HIV & HEP C Coinfection - A Guide
The liver, hepatitis and viruses
Hepatitis means inflammation of the liver, a condition where the liver gets hot, swollen, red and painful. Many different things (alcohol, drugs, viruses, bacteria, poisons) can cause inflammation of the liver.
The liver is part of the digestive system. An adult’s liver is about the size of a football and is located behind and slightly below the right side of the rib cage. Millions of liver cells do the essential work of filtering poisons (including drugs and alcohol) from the bloodstream and changing the foods we eat and drink into chemicals that the body can use for energy, maintenance and growth.
A virus is a microscopic parasite. 5 different viruses can invade and reproduce inside the liver, causing hepatitis. The different viruses that inflame the liver are called Hepatitis A, Hepatitis B, Hepatitis C, Hepatitis D, Hepatitis E and Hepatitis G. All 5 hepatitis viruses infect the liver, but all are completely different from each other in terms of how each virus is spread and the long-term effects for the person who is infected.
Hepatitis C is one virus that reproduces itself inside the liver cells of infected people. If the virus infection is long term the ongoing inflammation of liver cells can cause permanent damage to the liver.
In the liver of the person who has Hepatitis C, the virus is multiplying and damaging the cells, meanwhile the body is constantly repairing itself with new cells. Chronic Hepatitis C is like a marathon race between the Hepatitis C virus and the liver, with the immune system always trying to stop the virus.
You can assist your liver to win this race by treating your body well with good low fat diet, lots of fruit and veggies, little or no alcohol and a balanced combination of exercise, rest and relaxation. Getting vaccinated against Hepatitis A and B will also be useful (because it protects your liver from other invaders).
There is also the option of Interferon based treatment which aims to clear Hepatitis C out of the body altogether. (See information on treatments).
None of these are measures guaranteed to stop the progress of Hepatitis C liver damage, but for co-infected people all are worth a try.
What does Hepatitis C do to people who are co-infected with HIV?
If Hepatitis C reproduction continues unhindered, causing continual liver inflammation the outcomes are serious. Fibrosis is the scar tissue that forms in the liver after it has been inflamed for a while. Cirrhosis occurs when the liver has been inflamed and has been forming scar fibrosis for a long time. At this stage the liver cannot filter the blood due to loss of liver cells and scarring that blocks the flow of blood between the cells.
Cancer is the end product of years of inflammation, fibrosis and cirrhosis. Surgery to remove tumours does not extend life for long.
What happens if a HIV positive person also has Hepatitis C?
HIV causes immune suppression, this allows Hepatitis C to reproduce rapidly, increasing the rate of damage to the liver. Destruction of liver cells is indicated by abnormally high levels of ALT (Amino Alaninetransferase ) in the blood (revealed on Liver Function Tests). Some destruction (and replacement ) of liver cells is normal, but raised ALT levels indicate that more than the usual numbers of cells are being destroyed. The destruction of liver cells may (or may not) be caused by Hepatitis C; Other things like drinking too much alcohol can also destroy liver cells (and even too much coffee or stress can cause raised ALT levels, so can strong medicines such as anti-retroviral medicine for HIV).
But even if ALT levels seem to be continuously high, this does not measure the level of permanent damage that has been done by inflammation. It also important to know that once the liver is severely scarred (cirrhosis) ALT levels can read 'normal' even though the liver is quite damaged. People can feel very sick or fatigued with Hepatitis C but their ALT levels read 'normal'; this is quite common and reflects on the shortcomings of ALT readings as a precise diagnostic tool.
Some broken liver cells would have been replaced by perfect new liver cells, others replaced by scar tissue which eventually accumulates causing blockages between liver cells and the bloodstream. Only a liver biopsy (where a tiny piece of liver is pinched off by a needle) viewed under a microscope can show exactly how much damage (fibrosis) has accumulated. Liver biopsy results are graded on a scale of 0-4. 0= no damage 1=mild fibrosis (scarring) 2=medium fibrosis 3=bridging fibrosis 4=cirrhosis fibrosis. Cirrhosis is a serious illness. At that stage the liver is struggling to perform any of its vital functions.
One of the liver’s functions is to process medicines. People who are HIV positive may require combinations of Antiretroviral drugs to keep the HIV load down allowing their CD4 count to stay high. All medicines are processed by the liver in order to have the required effect in the body. Some antiretroviral drugs are especially difficult for the liver to process. If the liver is damaged its capacity to process drugs is also damaged. A scarred liver is severely impaired and that liver may not process medicine properly (thus preventing the body from getting the full benefit of the drug). The liver may even be poisoned by a medicine that would not be poisonous to a healthy liver.
Why look after my liver when I have HIV anyway?
People who are co-infected with Hepatitis C and HIV need to keep their liver intact so that their liver will be able to process any Antiretroviral drugs that can fight HIV to keep the immune system intact. Where possible, co-infected people may wish to take the chance (through Interferon based Treatments) to eradicate Hepatitis C from their system. There is no way to cure HIV, but there is a chance of getting rid of Hepatitis C.
Hepatitis C Helpline 1800 703 023 recommends that you consult with a doctor who is expert in co-infection and ask if there is any good reason why you should not be prescribed combination Pegylated Interferon with Ribavirin. If there is good reason (perhaps a heart condition or potential for bad interaction with your HIV drugs) then ask for the next most effective treatment.
Pegylated Interferon & Ribivarin
This medicinal drug treatment involves shallow injections (Interferon) once a week, as well as tablets (Ribivarin) for period of six months or a year. The success of any treatment is usually measured by the evidence of no Hepatitis C virus detectable in blood at the end of treatment and then 6 months later.
Interferon based treatments are often associated with serious side effects; up to 15% of people who commence these treatments stop taking them because of side effects. Some people experience few or no side effects. Because of the potential for severe depression, anxiety and mood swings, good clinics are ensuring that clients are not depressed before commencing treatment and monitoring patients carefully throughout the treatment.
It is highly recommended that people undergoing Interferon treatments have supports in place such as close and expert monitoring of depression, anxiety and irritability; access to good counseling and support groups for the person undergoing the treatment and also those who live with them.
Side effects of Interferon based treatment may include:
- 'flu like' symptoms (fevers/chills,muscle aches, joint aches, fatigue);
- nausea and/or vomiting;
- hair loss;
- depression, anxiety, mood swings;
- thyroid disorders;
- blood disorders including serious anaemia;
- heart complications related to serious anaemia.
NB: It is strongly recommended that clients (male and female) do not attempt pregnancy while on Rebetron or for 6 months afterwards because birth defects are likely to occur.
Interferon is a neurotoxic drug; that means it is irritating of the brain. Depression, anxiety and irritability can be very serious side effects. Remember if you are freaking out on Interferon it is not you it is the drug- call the clinic or your counselor and get help immediately. If you are watching your partner freak out on interferon – get help. Side effects can be managed, but don’t try to do it alone.
Before commencing Interferon based treatments ensure that the Liver Clinic send you to a psychiatrist for expert assessment and/or treatment of depression. Even if you are assessed as 'not depressed' before commencing Interferon based treatments, it important to be aware of the signs of depression in case it overtakes you during the treatment.
If you are overwhelmed by such feelings, seek help immediately.
It is important to remember that Interferon induced depression does not mean that you are losing your mind; it is a side effect of Interferon and therefore can be quickly relieved with professional assistance.
Hepatitis C Transmission
Hepatitis C is transmitted only when the blood of a person with Hepatitis C gets out of their bloodstream and into the bloodstream of another person. Even tiny specks of blood can carry Hepatitis C into the bloodstream when there is an open break in the skin.
It is perfectly safe to live with a person who has hepatitis C. Hepatitis C is not transmitted by sharing cups, glasses, food, drinks, eating utensils, bathrooms, soap or towels with people. Hepatitis C is not transmitted through hugging, kissing or touching people. Hepatitis C is not transmitted through the semen, vaginal fluids, saliva, tears or sweat of people who have the virus. Hepatitis C is transmitted only when the blood of a person with Hepatitis C gets out and into the bloodstream of another person, this requires that both people must have open wounds, because hepatitis C must enter the second person through an open break in the skin.
Hepatitis C can be passed from person to person in any of the following activities:
- Injecting with un-sterile injecting equipment for example by sharing drug injecting equipment or through an accidental needle-stick injury where the needle has just been used;
- Un-sterile tattooing, body piercing, acupuncture needles;
- Receiving unscreened blood transfusion (in Australia before 1990);
- Use of un-sterile medical, surgical or dental instruments where blood is exposed;
- Ritual blood exchange, for example 'blood brothers';
- Sharing razors, tooth-brushes or manicure equipment with a person who has Hepatitis C;
- Hepatitis C positive mother delivering baby but ONLY if mother’s blood gets under baby’s skin.
If you are co-infection with HIV and Hepatitis C, the risk of transmitting Hepatitis C greater because co-infection increases the HCV viral load in your blood.
What does this mean for sex
Co-infected people may pass on Hepatitis C through unprotected sexual penetration if blood gets out and into the bloodstream during sexual penetration. However HIV is the greater concern for sexual penetration. Correct condom use can prevent the spread of HIV.
If a person has both HIV and Hepatitis C, only safe sex barriers such as condoms can protect sex partners from transmission.
What does it mean for childbirth
A mother who is co-infected with Hepatitis C and HIV is more likely to pass HCV onto their babies during birth. While there are now are very effective drugs to prevent maternal transmission of HIV, only avoidance of breaking baby’s skin can prevent Hepatitis C transmission.
Prevention – how to stop the spread of Hepatitis C
Because Hepatitis C is only a blood-borne virus, people with Hepatitis C pose no threat to anyone in the home or workplace as long as everyone is 'blood aware'. Blood awareness means always treating everyone’s blood as potentially able to cause infection:
- Cover up any open cuts and sores with band-aids.
- Do not share razors, nail files or toothbrushes with other people.
- Always wear disposable rubber gloves when giving first aid or cleaning up blood spills.
- When injecting drugs, do not share needles, syringes, swabs, tourniquets, filters, water or spoons.
- When injecting, clean the table and wash your hands before and after each hit.
- When you get a piercing, tattoo, acupuncture or dentistry; make sure the job is done by a professional who uses new needles, properly sterilised equipment, gloves, and (for tattoos) individual ink pots.
- Dispose of bloody needles or sharp instruments in a strong plastic sealed container such as a plastic drink bottle with a lid (or the yellow Sharps Disposal containers that are available free at the local Needle & Syringe Service).
- Dispose of soft blood stained material a leak-proof plastic bag.
- Clean up blood spills with paper towel; then wash area with warm, soapy water and finally, wipe area with bleach.
Testing for Hepatitis C
Who should get tested for Hepatitis C?
If you have:
- injected IV drugs;
- received un-screened blood-transfusion (Australian Blood Banks started screening for Hepatitis C in 1990, but in many other countries screening still does not occur);
- had un-sterile tattoo, body piercing or acupuncture;
- had surgical or dental operations in un-sterile conditions;
- shared razors, toothbrushes, manicure equipment with someone who has Hepatitis C.
If you think you have been exposed to Hepatitis C you can have blood tests to find out for sure. You must specifically ask for Hepatitis C blood tests. If you have HIV, it is possible that Hepatitis antibody may not show up in a blood test that looks for Hep C anti-bodies. Health care workers must use the PCR blood test for Hepatitis in order to get an accurate result.
If I have Hepatitis C can I drink alcohol?
Alcohol is toxic to liver cells and causes inflammation. If alcohol induced inflammation is continual, the ongoing damage will eventually lead to scarring of the liver.
In the liver of the Hepatitis C Positive person, the virus is slowly multiplying; this causes inflammation and eventually may do enough consistent damage to cause scarring. Partly Because Hepatitis C is slow and the liver repair is very fast, only a minority of people with chronic Hepatitis C will accumulate enough Hepatitis C related liver damage to cause life threatening illness.
Alcohol consumption damages liver cells; Hepatitis C replication damages liver cells; The combination of alcohol consumption and Hepatitis C means more liver cells are damaged (than by alcohol alone or by Hepatitis C alone) so this increases both the likelihood of and rate of serious liver damage (scarring, fibrosis and cirrhosis).
Some people need help with strategies for cutting down on alcohol or giving it up, Drug & Alcohol Helplines can refer to professionals who can help people to control their alcohol consumption.
Symptoms of Hepatitis C
Some people with chronic Hepatitis C experience some or all of the following:
- 'flu like' symptoms (fevers/chills, muscle-aches, joint aches, fatigue);
- indigestion -difficulty digesting food especially fatty/fried food;
- poor appetite, nausea or vomiting;
- pain under ribs on right side of abdomen;
- 'foggy brain' and poor concentration and/or headaches;
- psoriasis (patches of red, scaly flakey skin rash) and/or itchiness
- irritable bowel syndrome and/or diahorrea;
- hormonal imbalances including disruption of thyroid functioning and/or menstrual cycle;
- severe hang-over (disproportionate to alcohol intake);
- fatigue (severe and debilitating tiredness) which can be ongoing or occasional;
- depression, mood swings;
- social isolation related to labeling as 'IV drug user'.
Who do I need to tell about Hepatitis C?
A person with Hepatitis C is not legally obliged to tell anybody about having Hepatitis C. People with Hepatitis C do not pose any risk to their family, friends, workmates or health care workers.
Hepatitis C is a widely misunderstood condition: ignorance, fear, prejudice and discrimination are common. On Hepatitis C Helpline we hear many stories from callers who have told their employer, dentist, workmates even sometimes friends or family members only to find out later that they experience discrimination because of that disclosure. We advise callers to think very carefully before telling ANYBODY about their Hepatitis C status. Deciding who to tell or not tell can be difficult.
If you choose to confide in a trustworthy person who cares about you it is important to work out the details of HOW, WHEN and WHERE to break this often shocking news. Generally it is important to reassure the person that you pose no risk to them or to others (unless sharing injecting equipment).
Remember that many people do discriminate; so before telling anyone about having Hepatitis C, think very carefully about whether or not it will be good for you if they know.