Committed To Cure - Support a future free from Hep C

Diagnosis

When symptoms develop, usually once the liver has already been damaged, they can be mistaken for another condition. Flu-like symptoms (high temperature, muscle pain), tiredness, vomiting and stomach pain indicate acute hepatitis C, while tiredness are the main symptoms of chronic hepatitis C and this has a significant impact on quality of life.1

Hepatitis C is diagnosed by two standard blood tests. The first one screens for hepatitis C virus antibodies (proteins produced by the immune system as a reaction to the viral infection) in the blood. The second blood test, an RNA test, checks whether or not there is an active hepatitis C infection.1, 2

FAQ Section

How will hepatitis C impact my liver?

How hepatitis C impacts your liver will depend on when the diagnosis is made and whether the infection is acute or chronic. The long-term effect of hepatitis C on your liver can range from slight changes to the liver cells to extensive fibrosis and cirrhosis (scarring) with possible progression to liver cancer.2, 3

Can I die from hepatitis C?

If a hepatitis C infection is left untreated this could lead to serious and potentially life-threatening conditions of the liver over many years. You could develop liver failure, cirrhosis, decompensated liver disease, cancer, or other fatal liver complications.3

Does hepatitis C affect other parts of my body?

Clinical trials have shown that hepatitis C infection can affect a person’s verbal learning and reasoning as well as their mental flexibility both in patients who are drug users and those who have never experienced drug abuse. Hepatitis C virus could also affect several other organs and promote the occurrence of extra-hepatic diseases such as lymphoma, cutaneous and renal disturbances.2, 4

Can hepatitis C be cured?

The main goal when treating hepatitis C is to cure the infection. This means achieving a sustained virological response (SVR), defined as undetectable hepatitis C virus 12 weeks (SVR12) or 24 weeks (SVR24) after completing treatment. When an SVR is achieved there is a 99% chance that the hepatitis C infection is cured.2

Hepatitis C can be treated for several months with a combination of medicines that stop the virus multiplying inside the body. Newer hepatitis C medications have proven to be more effective than older drugs. Up to 90% of people with hepatitis C can be cured by the newest treatments.1

Do I need to tell people that I have hepatitis C?

It is your choice who you decide to tell that you have hepatitis C. The healthcare professionals involved in your tests and treatment will know your status, and they are bound by confidentiality laws to not reveal this to anyone else apart from other healthcare professionals who are involved in your care.5

You are not obliged to tell your employer about your hepatitis C status, unless you are a healthcare professional. However, you may prefer to inform your manager if you feel that your condition will affect your performance or your attendance at work, and then special allowances can be made for you. You may have to disclose your condition to your insurance provider if you have any insurance.5

Other people that you may wish to tell would be those with whom you can share the burden and obtain support – perhaps a close friend or a family member.5

I am pregnant. Will hepatitis C spread to my baby?

There is a 1 in 20 chance of hepatitis C being passed to the unborn baby, and the risk is higher with untreated HIV coinfection. To date, there is no way to prevent the spread of hepatitis C to the baby.6

Standard treatment for hepatitis C would not be safe to use as the medicines could have harmful effects on your baby.1

It is not known for certain whether you can pass hepatitis C to the baby through breast milk. If you are infected, seek advice about breastfeeding from your healthcare professional.6

Will hepatitis C affect my fertility and can I start a family?

There is no evidence documenting female fertility during a hepatitis C infection, however, male sperm count may be slightly lower than normal during hepatitis C virus infection.7

For further advice ask your healthcare professional about the options available. If you become pregnant while you have a hepatitis C infection you should consult your doctor about managing your pregnancy safely.1

Starting treatment

If a person has an active hepatitis C viral infection, they will be referred to a specialist for further tests.1, 2

These tests may include:
  • Blood tests – these measure certain enzymes like alanine transaminases (ALT) and proteins like bilirubin or albumin in the bloodstream that indicate whether the liver is inflamed or damaged.
  • Ultrasound scans – where sound waves are used to check for the texture and size of the liver. A specialised test for measuring the stiffness of the liver is the elastography (e.g. Fibroscan) in which an increase in stiffness would suggest that the liver is scarred.
  • Liver biopsy – performed to identify the amount of liver inflammation and liver fibrosis, i.e. scarring, though this is not necessarily a routine procedure in hepatitis C infections, and has been substituted by less invasive methods like elastography.

These tests will determine which treatment will work best when treating the infection.

Your healthcare professional will then discuss with you what treatments may be indicated depending on your needs.

FAQ Section

Which treatment will I get?

The treatment you receive will depend on whether the hepatitis C infection is acute or chronic, the subtype or strain of the virus, and the degree of liver disease. If the infection is diagnosed at an early stage, during an acute infection you may not start treatment immediately. Your body will be given the chance to fight off the virus first, and you will have a blood test a few months later to confirm whether or not the virus is present. If the infection has not gone then your doctor will prescribe treatment to deal with the chronic infection.1

Once you are diagnosed with hepatitis C a liver specialist can give you information about the risks and benefits of the different treatments. As treatment lasts for up to 24 weeks, with interferon-based treatments lasting up to 48 weeks and producing side effects, it is important to select the right combination of medications for you. Newer drugs have a more favourable tolerability profile than interferon-based treatments.1, 2

Furthermore, different treatments are not advised in certain patients, so your healthcare professional will need to check your medical history in order to establish the best treatment plan.2

During your treatment you will take blood tests in order to check that your medication is working. If the treatment is not working your healthcare professional will switch you to a different one.1

Your healthcare professional will also encourage you to make lifestyle changes to help prevent further damage to your liver and reduce the risk of spreading the infection.1

Why is it important to be treated early?

The goal of therapy is to cure the hepatitis C infection in order to prevent liver complications, including cirrhosis and cancer.2

It is important to treat hepatitis C early in order to limit the progression of liver disease and help prevent the spread of the infection to others.1

What are the side-effects and how do I handle them?

Side effects vary depending on the treatment regimen chosen. Newer medications have a more favourable tolerability profile than interferon-based treatments. However, reported side effects with newer medications and their combination treatments include fatigue, headache, nausea, rash and insomnia.2

In the case of interferon-based treatments reported side effects are more frequent than newer drugs and included headache, tiredness, fever, anaemia, constipation, diarrhoea, and loss of appetite.1, 2

These treatments can also interact with other medications you are taking, and lead to side effects. Let your healthcare professional know what other medicines you are taking before you start your treatment.1

Usually, side effects lessen over time as your body becomes used to the medication. However, if these persist and if they are affecting you significantly then tell your healthcare professional.1

You should continue to take your medicine as directed, and do not stop taking your treatment without checking with your healthcare professional. Missing doses will reduce the effectiveness of your treatment and will affect the chances of your infection being cured.1

How long will it be before I am treated?

When you receive treatment depends on the severity of the infection and the healthcare policy in your country. Patients are given priority if they have significant fibrosis or cirrhosis. In addition, patients with HIV or hepatitis B co-infection are also treated as soon as possible, as well as those who have had liver transplants, debilitating fatigue and those at risk of transmitting the hepatitis C virus.1

Patients with no liver disease or mild disease can have their treatment deferred for a few months.1

Cure

After completing treatment, there is a period when the hepatitis C viral load in the blood is undetectable. If this period lasts for 12 consecutive weeks after treatment has been stopped, it is called a sustained virological response (SVR12).2

Many doctors who have had experience with testing the new all-oral treatments in clinical trials generally consider their patients cured if they have achieved SVR12.2

FAQ section

Now I am cured, what are the chances of a reinfection?

When treated with the newer medicines, up to 90% or more of people with hepatitis C may be cured. However, you won't be completely immune from getting another infection. You should therefore make lifestyle measures to reduce your risk of having another infection.1

My treatment was unsuccessful, what other treatments am I eligible for?

If treatment does not work, it may be repeated, extended or a different combination of medicines may be prescribed.1

The alternative treatment would depend on the strain of the hepatitis C that you have, as well as whether or not you have a coinfection with HIV, and whether or not cirrhosis or fibrosis of the liver is present.1

What is the likelihood of success, following additional treatment?

he effectiveness of treatment for hepatitis C can depend on the strain of the virus you have. Certain strains of hepatitis C are more difficult to treat than others, and until recently less than half of those treated would be cured.3

However, with the newer medications, the chances of a cure can be much higher. Combinations of tablets can now have a cure rate of more than 90%.1, 13

If the virus is successfully cleared with treatment, it is important to know that you are not immune to getting another hepatitis C infection.1

Life after cure

Achieving a cure removes the feeling of being limited by the disease.

There is also the sense that being free from hepatitis C virus means being able to go back to life before contracting hepatitis C such as:
  • Participating in activities (physical, mental, or social) which were not possible when you had the infection.1
  • Having intimate relationships again without risk of infecting loved ones
  • Feeling emotional relief from the stigma around the condition

FAQ section

What lifestyle/diet modifications should I make to take care of my liver?
In general, it is best to aim for as near to your usual lifestyle as possible. However, there are some things you can do to maintain a healthy lifestyle to slow down the progression of any scarring or reduce the chance of the infection coming back:9
  • Take exercise and get enough rest
  • Maintain a high level of hygiene
  • Avoid alcohol intake

Before taking over-the-counter medications check with your healthcare professional that these are safe to use and will not interact with your treatment or make your cirrhosis worse.9

Take precautions against catching colds and other infectious diseases.9

Talk to healthcare professional about having a flu vaccination during the winter months.9

Eat a balanced diet that provides a good source of vitamins and minerals, though avoid salty foods or adding salt to your food to control fluid retention.9

Cirrhosis can affect your ability to store glycogen (excess energy from glucose intake) in the liver. This means that your body has to use its own muscle tissue and this can lead to muscle wasting and weakness.9

You can reduce this effect by eating snacks between meals to top up calories and protein. You can also eat three or four small meals in a day instead of one large protein or carbohydrate meal. It is best to obtain further advice from your healthcare professional.9

Do I need to disclose that I have had hepatitis C?

Your doctor cannot disclose your condition to anyone as they are bound by confidentiality laws. The only people they can notify about your status without your permission are other healthcare workers who may be involved in your follow-up.5

If you have any insurance that is renewed on an annual basis, such as private medical insurance, then you may need to tell the insurer.5

Can I give blood after I have been cured?

If you have ever had the hepatitis C virus, experts recommend that you never donate blood.1

How can I continue to find support now that I am cured?
As well as finding support and information resources on the Committed to Cure website there are a number organisations and patient groups which provide support and information on hepatitis C:
  • British Liver Trust
  • Hepatitis C Trust
  • Hep C Positive
  • Hep C Nomads
  • Liver4Life
  • European Liver Patients Association
  • Federation SOS Hepatites (France)
  • Hepatites (France)
  • Hepatoweb (France)
  • Hepatitis-c.de (Germany)
  • Leberhilfe.org (Germany)
  • Nationaal Hepatitis Centrum (Netherlands)
  • FNETH: Federación Nacional de Enfermos y Trasplantados Hepáticos (Spain)

References

  1. NHS Choices. Hepatitis C. Available at: http://www.nhs.uk/Conditions/Hepatitis-C/Pages/Introduction.aspx Last accessed 7 March 2016.
  2. European Association for the Study of the Liver. EASL Recommendations on Treatment of Hepatitis C 2015. J Hepatol. 2015;63:199–236.
  3. Ansaldi F, et al. Hepatitis C virus in the new era: perspectives in epidemiology, prevention, diagnostics and predictors of response to therapy. World J Gastroenterol. 2014;20(29):9633–52.
  4. Huckans M, et al. The cognitive effects of hepatitis C in the presence and absence of a history of substance use disorder. JINS. 2009;15(1):69–82.
  5. The Hepatitis C Trust. Telling People. Available at: http://www.hepctrust.org.uk/telling-people. Last accessed 7 March 2016.
  6. Canadian Paediatric Society. Hepatitis C in Pregnancy. Paediatr Child Health. 2008;13(6) July/August.
  7. Hofny ER, et al. Semen and hormonal parameters in men with chronic hepatitis C infection. Fertil Steril. 2011;95(8):2557–9.
  8. American Liver Foundation. Taking your medications. Available at: http://hepc.liverfoundation.org/treatment/while-on-treatment/taking-your-medications/. Last accessed 7 March 2016.
  9. British Liver Trust. Cirrhosis. Available at: http://www.britishlivertrust.org.uk/liver-information/liver-conditions/cirrhosis/. Last accessed 7 March 2016.
  10. Horiguchi N, et al. Liver regeneration is suppressed in alcoholic cirrhosis: Correlation with decreased STAT3 activation. Alcohol. 2007;41(4):271–280.
  11. European Medicines Agency (EMA). Rebetol® Summary of Product Characteristics. 2015. Available at: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/000246/WC500048210.pdf. Last accessed 16 March 2016.
  12. Terrault NA, et al. Sexual transmission of hepatitis C virus among monogamous heterosexual couples: the HCV partners study. Hepatology. 2013;57(3):881–9.
  13. McConachie SM, et al. New direct-acting antivirals in hepatitis C therapy: a review of sofosbuvir, ledipasvir, daclatasvir, simeprevir, paritaprevir, ombitasvir and dasabuvir. Expert Rev Clin Pharmacol. 2016;9(2):287–302.

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