Understanding hepatitis C and staying safe

Writers: Danny Morris and Magdalena Harris
Editor: Magdalena Harris
London School of Hygiene & Tropical Medicine, Harris and Morris © 2015

Thanks to all who helped in the development of this resource.

Particularly:

Members of the Hep C Resource focus groups
Participants of the London School of Hygiene & Tropical Medicine Hep C research projects
Martin McCusker and members of the Lambeth Service Users Forum
Andrew Preston, Exchange Supplies
Ashley Brown, Consultant Hepatologist at St. Mary’s and Hammersmith Hospitals
Janet Catt, Kath Oakes and Jo Schultz, Viral Hepatitis Clinical Nurse Specialists
Chris Ford, Clinical Director IDHDP
Emma Ward, Jim Conneely and Samantha May, The Hepatitis C Trust
Eliot Albers, INPUD
Emma Burke and Helen Harris, PHE
LJWG, Dovetail, Lumieres and Gilead Sciences

This booklet draws on work by Dr Magdalena Harris at The London School of Hygiene & Tropical Medicine.

Dr Harris is funded by a National Institute for Health Research postdoctoral fellowship [NIHR-PDF-2011-04-0311].

All quotes are genuine (all names have been changed) and are the result of Dr Harris’ interviews with service users and people living with hepatitis.

booklet-logos

This booklet has been developed through a joint working initiative between The London Joint Working Group on Substance Use and Hepatitis C (LJWG), Gilead Sciences Ltd, Addaction and Imperial College Healthcare NHS Trust.

Gilead Sciences had no influence over the content of this resource.

June 2015

HCV/UK/15-01/MM/1028

What is Hep C?

Hepatitis means swelling (inflammation) of the liver, and it has many different causes.

Hepatitis can be caused by liver toxic chemicals, heavy drinking (alcoholic hepatitis), some immune conditions or by one of a group of viruses, known as the hepatitis viruses, including hep A, B, and C.

The hepatitis C virus (hep C) is carried in the blood, and affects the liver by preventing it from working properly, and causing the liver cells to die. Over time, the virus can cause inflammation, scarring (fibrosis) and, sometimes, significant damage to the liver (cirrhosis).

Cirrhosis increases the risk of developing liver cancer, which can be fatal.

Hep C can be treated and, in most cases, it can be cured.

What is the liver?

The liver is one of the largest and hardest working organs in the body, with over 500 vital functions. It is located behind the ribcage on the right side of the body.

The liver is wedge-shaped, divided into left and right lobes, weighs around 1.5 kg and measures approximately 13cm by 18cm.

Why is it so important?

The liver has many functions relating to digestion, metabolism, filtering the blood, fighting infection and the storage of nutrients in the body. It has a vital role in supporting almost every other organ of the body and is essential for maintaining good health.

The liver has an incredible capacity for regeneration, but permanent scarring and/or damage to the liver tissue can limit its function, cause poor health, and potentially lead to liver cancer.

How is hep C different from hep A and hep B?

Hep A and hep B are caused by other viruses that also affect the liver. These viruses can cause similar problems but they are passed on in different ways.

Hep C is blood-borne, which means it is transmitted through direct blood to blood contact.

Hep A can be transmitted through contaminated water or food. It is also found in the faeces of people who have the virus.

Hep B is transmitted through direct blood to blood contact or unprotected sex with a person who has the virus.

You can be vaccinated against hep A and hep B – there is no vaccination for hep C.

ar3b

How common is hep C?

Hep C is a global health issue: It is estimated that around 180 million people worldwide (approx. 3%) have hep C.

In the UK:

  • Approximately 216,000 people have chronic hep C
  • Only 50% of people with hep C have been tested and diagnosed
  • Most new cases of hep C result from using contaminated injecting equipment
  • Around 50% of people who have ever injected drugs have hep C
  • People who received blood products before 1987 or a blood transfusion prior to 1991 may be at risk.
  • People who have had medical or dental treatment in a country where hep C is common and infection control is inadequate may have been at risk.

The progression of hep C

Acute stage

Acute hep C occurs after infection, and lasts for about six months.

  • Most people do not experience symptoms during the acute phase
  • Some people may have flu-like symptoms, including fever, tiredness, loss of appetite, stomach pains, nausea and vomiting and, occasionally, jaundice
  • Around 20 to 25% of people will clear hep C during the acute stage

Clearing the virus will not protect you against getting hep C again.

Chronic stage

  • The second stage is chronic (long-lasting) infection, where hep C remains in the body
  • The 75 to 80% of people who don’t clear the virus in the acute phase will develop chronic hep C

Having hep C doesn’t automatically mean you’ll experience symptoms or develop serious liver disease.

Hep C and liver damage

The longer you have lived with hep C, the more likely it is that you will experience some liver damage. This can range from mild to severe.

There is a higher risk of liver damage if you are: male; over 40 when you contracted hep C; overweight; also living with HIV, hep B or diabetes; a regular or heavy alcohol user.

Approximately one in five people with chronic hep C will develop cirrhosis (severe liver scarring) within 20 years. Liver cirrhosis is a slowly progressing condition in which the healthy liver becomes scarred, eventually preventing the liver from functioning properly. The scar tissue blocks the flow of blood through the liver and slows the processing of nutrients, hormones, drugs and toxins. Untreated, cirrhosis can lead to end stage liver disease, liver failure and liver cancer.

What happens if I get hep C?

Everyone’s experience will be different, but for most people hep C develops slowly. Hep C is known as a silent disease because the symptoms aren’t always obvious.

Symptoms may begin months or even years after getting hep C, and can come and go.

What are the symptoms of chronic hep C?

  • Symptoms can be mild to severe and can include:
  • Loss of energy and fatigue, much more than usual tiredness
  • Low mood, depression and irritability
  • Headaches
  • Disrupted sleep
  • Memory loss and difficulty concentrating – ‘brain fog’
  • Night sweats and chills
  • Loss of appetite, nausea and weight loss
  • Muscular pain and achy joints
  • Pain in the abdominal and liver area
  • Dry and itchy skin

Some hep C symptoms, particularly poor sleep, difficulty concentrating or ‘brain fog’ and general aches and pains are easily overlooked. These symptoms can be attributed to drug and alcohol use, age or overwork, rather than hep C itself.

Many people only realise how they were affected by symptoms once they clear hep C and begin to feel better.

Making lifestyle changes can help reduce symptoms and slow down the development of liver disease. These changes may include reducing the amount of alcohol you drink, eating a healthy diet, drinking plenty of water, exercising, managing stress and getting enough rest.

More information about living with hep C and managing common symptoms can be found in the Living With Hepatitis C section, and in the booklet Hep C Care.

Have I been at risk?

Hep C is a blood-borne virus: it is only spread when blood from someone with hep C enters someone else’s bloodstream. Only tiny amounts of blood are needed to transmit the virus.

Highest risk: Using a needle or syringe that has been used by someone else with hep C

  • Sharing other injecting equipment including cookers, filters and water is also high risk.

Other causes of hepatitis C transmission:

  • Having medical or dental procedures in countries where hep C is common and infection control is inadequate
  • Receiving blood products in the UK before 1987 or a blood transfusion prior to 1991
  • Acupuncture, tattooing, piercing or cosmetic injection procedures if any equipment is reused or inadequately sterilised
  • Occupational exposure for healthcare workers, for example through a needlestick injury
  • Sharing crack pipes or straws to snort drugs
  • Transmission from mother to baby during birth
  • Sexual activity where there is a risk of blood to blood contact
  • Sharing items such as razors or toothbrushes.

Hep C cannot be spread by:

  • Sharing cups, cutlery or dishes
  • Kissing or hugging
  • Holding hands
  • Sneezing or coughing

Testing for hep C

What do I do if I think I may be at risk?

If you think you might be at risk, then the only way to tell if you have hep C is to get tested. You cannot rely on symptoms or how you are feeling.

Getting a hep C positive test result can help you to:

  • Understand symptoms you might have been feeling for some time, such as fatigue
  • Make lifestyle changes (such as reducing alcohol consumption) to reduce your chance of developing advanced liver disease
  • Get support from your GP and referral to a specialist to monitor your liver health
  • Get expert advice around your treatment options
  • Reduce transmission risk to others
  • Get support from loved ones

The tests

Hepatitis C testing is a two-stage process requiring a blood sample. Often the same blood sample can be used for both the antibody and PCR test. Traditionally collected by needle and syringe, some areas can offer dried blood spot (finger-prick) testing or oral swab testing (antibody test only).

1. The antibody test

  • This will show if you’ve ever been exposed to hep C.
  • If you’ve been exposed to hep C, your immune system will have produced antibodies to try and fight it off. These antibodies remain even if the virus is no longer active.
  • If you have recently been at risk but the antibody test is negative you will need another test in a few months. Hep C can take 6 to 12 weeks to show up in the blood after infection (this is known as the window period).
  • A positive antibody test does not mean automatically you have current and ongoing (chronic) hep C. You will need a second (PCR) test to confirm if you’ve developed chronic hep C.

2. The PCR test

  • A PCR (also known as HCV RNA) positive test result will show if you have active (chronic) hep C.
  • If your PCR test is positive you should be offered a referral to a specialist service to check your liver health and discuss your treatment options.

Your rights to hep C testing and GP care

If you’ve been at risk, you have the right to have a hep C test at a location that suits you. Free and confidential tests are available at most GP services, sexual health clinics, drug treatment services and some pharmacies.

You may need to specifically ask for a hep C test, as this is not usually tested for in routine health checks.

Everyone is entitled to see a specialist to discuss hep C treatment options. If you have been diagnosed with hep C and would like a referral, ask your local healthcare worker or GP.

What if I don’t have a GP, or want to change the one I have?

You don’t need to be registered with a GP to get a hep C test or treatment referral, but they can be a good source of support and help manage any hep C health concerns.

If you live in the UK, you have the right to be registered with a GP practice close to where you live and to receive free NHS treatment when you need it.

If you’re not registered with a GP or want to change the one you have, visit the GP surgery you want to join and ask them to register you as a patient. They’ll ask you to complete a short form and provide documents showing your name and address, proving who you are and where you live.

You are entitled to register with a doctor if you are homeless. You can use a temporary address, such as a friend’s place or a day centre.

  • It can be worth asking friends, drug treatment workers or hep C organisations if they can recommend a GP who has an interest in hep C.
  • GPs who care for people who use drugs or work in partnership with drug treatment services, often know more about hep C and can be a good choice if you want a new doctor.

The NHS Constitution sets out your rights as an NHS patient. These rights cover how you access health services, the quality of care you should receive, the treatments and programmes available to you, confidentiality, information and your right to complain if things go wrong (see resources section).

If I test positive for hep C, who should I tell?

You are generally under no obligation to disclose that you have hep C but telling people close to you can provide a valuable source of support. There is no guarantee they will respond as positively as you like, which can make disclosure decisions difficult.

Some healthcare professionals can provide good guidance, but you may want to also talk to people who have hep C about their experiences. Hep C organisations can provide a helpful link to support groups as well as confidential information and advice (see resources section).

p1

Family and friends

Practical and emotional support from your family and friends can be important.

You cannot pass on hep C to your family and friends through everyday activities, such as sharing utensils, hugging or kissing although they may not understand this at first. Providing your loved ones with this booklet or putting them in touch with hep C organisations to get information and guidance (see resources section) can help reduce any fears or concerns.

Work

You are under no obligation to tell your employer you have hep C (unless you are a healthcare worker who conducts exposure-prone procedures). Some people find it easiest to say they have a ‘liver condition’ or other non-specific illness if they need to take time off work due to their hep C symptoms, hospital appointments or treatment. You can ask your doctor not to specify hep C on any appointment letters or medical certificates when you need to have time off work.

Finance

When applying for life insurance you are required to give consent for the release of your medical information from your GP. If you already have life insurance you are generally required to tell the insurance providers if you have hep C – if you don’t, it may invalidate your insurance.

Healthcare providers

There is no legal obligation to disclose your hep C to anyone providing you with healthcare, including dentists. This is because all NHS healthcare workers are required to comply with universal infection control precautions designed to ensure the safety of everyone regardless of whether an infection is known about or not. However, it might be in your best interests to let healthcare workers know about your hep C so they can provide care that takes into account any liver disease.

Disclosure requirements

There are only a few situations when you are required by law to disclose if you have hep C. These include: when applying for life insurance, blood-bank questionnaires (you cannot donate blood if you have hep C), if donating sperm, and if you are a healthcare worker who conducts exposure-prone procedures (e.g. surgery or dentistry). If you are unsure about any disclosure decisions or requirements, organisations such as The Hepatitis C Trust can provide confidential advice.

p2

Staying safe

Injecting drugs

Hep C is spread when blood from someone with the virus gets into someone else’s bloodstream. Most new cases of hep C in the UK result from the use of contaminated drug injecting equipment.

When injecting drugs (including heroin, crack or cocaine, speed, mephedrone, crystal meth and steroids) the best practice is to use new equipment and dispose of it safely to avoid catching hep C or passing it on.

Your local drug service should be able to provide you with sterile injecting equipment and disposal bins. Many areas also have pharmacy based needle exchanges, which supply injecting equipment.

exchange

Good injecting technique and using clean works can not only prevent hep C, hep B, HIV and bacterial infections, but can also help to reduce vein damage and injecting discomfort. If you have damaged veins or difficulties injecting, using new sharp works can make injecting easier, less stressful and less painful.

Harm reduction tips

If you’re homeless and have to inject in public places adopting best practices can be more difficult. Below are harm reduction tips that provide a number of options for different situations:

  • If possible, be prepared. Get more injecting equipment than you think you might need. Consider stashing sterile sealed equipment if there are safe places to do so.
  • Ideally use a sterile needle and syringe for every injection. If that’s not possible, thoroughly clean your works before using them.
  • If possible, don’t share any equipment (e.g. spoons, water containers, water, swabs, tourniquet) when preparing and injecting drugs. If you have to reuse cookers clean with soap and water or bleach solution first.
  • Use sterile or freshly boiled water to prepare your drugs.

If you don’t have access to sterile water amps or boiled water, tap water is probably the next best thing. Bottled water should be avoided unless it’s freshly opened and not been drunk from. Never use water – wherever it comes from – if it’s previously been used to flush out works

  • If possible, wipe down surfaces where your injection is being prepared: keep things as clean as possible.

If you can’t clean a surface for preparing your hit or if you’re injecting outside, use a layer of tissue, toilet paper, or newspaper to lay your injecting equipment on.

  • Try not to rush your drug preparation or injecting, as this can lead to more risks and a greater chance of discomfort, pain and vein damage.
  • If withdrawing (‘clucking’) try smoking or snorting a little heroin to settle you before having a hit. It’s easy to rush your preparation and injecting when withdrawing. If you don’t have any clean equipment, smoking or snorting some heroin can hold you until you get new works.
  • If possible, find a safe and warm place to prepare and inject your drugs. It’s harder to find a vein if you’re cold. If you are cold allow yourself a few minutes to warm up – jumping up and down can help!
  • Wash your hands before and after injecting, preferably using soap and water or if running water isn’t available, try baby wipes or alcohol gel.
  • If you need to use an acid (like citric) to prepare your drugs, use as little as possible. Using too much acid increases discomfort and damage to your veins.
  • After injecting, firmly apply a clean, dry swab or tissue to the injecting site for a few moments to stop bleeding and bruising. Don’t use alcohol swabs as this prevents blood clotting and encourages bleeding.
  • Immediately after use, dispose of needles and syringes in a Sharps Bin.

If you don’t have a Sharps Bin, hold on to your works until you can dispose of them safely. Or put the used works in an empty drinks can. Crush the can to prevent them being removed and put it in a rubbish bin. This is a safer way of disposing works than throwing them in the rubbish unprotected.

bin

  • If you’ve got a heroin habit consider getting a methadone or buprenorphine script from your doctor or drug service. This can help you manage your drug use, prevent withdrawal and help reduce any urgency around injecting.

Cleaning syringes

The best advice is to use a sterile needle and syringe for every injection. However, if you find yourself without clean injecting equipment, cleaning a used needle and syringe with bleach and water can reduce the risk of getting hep C, hep B, HIV and bacterial infections.

table

Tattoos and body piercing

If you get a tattoo or body piercing, you could be at risk of contracting hep C and other blood-borne viruses unless clean, sterile equipment is used every time.

To reduce this risk, don’t get tattoos or piercings in unlicensed premises (especially in private homes or prisons). When choosing a tattoo or body-piercing studio, look for clean, hygienic, well-lit premises and where they use new needles and inks each time. If they re-use needles, check that they are properly sterilised.

safe

Birth and breastfeeding

There is a small chance (around 5%) that hep C can be passed from mother to baby at birth (vertical transmission). Babies are often born with their mother’s hep C antibodies, but this does not mean they have active hep C. It is not until a baby is around 6 months old that a test will tell if they have hep C or not.

Breastfeeding is considered safe for women with hep C. However, if your nipples are cracked or bleeding you should stop breastfeeding temporarily (express and discard your milk during this time).

Sex

The risk of catching hep C through sex is low. Unlike HIV, hep C is not classed as a sexually transmitted infection. Hep C is not transmitted in semen or vaginal fluids, only through blood. When there is little risk of blood-to-blood contact during sex, there is usually no need to adopt safer sex practices.

Blood to blood contact during sex is more likely to happen if you are having rough sex, having sex for a long time, if you are living with HIV or have a sexually transmitted infection such as herpes, genital warts or syphilis. In these circumstances using condoms and dental dams can reduce risk.

Men who have sex with men seem to have a higher risk of catching hep C through sex. Adopting safer sex practices is recommended, especially if one of the partners is HIV positive.

sex

Preventing transmission around the home

The hep C virus is transmitted in blood. While there is a very low risk of transmission, care should be taken not to share your razors or toothbrushes as they could carry small amounts of blood.

contact

First aid precautions

The risk of getting hep C from cleaning up spilt blood is low. Healthcare professionals will use universal infection control procedures for all blood spills. To reduce any risk when cleaning up blood:

  • Wear disposable rubber gloves or cover any cuts, abrasions or skin rashes
  • Clean surfaces with detergent and water or mild bleach
  • Use disposable materials such as paper towels. Place them in a plastic bag and dispose in the rubbish after use.

Treating hep C

Hep C is treatable and curable.

Recent advances in hep C drug therapy have resulted in much better cure rates for most people. Treatment durations are becoming shorter with fewer side effects. Many people will be able to benefit from these new drugs in the future, but at the moment they are not widely available for all.

Choosing whether or not to start treatment is not always an easy decision. Factors to consider include: the treatments available; the health of your liver; how hep C currently affects your life; if you are pregnant or trying for a baby; how much support you have; and how any treatment side effects might impact your mood, work and relationships.

Hep C treatment is changing fast and even if you decide treatment isn’t right for you now, keep in contact with your doctor or nurse. This way they can monitor your health and liver function and let you know when new treatments become available.

To find out more talk to a doctor or nurse about treatment options, and whether it’s better for you to be treated now or to wait until newer drugs are available. People who have been through treatment themselves can provide support and guidance, as can support groups and hep C organisations (see resources section.

You can find out more about living with hepatitis C and treatment options in the second booklet in this series: Hep C Care.

booklet

Support & Resources

The Hepatitis C Trust

http://www.hepctrust.org.uk

Helpline: 0845 223 4424

Run by people with personal experience of hepatitis C, The Hepatitis C Trust runs a confidential helpline and provides information, support and representation for people with hep C. They also provide a directory of local hep C support groups and help for people wishing to start their own support group.

The British Liver Trust

http://www.britishlivertrust.org.uk

Working to reduce the impact of liver disease through awareness, care and research, the British Liver Trust has an extensive range of factsheets and information leaflets on a range of liver conditions including hep C and cirrhosis.

The NHS Constitution

http://www.nhs.uk

The NHS Constitution sets out your rights as a patient. It covers how patients access health services, the quality of care you’ll receive, the treatments and programmes available to you, confidentiality, information and your right to complain if things go wrong.

Harm Reduction Works

http://www.harmreductionworks.org.uk

A range of harm reduction materials and resources including information on HIV, hepatitis B & C, overdose prevention and safer injecting practice, aimed at drug users and drug service providers.

Injecting Advice

http://www.injectingadvice.com

Support and advice for people working in harm reduction services and for injecting drug users.

The International Network of People who Use Drugs (INPUD)

http://www.inpud.net

People who use drugs (current and former) working together to ensure that the human rights of people who use drugs are respected, and for the implementation of effective harm reduction measures.

PHE/RCGP Hepatitis C: Enhancing Prevention, Testing and Care

http://elearning.rcgp.org.uk/course/info.php?id=175&popup=0

This e-learning module provides an understanding of hepatitis C and its prevalence. It also gives an overview of the liver and its function, and the stages and natural history of untreated hepatitis C liver disease. The course was written for non-medical workers and also peers. You do not have to be a medical professional to register for access to the site.

Release

http://www.release.org.uk

Help and advice line: 020 7324 2989

Release provides a free confidential and non-judgmental national information and advice service in relation to drug use, drug laws and human rights. The telephone help and advice line is open from 11am to 1pm and 2pm to 4pm Monday to Friday. A message service is available 24 hours and you can also contact by email: ask@release.org.uk

Safer heroin injecting (YouTube)

http://www.youtube.com/watch?v=Miv8i-slK2w

A film designed to help people to identify ways to reduce potential injecting-related harms. The film is aimed at people who inject heroin, but many of the steps shown can be applied to the injection of other drugs.

FRANK

http://www.talktofrank.com

FRANK is a website and a confidential telephone helpline service offering drug related advice, information and support to users, their families, friends and carers. FRANK’s support section provides details of local and national drug and alcohol treatment services.

infohep

http://www.infohep.org

infohep is an online resource providing up to date hepatitis treatment news. Its aim is to increase awareness of viral hepatitis, its treatment, and the needs of people living with viral hepatitis in Europe.

Are you

AT RISK

of hepatitis C

Are you

LIVING WITH

hepatitis C

Living with hepatitis C and treatment options

Writers: Danny Morris and Magdalena Harris
Editor: Magdalena Harris
London School of Hygiene & Tropical Medicine, Harris and Morris © 2015

Thanks to all who helped in the development of this resource.

Particularly:

Members of the Hep C Resource focus groups
Participants of the London School of Hygiene & Tropical Medicine Hep C research projects
Martin McCusker and members of the Lambeth Service Users Forum
Andrew Preston, Exchange Supplies
Ashley Brown, Consultant Hepatologist at St. Mary’s and Hammersmith Hospitals
Janet Catt, Kath Oakes and Jo Schultz, Viral Hepatitis Clinical Nurse Specialists
Chris Ford, Clinical Director IDHDP
Emma Ward, Jim Conneely and Samantha May, The Hepatitis C Trust
Eliot Albers, INPUD
Emma Burke and Helen Harris, PHE
LJWG, Dovetail, Lumieres and Gilead Sciences

This booklet draws on work by Dr Magdalena Harris at The London School of Hygiene & Tropical Medicine.

Dr Harris is funded by a National Institute for Health Research postdoctoral fellowship [NIHR-PDF-2011-04-0311].

All quotes are genuine (all names have been changed) and are the result of Dr Harris’ interviews with service users and people living with hepatitis.

booklet-logos

This booklet has been developed through a joint working initiative between The London Joint Working Group on Substance Use and Hepatitis C (LJWG), Gilead Sciences Ltd, Addaction and Imperial College Healthcare NHS Trust.

Gilead Sciences had no influence over the content of this resource.

June 2015

HCV/UK/15-01/MM/1028

What is hep C?

Hepatitis means swelling (inflammation) of the liver, and it has many different causes. Hepatitis can be caused by liver toxic chemicals, heavy drinking (alcoholic hepatitis), some immune conditions or by one of a group of viruses, known as the hepatitis viruses, including hepatitis A, B, and C.

The hepatitis C virus (hep C) is carried in the blood, and affects the liver by preventing it from working properly, and causing the liver cells to die. Over time, the virus can cause inflammation, scarring (fibrosis) and, sometimes, significant damage to the liver (cirrhosis).

Cirrhosis increases the risk of developing liver cancer, which can be fatal.

Hep C is transmitted through blood. The use of unsterile injecting equipment is the main route of transmission in the UK. It is not considered a sexually transmitted condition (apart from when blood is involved) and cannot be passed on through kissing, hugging, sharing plates or utensils.

Hep C can be treated and, in most cases, it can be cured.

What are the symptoms of chronic hep C?

There are six basic types (strains) of the hep C virus.

These are called genotypes 1, 2, 3, 4, 5 or 6. Some genotypes have further variations called subtypes, for example 1a and 1b. Generally, all genotypes can affect the liver the same way. If you have hep C and are thinking about treatment, knowing your genotype is important, as different genotypes respond differently to treatments.

The progression of hep C

Acute stage

Acute hep C occurs after infection, and lasts for about six months.

  • Most people do not experience symptoms during the acute phase
  • Some people may have flu-like symptoms, including fever, tiredness, loss of appetite, stomach pains, nausea and vomiting and, occasionally, jaundice
  • Around 20 to 25% of people will clear hep C during the acute stage

Clearing the virus will not protect you against getting hep C again.

Chronic stage

  • The second stage is chronic (long-lasting) infection, where the virus remains in the body
  • The 75 to 80% of people who don’t clear the virus in the acute phase will develop chronic hep C
  • Symptoms of chronic hep C include: fatigue and low energy; depression; disrupted sleep; memory loss and difficulty concentrating (brain fog); sweats and chills; appetite loss and nausea; muscular aches and pains; abdominal pain; dry and itchy skin; blurred vision.

Having hep C doesn’t automatically mean you’ll experience symptoms or develop serious liver disease.

Hep C and liver damage

The longer you have lived with hep C, the more likely it is that you have some degree of liver damage. Liver damage is more likely if you are: male; over 40 when you contracted hep C; overweight; also living with HIV, hep B or diabetes; a regular or heavy alcohol user.

Liver disease can be advanced even if you don’t experience symptoms. For this reason, it is advisable to be tested and treated early, rather than waiting until symptoms develop.

Cirrhosis

Approximately one in five people with chronic hepatitis C will develop cirrhosis within 20 years. Liver cirrhosis is a slowly progressing condition in which the healthy liver tissue is replaced with scar tissue, eventually preventing the liver from functioning properly. The scar tissue blocks the flow of blood through the liver and slows the processing of nutrients, hormones, drugs and toxins.

Symptoms of cirrhosis

There are usually few symptoms in the early stages of cirrhosis. However, as your liver becomes more damaged and loses its ability to function properly, you might experience symptoms including:

  • Loss of energy, and feeling tired; feeling depressed; loss of appetite; feeling sick; weight loss or sudden weight gain; bruising easily; itchy skin; light coloured or dark, tarry-looking stools;

and if the liver damage becomes very serious it can cause:

  • Jaundice (yellowing of skin or whites of the eyes)
  • Build-up of fluid (oedema) leading to swelling of the abdomen, legs and ankles.
  • Abdominal pain, especially in the liver area and bloating (ascites)
  • Vomiting blood
  • Confusion, disorientation, and personality changes( encephalopathy)

If the damage continues, eventually the working parts of the liver can no longer support, or compensate for, the damaged parts. This is known as decompensated cirrhosis and can lead to serious and life-threatening complications.

Living well with hep C

Hep C is sometimes known as ‘the silent disease’ because its symptoms aren’t always obvious. Common symptoms, such as fatigue, nausea, brain fog and depression, can be easy to overlook or attribute to something else. Symptoms may begin months or years after getting hep C and can come and go.

Making lifestyle changes can reduce symptoms and slow down the development of liver disease. These changes may include reducing alcohol consumption, eating a healthy diet, drinking plenty of water, exercising, managing stress and getting enough rest.

It’s worth talking to your doctor and other people involved in your care to get advice about the things that can help you stay as healthy as possible and cope better with hep C.

Managing common hep C symptoms

Fatigue and sleep problems

Fatigue, an intense tiredness or lack of energy, is the most common hep C symptom.

Allow yourself to rest when you are able to. Eating small meals throughout the day, gentle exercise and drinking plenty of water can help maintain energy.

Hep C fatigue is not necessarily related to sleep problems, although people with hep C can also have trouble sleeping.

Sleep problems can be helped by:

  • Introducing some exercise into your day
  • Avoiding heavy exercise, meals, caffeine, alcohol or computer use close to bed time
  • Relaxation tapes, meditation or deep muscle relaxation
  • Talking to someone about, or writing down, any recurring thoughts or anxieties that might be disturbing your sleep

Fatigue and sleep problems can also be caused by stress, depression and a variety of health problems. If you are affected by lack of sleep for any length of time, tell your doctor.

Depression, irritability and anxiety

Hep C can cause or increase low mood, depression, irritability and anxiety. Understanding the connection between these feelings and your hep C can help, especially if you are able to get support from those close to you.

Consider talking to your doctor. They might advise a course of anti-depressants, talking therapy (such as CBT) or lifestyle changes, such as taking up exercise or relaxation techniques. Connecting with friends and/or support groups can also help.

Nausea and poor appetite

Hep C can cause episodes of nausea and indigestion which can affect your appetite. Try eating small meals often and avoiding fatty and highly processed foods. Ginger, peppermint, spearmint, fennel seed and aniseed teas can reduce nausea, bloating and abdominal cramps. Bitter foods (lemon and water, olives, rocket) taken before meals can aid digestion.

Brain fog and forgetfulness

Many people with hep C experience ‘brain fog’ where thinking clearly or concentrating can be difficult. Like other symptoms of hep C, brain fog can come and go. The exact cause of brain fog in people with hep C is poorly understood but complementary therapies like meditation, deep breathing exercises, and yoga can help ease symptoms. Practical tips include making lists of things you need to do and talking through important decisions with someone you trust. Many people find they are able to think more clearly after successful hep C treatment.

Abdominal pain

Hep C can cause liver discomfort. Soreness may be felt just below the ribs on the right hand side. Some people find heat packs helpful, especially at night. Over the counter pain relief (e.g. paracetamol) can help, but get medical advice from your doctor first.

Dry skin, rashes and itching

Skin rashes and complaints are fairly common and may come and go. Unperfumed soap and moisturisers can help to reduce skin dryness and soothe irritations, minor rashes and itching. Your pharmacist or doctor can provide advice on over-the-counter or prescription medicines (such as steroid creams) to manage skin complaints.

Some hep C symptoms (such as dry skin and nausea) are similar to hep C treatment side effects.

How will hep C impact my lifestyle?

Alcohol

Your chances of developing liver damage are higher if you have hep C and drink alcohol. Stopping drinking or drinking less can be the first step towards reducing your risk, although this isn’t easy for everyone.

If you have difficulty cutting down how much you drink, there are a variety of organisations that can help – see resources section or ask your doctor for support.

Diet

Most people with hep C don’t need a special diet. Eating a wide variety of food and having a balanced diet can help keep your liver healthy. Some people with hep C find they can’t eat fatty foods. It can also help to cut down on sugar, salt, fried and processed foods.

Ideally, avoid putting on too much weight. Being overweight is linked to type 2 diabetes, which is more common among people with hep C than the general population. Having both hep C and diabetes can increase the risk of serious liver disease.

Drugs

The liver breaks down the drugs we take. The amount of liver damage you have will affect how well your liver can process over-the-counter, prescribed and illicit drugs. Alcohol is the primary drug to avoid for anyone with liver disease. Tobacco smoking is associated with increased fibrosis and gum disease. Paracetamol is a recommended painkiller for people with hep C, but it is important not to take more than eight 500mg tablets a day.

There is not a lot of information about how street drugs (such as heroin, crack, ecstasy or speed) affect the liver. Heroin is not liver toxic, but the substances it is cut with might be. Generally stimulants are more likely to stress your immune system and impact your overall health.

Studies suggest that daily cannabis use increases liver damage. However, some people find that cannabis can be an alternative to alcohol and can help relieve some hep C symptoms and treatment side effects.

If you inject drugs take special care with your equipment. Hep C is easily spread by sharing works, filters and cookers. Booklet 1 and the At Risk section of this site have more information on staying safe when injecting and preventing transmission of hep C, other blood-borne viruses and bacterial infections.

Complementary and alternative medicines

Some people find that complementary or alternative medicines (CAM), such as herbs, massage, aromatherapy, reflexology, t’ai chi, meditation and acupuncture, can help relieve stress and eases some hep C symptoms. They cannot clear the virus.

Some alternative medications (such as herbal preparations) can be liver toxic or react with prescribed medicines – ask your doctor for advice, especially if you are considering hep C treatment.

Stress and exercise

The stress of living with a chronic illness like hep C can affect your overall health. Techniques to reduce stress include: having a bath, massage, yoga or meditating. Taking up new interests or challenges, exercise and meeting with friends can also help.

Being active can improve overall health and has both physical and mental benefits. There are many ways to increase activity. Your choice will depend on what you enjoy, how fit you are and how your body reacts to exercise.

As well as helping you feel better, being active can keep your weight in check and help with other hep C symptoms, including sleep problems, joint pain and fatigue.

Sex

People with hep C can be unnecessarily afraid of passing it on to their lovers. Some describe feeling isolated because of this fear.

The risk of catching hep C through sex is generally very low. Unlike HIV, hep C is not classed as a sexually transmitted infection.

Hep C is not transmitted in semen or vaginal fluids, only through blood. When there is little risk of blood-to-blood contact during sex, there is usually no need to adopt safer sex practices.

Blood to blood contact during sex is more likely to happen if you are having rough sex, having sex for a long time, if you are living with HIV or have an STI such as herpes, genital warts or syphilis. In these circumstances using condoms and dental dams can reduce risk.

Men who have sex with men do seem to be at more risk of catching hep C through sex. Adopting safer sex practices is recommended especially if one of the partners is HIV positive.

Some people find that hep C reduces their sex drive. It can help to talk about this with partners, to reduce any potential strain on a relationship.

Treating hep C

Hep C is treatable and curable.

Choosing whether or not to start treatment is not always an easy decision. There are many factors to consider, including how you’re feeling right now, the treatments available and how any side effects might affect day-to-day living, relationships or work.

Recent drug developments have resulted in shorter, better tolerated and more effective treatments, although these are not widely available for all. Generally speaking, if your liver is in good health you can afford to wait, but if you have advanced fibrosis having treatment sooner will be the better option.

Your doctor or nurse can guide you about your treatment options, and whether it’s better for you to be treated now or to wait until newer drugs are available. People who have been through treatment themselves can provide support and guidance, as can support groups and helplines (see resources section).

Your rights to treatment and care

Everyone has a right to see a specialist to discuss hep C treatment options. If you would like a referral, but have not been offered one, ask a healthcare professional, such as a drug treatment nurse, GUM doctor or your GP.

If you do not have a GP or still have problems obtaining a referral or assessment, organisations such as the Hepatitis C Trust (see resources section) can provide advice.

GP Care

You don’t need to be registered with a GP to get treatment, but they can be a good source of support. Under the NHS Constitution (see resources section) you have the right to register with a GP practice near where you live, even if you originally come from abroad.

You are entitled to register with a doctor if you are homeless. You can use a temporary address, such as a friend’s place or a day centre.

If you’re not registered with a GP or you want to change the one you have, visit the GP surgery you want to join and ask them to register you as a patient. You will need to fill in a form and provide proof of who you are and where you live. GPs who work in partnership with drug treatment services often have more knowledge about hep C and can be a good choice if you want a new doctor.

What if I’m using drugs?

Everyone with hep C is entitled to hep C treatment assessment, including people who are currently using illicit drugs.

National (NICE) and European (EASL) hep C treatment guidelines make it clear that people who inject drugs are eligible for hep C treatment:

[Hep C] treatment must be considered for people who inject drugs, provided they wish to receive treatment and are able and willing to maintain regular appointments.

(EASL hepatitis C treatment guidelines 2014)

If you are refused treatment on the grounds of illicit drug use alone, you have the right to be referred to another hospital for your care.

Hep C treatment is generally provided in specialist hospital settings. In some areas, hep C treatment can also be accessed at drug treatment services, or through shared care with your GP.

Some services offer multi- disciplinary support throughout hep C treatment. This care is usually coordinated by a dedicated nurse and can include input from drug and alcohol services, psychiatric services, social work and other social care services, including peer support.

Methadone and buprenorphine

Hep C is very common among people on opioid substitution treatment (OST), such as methadone or buprenorphine. OST should not be a barrier to hep C treatment, and some people find that increasing doses of methadone or buprenorphine can help them manage side effects.

It is generally not recommended to reduce OST while on hep C treatment.

Co-infection

If you have hep C and another infection such as HIV or hep B, your liver disease is likely to progress faster. However, if you do have HIV or hep B your hep C can still be effectively treated.

Having hep C can impact on your HIV treatment choices, as some HIV treatments are more toxic to the liver than others. In this case your specialist HIV doctor can advise you on the best treatment options.

A hep B vaccination is recommended for anyone living with hep C.

Pregnancy and contraception

Ribavirin can cause birth abnormalities and it is important to avoid pregnancy and breastfeeding while on hep C treatment and for 4 to 6 months after treatment ends. Women of childbearing age and also their partners will be advised to use effective contraception when either partner is on treatment. If you are considering starting a family, discuss this with your nurse or doctor when considering your treatment options. You may decide to have treatment before getting pregnant to avoid the small chance of passing hep C on to your baby (around 5%).

What is hepatitis C treatment?

Hep C treatment is a rapidly evolving field. Speak to your treatment doctor or nurse to find out what treatments are available and advised for you.

Until recently, standard treatment has consisted of two antiviral drugs: a weekly injection of pegylated interferon plus ribavirin tablets twice daily for 24 to 48 weeks. Both drugs commonly cause side effects. Treatment success rates vary depending on the genotype of the virus (around 50% cure for people with genotype 1 and 70 to 80% for people with genotypes 2 and 3).

A growing understanding of how the hep C virus works has led to the development of a new class of drugs for treating hep C.

These first generation direct acting antiviral (DAA) drugs became available in 2011. When used with ribavirin and interferon as triple therapy, this combination has improved cure rates for people with genotype 1. However, these drugs are also associated with side effects, including rash and anaemia.

More recently a range of second generation direct acting antivirals have been developed. Where available, these new therapies offer shorter treatments with fewer side effects and higher cure rates (around 90%). These newer DAAs do not have to be used with interferon and are more suitable and safer for people with cirrhosis or advanced liver disease than earlier treatment options.

Hep C treatment is changing fast and even if you decide treatment isn’t right for you now, stay in contact with your doctor or nurse. This way they can monitor your liver health and let you know when new treatment options become available.

What are the side effects of treatment?

Interferon and ribavirin treatment, with or without a DAA, often involves side effects. The most common are flu-like symptoms such as: chills, fever, headaches, fatigue, muscle pains and loss of appetite. Other common side effects include: anaemia, depression, mood swings, sleep- disturbance, skin irritation/ rash, dry/sensitive eyes and brain fog.

Management of side effects has improved over the years and with the right help most people who start treatment now complete it.

When side effects occur, tell your treating doctor or nurse. They can help you manage and reduce side effects. This might involve an adjustment of the combination medication dosage or taking additional medications.

Managing common side effects

Below are some tips to help manage common side effects of treatment containing interferon and ribavirin. If you do experience any side effects or distressing symptoms on treatment, let your doctor know.

table

Pros and cons of treatment

The main benefit of treatment is that it’s the only proven way of clearing chronic hep C.

Many people who clear hep C notice their energy return and their quality of life improve significantly.

Even if treatment is not successful, it can improve liver health by reducing inflammation.

Knowing that you’ve given it a go can boost self-confidence and put you in touch with professionals for ongoing liver monitoring and updates on treatment options.

There may be good reasons for putting off treatment, such as if you are pregnant or trying for a family, have severe depression, or simply that it is not the right time for you.

Interferon and ribavirin based treatment is associated with side effects. Not everyone has them, they are temporary and manageable, but it is possible that you will feel unwell some of the time. It can take a few months after the treatment ends before the drugs are cleared from your system. Some people experience ongoing side effects after treatment.

Treatment and side effects can temporarily impact your relationships, work and social life, but this impact will become less in the future, as new drugs with fewer side effects become available.

Is it the right time for me to have hep C treatment?

This simple exercise can help you decide if it is the right time to start hep C treatment. List the reasons why you want to get treated (pros) and the reasons why you’re uncertain (cons).

Then look at how important each one is to you. Comparing the pros and cons can help you decide on your next steps. You might find that your motivations change over time as your situation changes or as new treatments become available.

Example pros or motivations for treatment:

  • I might get rid of the hep C
  • It is a chance of feeling better for the long term
  • I might stop feeling so exhausted and irritable
  • I can get rid of this brain fog
  • I can improve my liver health
  • I can drink alcohol again
  • I won’t need to worry about passing on hep C to someone else
  • I want to get rid of hep C so I can get pregnant
  • I won’t have to worry about whether to tell people I have hep C any more
  • I can live free from fear of serious liver disease or liver cancer.

Examples of treatment concerns:

  • The treatment might not work
  • I might have to take time off work
  • I don’t want to tell my partner /friends /children
  • I might not cope well with the side effects
  • There is too much going on in my life at the moment
  • I might not be able to care for my kids
  • I don’t want anyone to know I have hep C or am going through treatment
  • I don’t have enough support
  • I don’t have a stable place to live
  • I hate hospitals!

Tests before and during treatment

Before starting treatment, you will usually need more tests to help you and your doctor decide the best treatment option for you. As well as discussions about your lifestyle, other medical conditions and medicines you might be taking, your assessment can include tests for liver damage. Knowing how much scarring or cirrhosis you have can determine the type and length of your treatment.

Tests include:

  • Blood tests such as liver function tests (LFT)
  • A genotype and viral load test Ultrasound scan, or fibroscan
  • Liver biopsy is no longer necessary for everyone. It is often reserved for cases where the results from the ultrasound or fibroscan are not clear.

Once you start treatment the levels of the hep C virus in your blood (viral load) will be monitored.

The results of these tests include:

  • Rapid Viral Response: viral clearance at week 4 of treatment. This means your chances of treatment success are very high.
  • Early Viral Response: viral clearance or significant drop at week 12 of treatment
  • Non-Response: no significant drop in viral load at 12 weeks of treatment. This means the treatment is unlikely to work.
  • Sustained Viral Response: viral clearance (a negative PCR result) 24 weeks after treatment finishes. This means the hep C is cured and is very unlikely to return. In newer treatment regimens the SVR can be determined at 12 weeks post treatment.

Depending on your treatment regimen you will also be monitored for changes in your haemoglobin (red blood cells, affecting anaemia), neutrophils (white blood cells, affecting immunity) and other blood markers throughout treatment.

After successful treatment you will continue to have antibodies in your blood, showing that you have been exposed to the virus in the past. This does not mean you have active hep C, but also does not mean you are immune from catching it again.

Managing appointments and medication

You have the right to take someone with you to any hospital appointment or hep C assessment. Many people find it helpful to have a friend or family member there for support and to talk through the options, especially in the early days when there is a lot to take in.

Hep C might affect your memory. Having ‘brain fog’ can make remembering appointment and medication schedules difficult.

Tips for helping to remember medication & appointments

It is important to take hep C medication as prescribed. If you skip doses or stop treatment, you run the risk of not clearing the virus.

Tips for helping to remember medication and appointment times include:

  • Daily pill containers
  • A calendar or electronic organiser to note appointments and medication times
  • Medication reminder apps – there are many available to download
  • Phone or clock alarms
  • Organise text or phone appointment alerts through your doctor.
  • Post-it notes to remind yourself of appointments and medication schedules
  • Create habits and daily routines
  • Ask house mates, friends or family to remind you

Treatment support

Before you start treatment it is advisable to have a discussion with your doctor or nurse to plan the support you need, based on your individual circumstances and needs. Ideally you should be given advice on managing side effects, and on alcohol and drug use (prescribed and illicit) during treatment.

If this doesn’t happen or you feel you need more information, see resources page for more support options. Writing down questions to ask your doctor or nurse at your next appointment is also a good strategy (spaces on next pages).

As well as healthcare professionals, partners, family and friends all play an important role in providing emotional and practical support when you are on treatment.

If you’re feeling unwell, or need to get to a hospital appointment, practical help with household tasks or childcare can make a big difference.

Peer support, local groups and online forums are a useful resource if you are finding it hard to manage or want to talk about your treatment options. (You can find information on hep C support groups and on-line forums in the resource section)

Questions for your medical provider

Below and over the page are spaces for you to jot down any questions you have about hep C treatment or living with hep C for your medical provider. It can help to take this booklet to appointments with you so you have these questions to hand.

If you don’t get the information you require or don’t yet have a doctor there are a number of other options for information provision in the next section.

Support and resources

The Hepatitis C Trust

http://www.hepctrust.org.uk

Helpline: 0845 223 4424

Run by people with personal experience of hepatitis C, The Hepatitis C Trust runs a confidential helpline and provides information, support and representation for people with hep C, including accessing treatment. They also provide a directory of local hep C support groups and help for people wishing to start their own support group.

The British Liver Trust

http://www.britishlivertrust.org.uk

Working to reduce the impact of liver disease through awareness, care and research, the British Liver Trust has an extensive range of factsheets and information leaflets on a range of liver conditions including hep C and cirrhosis.

European Association for The Study of the Liver (EASL)

http://www.easl.eu/_clinical-practice-guideline

Clinical Practice Guidelines: Recommendations on Treatment of Hepatitis C 2014 define the current best practice for the diagnosis, treatment, management and prevention of hep C.

infohep

http://www.infohep.org

infohep is an online resource providing up to date hepatitis treatment news. Its aim is to increase awareness of viral hepatitis, its treatment, and the needs of people living with viral hepatitis in Europe.

Harm Reduction Works

http://www.harmreductionworks.org.uk

A range of harm reduction materials and resources including information on HIV, hepatitis B & C, overdose prevention and safer injecting practice, aimed at drug users and drug service providers.

PHE/RCGP Hepatitis C: Enhancing Prevention, Testing and Care

http://elearning.rcgp.org.uk/course/info.php?id=175&popup=0

This e-learning module provides an understanding of hepatitis C and its prevalence. It also gives an overview of the liver and its function, and the stages and natural history of untreated hepatitis C liver disease. The course was written for non-medical workers and also peers. You do not have to be a medical professional to register for access to the site.

FRANK

http://www.talktofrank.com

FRANK is a website and a confidential telephone helpline service offering drug related advice, information and support to users, their families, friends and carers. FRANK’s support section provides details of local and national drug and alcohol treatment services.

The International Network of People who Use Drugs (INPUD)

http://www.inpud.net

People who use drugs (current and former) working together to ensure that the human rights of people who use drugs are respected, and for the implementation of effective harm reduction measures.

Release

http://www.release.org.uk

Help and advice line: 020 7324 2989 Release provides a free confidential and non-judgmental national information and advice service in relation to drug use, drug laws and human rights. The telephone help and advice line is open from 11am to 1pm and 2pm to 4pm Monday to Friday. A message service is available 24 hours and you can also contact by email: ask@release.org.uk

NHS Choices

http://www.nhs.uk

A comprehensive health information service with resources written by patients, carers and clinicians.

NHS Constitution

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/ Pages/Overview.aspx

The NHS Constitution sets out your rights as a patient, including how you access health services, the quality of care you should receive, the treatments and programmes available to you, confidentiality, information and your right to complain if things go wrong.

Citizens Advice Bureau: Advice Guide

http://www.adviceguide.org.uk

The main public information service of Citizens Advice, providing information on your rights, including benefits, housing and employment, and on debt, consumer and legal issues.