a sample of your liver tissue for examination. This is called a liver biopsy and involves passing a hollow fine needle through the skin into your liver. The cells are then examined under a microscope to assess the amount of liver damage and cirrhosis (scarring). The specialist will advise you about the need for a liver biopsy. However, a biopsy is not always necessary before treatment.
Most cases of acute hepatitis C are not treated as the person either does not have any symptoms or mistakes the symptoms for the flu.
If hepatitis C is detected during this acute phrase, it is normally recommended that you are monitored for three months to see if your body fights off the virus.
If it doesn’t, a six-month course of pegylated interferon (see below) may be recommended. This is usually 95% successful at curing the infection.
Chronic hepatitis C
Treatment for chronic hepatitis C usually involves using a combination of two medication:
- pegylated interferon (given as an injection) – a synthetic version of a naturally occurring protein in the body that stimulates the immune system to attack virus cells
- ribavirin (given as a capsule or tablet) – a type of antiviral drug that stops hepatitis C from spreading inside the body
This is known as combination therapy.
Course and dosage
The length of your recommended course will depend on what genotype of the hepatitis C virus you have.
If you have genotype 1, a 48-week course is recommended. For all other genotypes, a course of 24 weeks will be recommended.
You may be tested 12 weeks into your course with a blood test. If the test shows that the medications are having little effect in removing the virus, it may be recommended that treatment is stopped as further treatment may be of little use.
You are normally given weekly injections of pegylated interferon. Ribavirin is normally taken twice a day with food.
How effective is treatment?
The effectiveness of combination therapy depends on the genotype of the hepatitis C virus.
Genotype 1 is more challenging to treat. Only half of people treated with combination therapy will be cured.
Other genotypes respond better to treatment, with a cure rate of around 75–80%.
Side effects of combination therapy are common and can be severe. Three out of four people being treated will experience one or more side effects.
Side effects of combination therapy include:
- a drop in the number of red blood cells (anaemia), which can make you feel tired and out of breath
- loss of appetite
- problems sleeping (insomnia)
- difficulties concentrating and remembering things
- hair loss
- feeling sick
- flu-like symptoms, such as a high temperature, that occur in the 48 hours after an interferon injection
Side effects may improve with time as your body gets used to the medications.
Tell your care team if any side effect is becoming particularly troublesome as your dosage may need to be adjusted.
Coping with side effects may be challenging, but it is recommended that you continue to take medication as instructed.
Missing doses to try to minimise side effects will reduce the chances of you being cured.
Ribavirin and pregnancy
Ribavirin will harm an unborn child if it is taken by a pregnant woman. If you are a woman of childbearing age, you will need to have a pregnancy test to confirm you are not pregnant before treatment can begin. If you find out you are pregnant, treatment will need to be delayed until you have your baby.
If you are not pregnant, you will still need to use a reliable method of contraception (preferably two methods) if you are sexually active.
Men who are taking ribavirin should not have sex with a pregnant woman unless they use a condom. If their partner is not pregnant but is of childbearing age, she will need to be tested for pregnancy each month during treatment and for seven months after treatment has stopped.
In 2011, two new medications – called boceprevir and telaprevir – were released. Both medications are known as protease inhibitors.
Protease inhibitors block the effects of enzymes that viral cells need to reproduce.
Some experts have stated that these new medications could be effective in some people who do not respond to conventional combination therapy.
People who do not respond to combination therapy are recommended to take a 48-week course of boceprevir or telaprevir, as a tablet three times a day.
The medications are designed to be used in combination with pegylated interferon and ribavirin and not as a sole treatment.
It is still unclear whether boceprevir or telaprevir is more effective.
- have genotype 1 hepatitis C that has not previously been treated (a genotype is a particular viral strain)
- have been treated for genotype 1 hepatitis C but treatment was unsuccessful
Side effects of boceprevir include:
- flu-like symptoms such as a high temperature and chills
- loss of appetite
- feeling sick
- weight loss
- shortness of breath
Side effects of telaprevir include:
- feeling sick
- being sick
- itchy skin rash
Deciding against treatment
Some people with chronic hepatitis C decide against treatment. There can be several reasons for this, for example if they:
- do not have any symptoms
- are willing to live with the risk of cirrhosis at a later date
- do not feel that the potential benefits of treatment outweigh the side effects that treatment can cause
Your care team can give you advice about this, but the final decision about treatment will be yours.
If you decide not to have treatment but then change your mind, you can still request to be treated.
If the virus is cleared with treatment, you are not immune to future infections of hepatitis C.
This means, for example, that if you continue to inject drugs after taking the medicines, you risk becoming re-infected with hepatitis C.
We asked Dr Janice Main, a consultant in infectious diseases at St Mary’s Hospital, London, what she would want to know if she had hepatitis C.
What symptoms can I expect?
If you catch hepatitis C, you might not notice. If you develop symptoms, you may feel slightly unwell and be off your food about six to eight weeks after being infected.
It would be unusual to get any more of the severe symptoms that some other types of hepatitis cause, such as jaundice.
How serious is it?
Between 20% and 40% of people who catch hepatitis C experience have no further problems.
However, in 60 to 80% of cases, infection becomes chronic (long-term). If left untreated, the infection can cause progressive liver damage.
Liver damage can lead to cirrhosis (a condition in which the liver becomes scarred), liver failure and liver cancer.
How can I prevent spreading it?
Hepatitis C is a bloodborne infection, so be careful about sharing razors or toothbrushes. Always cover any cuts to the skin.
If you are an injecting drug user, use clean needles and do not share ‘works’ (drug equipment). Dispose carefully of used needles and keep them away from children.
Always use condoms if you have sex.
If you are planning to conceive or you are pregnant, talk to the doctor at the antenatal clinic. They can arrange special blood tests for you and your baby.
Is there any treatment?
Yes. Drugs to treat hepatitis C are improving all the time, and there are now effective treatments.
Treatment is especially effective if it is given as soon as someone contracts hepatitis C (at the acute phase). However, the treatment can still be effective even if hepatitis C has become established.
The doctor will assess your general medical and mental health before offering treatment, as the treatment course can have significant side effects.
How will I be looked after?
You should be referred to a specialist hepatologist (liver specialist), gastroenterologist (specialist of the stomach and intestines) or infectious diseases specialist, who can monitor your condition.
You can expect to see them two or three times initially for blood tests, ultrasound and possibly a liver biopsy.
After that, you will usually see them every six to 12 months.
If you're offered medication, you will be seen more frequently to monitor whether the treatment is working, and how it is affecting you.
There is no vaccination to protect against hepatitis C, but there are ways to reduce your risk of becoming infected.
Injecting drug users are most at risk of contracting the infection. Never share any injecting equipment, such as needles, syringes, spoons and filters.
Also, do not share razors, toothbrushes or towels that might be contaminated with blood. Use a condom if you are having sex with a new partner.
If you have hepatitis C
You can reduce the risk of passing hepatitis C on to other people by:
- keeping personal items, such as toothbrushes or razors, for your own use
- cleaning and covering any cuts or grazes with a waterproof dressing
- cleaning any blood from surfaces with household bleach
- not sharing needles or syringes with others
- not donating blood
- using condoms when having sex with new partners (seek advice about long-term partners)
Living with hepatitis c
If you have hepatitis C, find the answers to the following questions below:
- Do I need to eat a special diet?
- Could anything I do make hepatitis C worse?
- Is there anything else I can do to help myself?
- Do I have to tell my boss?
- Can I travel abroad?
- Can I have a baby if I or my partner has hepatitis C?
Do I need to eat a special diet?
You will not usually need to change what you eat, as long as you eat a healthy, varied diet.
If your liver is badly damaged, however, your doctor may suggest limiting your intake of salt and protein to avoid putting too much strain on your liver. The hospital dietitian can advise you on what you can and cannot eat.
Could anything I do make hepatitis C worse?
Drinking alcohol can increase the damage to your liver. If you have hepatitis C, cut out or limit your intake of alcohol. If you need advice about this, ask your doctor or contact an alcohol self-help organisation.
If you are concerned that you are addicted to alcohol and are unable to stop drinking, contact your doctor. Medications are available to help people quit alcohol.
Read more about treating alcohol misuse.
Is there anything else I can do to help myself?
Control your weight by eating a healthy diet and exercising regularly (aim for 150 minutes a week).
Some studies suggest 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.
Do I have to tell my boss?
You do not have to tell your boss that you have hepatitis C, unless you are a healthcare worker.
Can I travel abroad?
If you are planning to travel abroad, seek advice from your doctor or a travel clinic about vaccination. People with hepatitis C are advised to have hepatitis A or hepatitis B vaccinations as routine, regardless of whether they're travelling.
It is also a good idea to take any documentation, such as details of blood tests or medical records, in case you need medical treatment abroad.
Read more about travel vaccinations.
Can I have a baby if I or my partner has hepatitis C?
Yes, but there is a small risk (1 in 20) of hepatitis C passing from mother to baby. The risk is higher if the mother also has HIV. If the male partner has hepatitis C, there is a very small risk the virus could spread to the female during sex. If you are female with a male partner who has hepatitis C, you may want to have a hepatitis C test.
If it is not treated, chronic hepatitis C can sometimes cause scarring of the liver (cirrhosis). This can develop up to 20 years after you first become infected.
A number of factors can increase your risk of getting cirrhosis, such as:
- drinking alcohol
- having type 2 diabetes
- contracting hepatitis C at an older age
- having HIV or other types of hepatitis, such as hepatitis B
Depending on these factors, the risk of cirrhosis can range from 10% to 40%.
Symptoms of cirrhosis include:
- tiredness and weakness
- loss of appetite
- weight loss
- feeling sick
- very itchy skin
- tenderness or pain around the liver
- tiny red lines (blood capillaries) on the skin above waist level
Other than a liver transplant, there is no cure for cirrhosis. However, treatments can help relieve some of the symptoms of cirrhosis and prevent the condition from worsening.
Read more about the treatment of cirrhosis.
In severe cases of cirrhosis, the liver loses most or all of its functions. The liver has a wide range of functions, such as filtering toxins from the blood and producing a number of important hormones.
This is known as liver failure or end stage liver disease. Liver failure occurs in around one in five people with hepatitis-associated cirrhosis.
Symptoms of liver failure include:
- hair loss
- build-up of fluid in the legs, ankles and feet (oedema)
- build-up of fluid in your abdomen that can make you look heavily pregnant (ascites)
- dark urine
- black, tarry stools or very pale stools
- frequent nosebleeds and bleeding gums
- a tendency to bruise easily
- vomiting blood
Once liver failure has occurred, it is usually possible to sustain life for several years using medication. However, a liver transplant is currently the only way to cure liver failure.
It is estimated that around 1 in 20 people with hepatitis-associated cirrhosis will develop liver cancer.
Symptoms of liver cancer include:
- unexplained weight loss
- feeling sick
It is usually not possible to cure liver cancer, especially in people with cirrhosis, though chemotherapy can be used to slow the spread of the cancer.
Read more about the treatment of liver cancer.
Other rarer complications of chronic hepatitis C include:
- dryness of the mouth and eyes (caused by the destruction of sweat, saliva and tear glands)
- patches of itchy skin (lichen planus)
- swelling inside the kidneys (glomerulonephritis)
- sensitivity to light, leading to blisters and ulcers on the skin
- underactive thyroid gland
- overactive thyroid gland
- cryoglobulinemia (a disorder in which abnormal proteins may damage the skin, nervous system and kidneys)
- non-Hodgkin's lymphoma (a type of cancer that affects the body's lymphatic system)
- insulin resistance and diabetes
- gallbladder disease