* Hepatitis C virus (HCV) is an infection that affects the liver
* HCV is contracted through blood-to-blood contact
* As many as 300,000 Canadians are infected with the hepatitis C virus
* Only 25% of these Canadians are aware they carry the hepatitis C virus
* HCV affects each person differently
* Sometimes there are no symptoms; sometimes there are
* HCV can progress slowly, or become a serious threat to your health in as little as five years
* Hepatitis C patients should not use alcohol or recreational drugs
You’ve been diagnosed
“For years I knew there was something wrong. I was tired all the time. When the doctor came up with the diagnosis of hepatitis C, I finally had an answer and could concentrate on getting better.”
“I was healthy, I was happy; I never suspected there was anything wrong until I gave blood. They sent me a letter telling me I had hepatitis C and to contact my doctor. To say I was shocked, was an understatement.”
If you’ve just been diagnosed with the hepatitis C virus (HCV), you probably have a lot of questions. You may be confused, perhaps scared, and certainly concerned about what having hepatitis C means to you, your family, and your future. It is important to know you are not alone – you have the support of your health care professionals – and effective treatment exists than may be right for you.
This pamphlet, “Knowledge is Power – Taking Control of Hepatitis C” will give you a better understanding of HCV so you can choose your treatment with confidence and base your decisions on the facts, not the fear. A glossary of the terms, which are underlined in the text, are provided for you at the end of this booklet to help you understand the key medical/technical terms that are commonly used.
Your knowledge is power and you can use it as a weapon against hepatitis C.
What is Hepatitis C?
“I found out I had hepatitis C when I donated blood. The first thing that went through my mind was ‘what’s hepatitis C?’ The next thing – ‘how do I get rid of it?”
Quite simply, hepatitis C is a disease caused by the hepatitis C virus (HCV) which has infected your liver. A virus is a very small organism that attaches itself to your healthy cells and forces them to make more of the virus. Your body tries to fight viruses with antibodies, but the hepatitis C virus is particularly strong; it will change to fight back against your body’s defenses. Unfortunately, antibiotics, which kill bacteria are not at all effective against viruses.
Experts have identified two types of hepatitis C: acute hepatitis C (short-term infection) and chronic hepatitis C , (long-term, progressive infection). These are broken into sub categories:
Chronic hepatitis C can occur on its own and is generally the more serious of the two types. In about 80% of cases, however, acute hepatitis C develops into chronic hepatitis C over time. Both chronic hepatitis C and acute hepatitis C can cause very different degrees of symptoms and liver function damage. In many cases, HCV infection can be treated effectively with medication.
How you may have become infected?
“Yesterday I found my oldest son, a teenager, standing in front of the bathroom mirror, trying to shave for the first time. I reminded him that his dad has hepatitis C. He then realized that it wasn’t a good idea to borrow his dad’s razor.”
Hepatitis C is contracted from blood-to-blood contact. This means that you probably became infected by blood tainted with the virus entering your bloodstream. You may never discover how you contracted hepatitis C, but now that you are aware of your infection, it is up to you to take precautions to protect your family, friends, co-workers, or anyone else who may come in contact with your blood. If you use common sense and educate your loved ones with the facts about hepatitis C, you and they can live risk free.
Important facts to know
* The risk of spreading hepatitis C through normal household contacts is very low
* Oral transmission of HCV has not been proven, so you can hug and kiss your family and friends
* Breast milk, semen, urine, saliva, and tears may contain the hepatitis C virus
* Do not share razors, toothbrushes or any other personal hygiene instrument that could contain blood particles and infect another. You can share bathroom facilities
* There is a 2% to 3% chance that HCV can be transmitted through sexual intercourse. The presence of sexually transmitted diseases (STD’s) increase the risk of transmitting hepatitis C. Inform your partner of your infection and if you are sexually active with multiple partners, you should always use a condom
* Menstrual blood is known to carry HCV – women should avoid sex during this time
* You must not give blood or donate organs
* There is a chance that the virus can be passed to your newborn during childbirth
Your liver and HCV
“My doctor thinks I’ve had hepatitis C for about 15 years, but I only found out two months ago. All this time and I didn’t know. I’ve got liver damage now. Shouldn’t feel sick or something?” Harold, Winnipeg
Your liver works 24 hours a day, performing over 500 vital functions for your body. Almost all the blood returning from your intestinal tract to your heart passes through your liver. It is absolutely necessary to your body’s healthy function and you cannot live without it.
The hepatitis C virus lives in your liver. When it invades healthy liver cells, it causes those cells to become inflamed. Over time, this will affect the way your liver functions. How hepatitis C affects you, and if or when you will experience decreased liver function, is different for everyone. There is no way to predict how you will react to HCV. However, there are some things we do know:
* You can live with HCV for many years without experiencing any major symptoms, or you might experience minor symptoms such as fatigue. Symptoms can come and go over time, and the presence or absence of symptoms do not relate to the degree of liver damage that may be occurring
* Chronic, long-term inflammation of the liver can cause liver cell damage and result in fibrosis (liver scarring), or even cirrhosis. These changes can happen in as little as 5 years, or can take as long as 30 years. About 20% of chronic hepatitis patients develop cirrhosis within 10 to 20 years
* Use of recreational drugs or alcohol affect how fast inflammation develops into fibrosis or cirrhosis
* There is an increased risk of liver cancer in people with cirrhosis
Proper nutrition, plenty of rest, avoiding recreational drugs or alcohol, and a responsible approach to treatment can make all the difference in managing hepatitis C. Taking control of your HCV won’t be easy; it will take commitment. Your knowledge of hepatitis C can give you the power to take control of your health and your future.
How your liver works for you:
* Cleans alcohol, drugs, harmful by-products, and other toxins from your blood
* Converts most medicines, like allergy medications, into forms your body can use
* Removes old red blood cells
Your liver makes essential proteins:
* That transport nutrients and other substances through the blood to other organs and tissues
* To clot your blood
* That provide resistance to infection and bacteria
Your liver maintains a healthy balance in your body of:
* Cholesterol – your liver produces it, excretes it, converts it
* Essential vitamins and minerals
* Glucose (simple sugars), by producing, storing and supplying it to the rest of your body
* Fat, by producing and supplying it to the rest of your body
Phases of Hepatitis C
Phase I: Infection
* HCV virus enters the blood stream, attaches to liver cells, and begins to reproduce
* New virus, made in infected liver cells, invades more liver cells and infects them
Phase II: Inflammation
* Infected liver cells become inflamed
* The inflammation causes liver cells to die
Phase III: Fibrosis
* Over time, hepatitis C commonly progresses to fibrosis
* Among the healthy and inflamed liver cells strands of scar tissue develop
* If your liver biopsy shows significant fibrosis, it usually means you’ve been infected with HCV for 10 years or more
Phase IV: Cirrhosis
* When fibrosis increases, cirrhosis begins to appear
* Cirrhosis affects how blood flows in and out of the liver. This impairs normal liver functions
Tests often used for Hepatitis C patients
The following chart will help you understand the tests and procedures commonly used to diagnose HCV and to monitor its progress in your liver.
Definition and Comments
Hepatitis C antibody (Anti-HCV)
HCV antibodies are produced by your body to fight HCV, and then remain in your system for life. This test measures the presence of HCV antibodies in your blood.
Alanine aminotransferase (ALT)
When liver cells are injured or destroyed enzymes from those cells escape into your blood. This test measures the level of the enzyme ALT in your blood and is a general indicator of inflammation.
Hepatitis C RNA (HCV RNA) or
Polymerase Chain Reaction (PCR)
This blood test can be done for two different reasons:
a) the qualitative test tells whether or not there is HCV in your blood; and
b) the quantitative test measures the number of HCV particles in your blood.
There are different genetic strains of hepatitis C. It is extremely helpful to know the genotype of your virus because different types require different lengths of treatment.
A liver biopsy involves removal of a small piece of liver tissue through a needle. The specimen is analyzed under a microscope to determine the amount of liver damage. A liver biopsy: 1) confirms the diagnosis and rules out other potential disorders; and 2) gives your doctor a true picture of the stage and degree of activity of hepatitis C in your liver.
An ultrasound uses sound waves to create a picture of the liver. It reveals the size and texture of your liver, and the size of bile ducts and blood vessels. It is a safe and painless way to investigate your liver and the supply of blood to it.
“You bet I’m going to do everything I can to increase my chances of beating this thing!”
You now have a good idea of what hepatitis C is, how it affects your liver, and what you can do to safeguard yourself and others. Now it’s time to make some important decisions – to use the knowledge you’ve gained about HCV to take charge of your future health.
Let’s be clear – there is no treatment that will work for every single patient with HCV infection. This is not to say that there isn’t hope, but treatment of hepatitis C is a big decision – a commitment on your part. Talk to your doctor or nurse, discuss realistic treatment goals based on your diagnosis. Do you want:
* more energy. To feel less tired or fatigued?
* to reduce your chances of developing cirrhosis or liver cancer?
* to help your liver recover normal functioning?
Outlined below are treatment alternatives you should be aware of. Do some research and talk to your doctor or nurse about which choice is best for you.
Generally, there is little scientific proof to support claims made on behalf of herbal medicines. Alternative medicines are not rigorously controlled, so, proof of safety, possible side effects, exact ingredients, potency, purity, directions for use, and the effectiveness of the herb, may be difficult to determine. Some herbs may cause serious problems to your liver, and your general health, if not taken properly. It is very important that you inform your nurse or doctor about any herbal remedy you are taking or are thinking of taking.
Alpha interferon is approved for the treatment of HCV infection. Interferon treatment is injected three times per week and is effective for approximately 50% off patients – meaning that these patients had an undetectable amount of the HCV in their bloodstream immediately following the end of the treatment. However, when thee same patients were tested for the hepatitis C virus six months later, more than half had relapsed
Interferon seems to work best for chronic hepatitis C patients the sooner it is used after infection. The treatment course is twelve months. The side effects include flu-like symptoms, muscle cramping, headaches, fever, fatigue, or depression. As well, some patients may show a reduction in disease-fighting white blood cells, or a decrease in the number of platelets in their blood.
According to recent Canadian guidelines, the recommended treatment for HCV infection is with a combination of interferon alfa-2b and ribavirin. Rebetron* is the combination of these two therapies which together have produced better results than either treatment used alone. Rebetron* combines ribavirin capsules (taken orally twice daily) and interferon alfa-2b (injected 3 times weekly).
Interferon is a biological response modifier. This drug helps your body’s immune system to fight infection. Ribavirin, on the other hand, is an antiviral agent which fights HCV.
The success of any treatment is not measured by how effective it is while you are taking it, but whether the results can be maintained for at least six months after treatment. Studies, where combination therapy was the only treatment ever used by a patient, showed that 41% had undetectable levels of HCV-RNA in their blood six months following treatment, and 62% showed improvement in their liver tissue. As well, the use of combination therapy in patients who were previously treated with interferon and then relapsed, showed that 49% had undetectable levels of HCV-RNA in their blood.
The side effects of combination therapy will vary from patient to patient. In addition to the side effects of interferon therapy, ribavirin can also cause shortness of breath, coughing, and anemia. If you suffer from any form of heart disease, please notify your healthcare professional.
It is very important that both you and your partner use effective birth control methods while taking combination therapy, and for six months following the end of your treatment. Failure to do so may result in serious birth defects. Consult your doctor or nurse about the best form of birth control for you and your partner.
Combination therapy has been researched, tested, and approved for treatment of hepatitis C. No, it’s not for everyone – but it may be for you. How well Rebetron* works for you will depend on a number of factors, but you should discuss Rebetron* with your doctor or nurse, and ask if this option is right for you.
“I researched my options, talked to my doctor and decided that Rebetron* was the right treatment for me. It wasn’t easy, but I’m glad I stuck with it. It’s been a year now, and I’m virus free.”
Acute hepatitis C: An inflammation of the liver, caused by the hepatitis C virus. It begins suddenly or gradually, and rarely lasts longer than one or two months. Usually, there is little immediate damage to the liver, but, in rare cases acute hepatitis C can cause severe, even life-threatening liver damage.
Antibodies: Proteins produced by our body as a natural defense to infections. They attach to the virus and try to destroy it.
Bacteria vs. Virus: Bacteria are single-celled organisms, some of which can cause diseases in humans. A virus is an infectious organism which is visible only with very powerful microscopes. Unlike bacteria, viruses are genetic material wrapped in a coat of protein and they survive by changing the function of the cells they infect. These infected cells supply the viruses with energy and the means to reproduce themselves.
Biological response modifier: Medication that changes the genetic make up of a cell, to produce a desired response.
Cholesterol: A fatty substance found in all tissues and an important part of the membranes of each cell in the body. The liver uses cholesterol to manufacture bile acids, which aid in digestion.
Chronic hepatitis C: Patients with chronic hepatitis C have the disease for life if it is left untreated. There are different states of chronic hepatitis C:
* chronic state carrier: Very little inflammation or liver function damage. Symptoms are usually mild.
* chronic persistent: Very little development of liver damage over time. However, some patients may develop chronic active hepatitis C over time.
* chronic active: Damage to the liver is extensive and liver cells are destroyed. Cell damage causes scar tissue in the liver (fibrosis), resulting in cirrhosis. In such cases, liver function is reduced. This can lead to liver failure.
Cirrhosis: A type of permanent and progressive liver damage. Any chronic liver disease can lead to scarring. Once present, cirrhosis is permanent, but its progress can be stopped.
Enzymes: A chemical substance made up of protein which is produced by living cells. Enzymes change the rate of chemical reactions in other substances.
Fibrosis: Scar tissue that forms in reaction to an infection or injury. It can occur in the liver as a result of long-term inflammation.
Glucose: A simple sugar which is essential to your cells for energy. Glucose passes directly into the bloodstream from the small intestine and is stored in the liver as glycogen.
HCV Antibodies: Antibodies that attack the hepatitis C virus. Having HCV antibodies in your blood means that you are currently infected, or, that your body has overcome HCV and you are no longer infected. Further tests are required.
Hormones: Powerful chemical substances that are produced by the cells of a particular organ which are released into your blood stream and can regulate the activity of other organs.
Infection: An invasion of body tissues by “germs”, like viruses and bacteria.
Inflammation: A reaction of your body to injury or disease. Inflammation may result from physical damage, infection, or surgery and is characterized by heat, swelling, redness or pain.
Liver Biopsy: Removal of a small piece of tissue which is examined under a microscope to evaluate effects of a disease. A special needle is passed through the skin and into the liver to remove a very small piece of tissue for examination.
Platelets: Disk-shaped structures that float in blood plasma, or fluid, and are crucial to the clotting process.
Relapse: The return of symptoms of a disorder after what seemed like a recovery.
Side effects: Conditions, or consequences, experienced by a patient when taking medication, that is not directly related to the desired effect, but is caused by that medication.
Virus: A type of “germ” that may cause an infection. It is made of genetic material wrapped up in a protein coat.
For more information about hepatitis C, contact:
Canadian Liver Foundation
365 Bloor Street East, Suite 2000
Toronto, ON M4W 3L4
Telephone: (416) 964 – 1953
Fax: (416) 964 – 0024
E-mail: [email protected]
Hepatitis C Society of Canada
3050 Confederation Parkway,
Mississauga, Ontario L5B 3Z6
Toll Free: 1-800-652-HEP C (4372)
Telephone: (905) 270 – 1110
Fax: (905) 270 – 1277
E-mail: [email protected]
For ongoing news, support, and information about hepatitis C, contact:
The Hepatitis Information Network