Whether you’ve just been diagnosed or worry you could have hepatitis C, you’re probably nervous, confused, and definitely scared. That’s normal, and everyone featured on HealthCentral with a serious illness felt just like you do now. But we—and they—are here for you. On this page alone, you’ll discover not only the realities and challenges of the condition, but also the best treatments, helpful lifestyle changes, wisdom from people who have been where you are now, and all the critical information you need to help you not just manage—but thrive. We’re sure you’ve got a lot of questions...and we’re here to answer them.
It’s hard to keep track of the alphabet soup of hepatitis viruses (there are A, B, C, D, and E strains), but here’s what you need to know about this one: Hepatitis C, first identified in 1989, is a viral liver infection spread via the blood that causes liver inflammation and, if left untreated, can result in serious liver damage, including cirrhosis (aka scarring).
What hepatitis C isn’t is a virus that can be spread through casual contact like hugging or shaking hands, and it definitely isn’t spread through sharing food or drinks.
In order to be infected, your blood needs to come in contact with blood that's carrying the virus. This can occur via shared needles, unclean tattoo equipment, and sharing razors or nail clippers with an infected person; there’s also a slightly increased risk of transmission during sexual contact if there’s a break in the skin and blood is present.
What’s more, of the 3.9 million Americans diagnosed with Hep C each year, half don’t actually know that they have it because they have zero symptoms. Yep, the infection can be doing its damage silently for decades, which is why screening is important (more on this below!).
Most recently, the CDC reported a 21% uptick in hep C cases between 2015 and 2016, which they credit to the opioid epidemic and an increase in drug use, including the use of shared needles.
Luckily, hep C is now almost entirely curable due to a new treatment regimen that’s way more tolerable than it once was. And that's very good news.
What Causes Hepatitis C in the First Place?
When your blood is exposed to a hep-C infected person’s blood, the virus beelines to your liver and rapidly reproduces. As this happens, the virus sends your immune system into overdrive as it works to eliminate those infected liver cells.
Over time, the way in which your immune system goes about destroying those infected cells can ultimately lead to your liver scarring, which can affect its ability to function properly.
You’re at a higher risk of getting hep C if you:
Are over 50: Your risk increases if you received a blood transfusion before screening began.
Are an illicit drug user: This includes anyone currently injecting or inhaling drugs or anyone who's done so in the past. Sharing needles can transmit the disease while the use of straws to snort drugs can breakdown blood vessels in the nose which, in turn, can lead to bleeding and, you guessed it, possible transmission.
Work in healthcare: Accidental needle sticks or contact with other sharps can increase your risk.
Have certain medical conditions: People with HIV, those who received clotting factor concentrates (used for hemophilia) before 1989, individuals who were on long-term hemodialysis (blood is pumped out of your body and filtered through an artifical kidney machine), or anyone with persistently abnormal ALT (alanine aminotransferase) levels, which indicate liver damage, have a higher chance of contracting hepatitis c.
Got a piercing or tattoo in an unclean environment: On average, individuals with hep C are about four times more likely to have tattoos, according to the American Association for the Study of Liver Diseases. Why? Not all tattoo parlors are created equal. Vetting your ink spot is crucial as some places use unsterile or contaminated equipment and needles, which is a big no-no.
Received a blood transfusion or organ transplant before the virus was discovered in 1989: This includes receiving a notification that you received blood from a donor who later tested positive for hep C.
Have a mom who had hepatitis C when she was pregnant with you: Babies born by vaginal delivery or c-section have about a 5% greater risk of getting hep C.
Share razors, toothbrushes or nail clippers: You’ll have a greater risk if you come into contact with the blood of someone with hep C from using these grooming tools.
Do I Have the Symptoms of Hepatitis C?
Hep C usually shows up first in routine bloodwork since many people have no symptoms at all. In fact, because hep C can remain dormant for so long—it takes 10 to 40 years to progress from mild disease to cirrhosis, liver failure or liver cancer—the Centers for Disease Control and Prevention (CDC) is now recommending a one-time screening blood test for anyone born between 1945 and 1965 since this population is more at risk of having received a tainted blood transfusion.
In the meantime, it's crucial to know what the symptoms of hepatitis c cirrhosis are. They include:
Clay-colored poop: A damaged liver can’t transfer bilirubin—a yellow substance created by the breakdown of dead red blood cells in the liver—from blood to the stools. Bilirubin is what gives poop its usual brownish color.
Dark urine: That bilirubin has to go somewhere, and in this case it gets dumped into your pee.
Jaundice: As levels of bilirubin build up in the body, the whites of your eyes and your skin will look yellow.
Fever/Fatigue: As the body tries to eliminate the infection, a mild fever may develop and you may feel rundown.
Loss of appetite: Food may just not taste right to some people with hep c, which may lead to less interest in food.
Nausea: It's a whole thing. Hep C interferes with bile production and that makes it harder to digest fatty foods. The result? You feel queasy.
Stomach pain or swelling: Some people may experience pain in the upper part of their abdomen.
Joint pain: All that inflammation in your liver produces antibodies that may aggravate the joints.
Taking action quickly if you have any of these symptoms is crucial. The liver, which is the second-largest organ (next to skin) has a big job, or rather jobs, including producing most of the protein we need, breaking down nutrients from food to produce energy, preventing nutrient shortages by storing certain vitamins, minerals and sugar, producing bile, which helps digest fat and absorb vitamins A, D, E and K, and fighting infection by removing bacteria from the blood.
It's 100% true that until about five years ago, Hepatitis C (HCV) treatment was pretty awful. We’re going to help put some of that history in context and most importantly, show you how much things have changed when it comes to treating (and curing) Hep C.
How Do Doctors Diagnose Hepatitis C?
You may be screened for hep C if you’re having symptoms, you know you’ve been exposed, or your routine blood tests show elevated liver enzymes, which can indicate that you have inflamed or injured liver cells. It’s normal to have low levels of enzymes in your blood to do things like break down proteins and turn food into energy. You run into problems when there are too many of the following enzymes in the liver and bloodstream:
Alanine transaminase (ALT)
Aspartate transaminase (AST)
Alkaline phosphatase (ALP)
Gamma-glutamyl transpeptidase (GGT)
If your healthcare provider is concerned that you have hep C, these tests will be ordered even if you don’t have any symptoms:
Hep C Viral Antibody Test: This is the first test used to determine whether you have been infected with hep C at some point. The results will come back either positive or negative, but it doesn't reveal whether the virus is active.
Hep C Viral Load: This test checks for hep C genetic code in your blood and determines whether you have an active infection. There are two types of this test: Qualitative tests are either positive (it shows there’s hep C genetic code in your blood) or negative (shows there’s no active virus); quantitative tests (known as a hep C RNA test) measures how much hep C is in a drop of blood.
Hep A and B Tests: These viruses also target the liver, so your healthcare provider will want to make sure you’re not battling multiple infections at the same time. Also, there’s a vaccine for Hep A and Hep B (there’s currently no vaccine for Hep C) so you’ll want to get vaccinated for both to avoid further stress on your liver.
What Is the Best Treatment for Hep C?
While there is currently no hep C vaccine, there are several FDA-approved prescription drugs that can cure the virus about 95% of the time. Treatment usually takes two to three months. Your healthcare provider will recommend a medication for you based on the genetic strain of the virus (Genotype 1 is the most common in the U.S.), the severity of your liver disease, and the presence or absence of other medical conditions such as HIV and kidney disease.
There are some people who are able to clear the virus on their own without treatment within the first six months of infection (called the acute phase). Most of the time though, infections last longer than six months (aka chronic hep c) and the body needs meds to kill off the virus.
Back in the day, the treatment for hep C was as grueling as chemotherapy for cancer and included weekly injections as well as oral medications, usually a combination of interferon (not really used any more) and ribavirin (still used sometimes). We’re talking 12 to 18 pills a day for a year complete with tough side effects like nausea or vomiting, hair loss, severe depression and suicidal thoughts. Now, thanks to medical advances, hep C is considered curable with oral meds taken every day for two to six months, and side effects are generally limited to fatigue, headache or nausea. It's not perfect, but it's a lot better than it used to be.
Today, direct-acting antivirals (DAAs) are what's typically prescribed to attack the hep C virus and stop it from multiplying. These oral meds have dramatically improved the chances of a hep C cure and are now considered first-line treatments. DAAs fall under one of these four categories (based on the proteins and enzymes they target to weaken the virus), which may be used individually or in combination:
Protease (NS3/4A) inhibitors: Targets the NS3/4A protease enzyme, which is responsible for helping the virus copy itself and drug resistance.
Polymerase (NS5B RNA-Dependent RNA) inhibitors: This group of DAAs work to block the enzymes that help the hep C virus mature.
Protein (NS5A) inhibitors: These zone in on the protein that's in charge of assembling new hep C virus particles and replicating the virus itself.
Combination DAAs: By combining several DAA drugs, you’ll attack the virus in multiple ways and avoid drug resistance.
Once your treatment is complete and the virus is cleared, you still may require regular screening and follow-up depending on the level of liver damage that was present when you were diagnosed.
The stories of an advocate, an actor, a musician, and a health educator who found ways to overcome the stigma and challenges of living with hepatitis c.
Does Hepatitis C Have Serious Complications?
If you don’t treat hep C, you can end up with serious liver damage. Common complications of hepatitis C include:
Scarring of the liver (cirrhosis) that is irreversible
Blood and vessel problems, including cryoglobulinemia, a condition in which proteins in your blood stick together in cold weather creating build up and blockage in vessels
High blood sugar
Kidney issues, including acute kidney injury (AKI) and chronic kidney disease (CKD)
While many of these sound scary, especially the risk of cancer, you can lower your odds of all of them by getting screened, following your treatment plan, and staying on top of your follow-up care.
Preventing Hepatitis C
Trying to steer clear of the preventable risk factors—needle sharing, icky tattoo parlors, illicit drug use—we talked about above is one way to reduce your chances of getting hep C. Here are some other ways to make sure you are never exposed:
Avoid direct contact with blood/blood products
Never share bathroom items such as toothbrushes, razors, nail clippers and scissors
Practice safe sex. While it is rare to transmit hep C via intercourse, there is an increased chance of getting hep C from a partner if you have HIV, a sexually transmitted disease, rough sex, or have multiple sexual partners
What’s Life Like for People With Hep C?
Once you’re diagnosed, you may feel overwhelmed with the news that you have hep C, especially if you can’t trace when or how you were exposed. Our experts agree that the best first step is to focus on your treatment plan and try to stay healthy while you’re on your medications. This is because you may be extra tired, experience headaches, fatigue, anemia, nausea, and insomnia. To help make the treatment process go as smoothly as possible, be sure to take these extra steps, too:
Sex: It can be a big embarrassing blow to find out you have hep C. If you’re in a monogamous relationship, the best way to navigate this is to be open about discussing risks with your partner and always use condoms until the virus is cleared. You may also have to contact past partners and let them know.
Pregnancy: Due to possible effects on a fetus, if you’re pregnant and have hep C, you should wait to begin treatment until after you give birth. If you’re being treated for hep C, always use birth control during treatment and for approximately six months after you’ve completed your treatment.
Drinking: Now’s the time to stop drinking alcohol as imbibing can worsen your symptoms and interact with your medications. It can also cause further swelling and irritation to your liver.
Where Can I Find Hep C Communities?
Sometimes, it can feel like you’re the only person in the world with hepatitis C—an incredibly isolating feeling. But take heart: There are many others out there who know exactly what you’re going through—and they're ready and willing to help guide you through the Hep C journey.
Follow because: She was diagnosed with hep C at the age of 22, along with a whole host of other chronic conditions—all of which led her down a path of addiction. Her feed is now follows her new journey, one that feeds her body and soul the way she needs. And maybe the way you need, too.
Follow because: She battled hep C for 11 years—11 years of doctors, tests on end, and never truly feeling good. Throughout that, she also battled addiction, right up until the day her daughter was born and she left it all behind. Now, with hep C also finally behind her, she carries on a soul-searching lifestyle that will make you feel at peace just by following.
Follow because: As an author, health writer, and speaker, she’s become pretty dang comfortable talking about her life with hep C. So much so that she turned her experience with hep C (including a liver transplant) into “help” for anyone else living with the disease. Her website “I Help C” is “your best friends guide to hepatitis C and cirrhosis,” and it’s chock-full of health and nutrition tips to fuel your liver, and stories of her own experiences that are sure to leave you nodding along.
Top Hepatitis C Organizations, Nonprofits, and Support Groups
Hepatitis Education Project (HEP): It all started as a small support group in 1993, made up of a bunch of hep C patients and medical pros who came together to educate people living with chronic hepatitis. Before they knew it, they were helping others create their own support groups by providing them with all the tools they need. They’re now home to the only Hepatitis Resource Center in the world—a walk-in and telephone support center for hepatitis patients and family members—all staffed by volunteers who are affected by the disease.
World Hepatitis Alliance: This group is worldwide, with more than 280 member organizations across 91 countries, all with one common goal: to eliminate hepatitis by 2030. Most of their members are directly affected by hepatitis and can help spread awareness, while teaching others how to properly advocate for themselves. Join their alliance and help to shut down hepatitis.
Hepatitis C Mentor and Support Group (HCMSG): This organization was created solely to address the lack of education and support for those living with hep C and/or co-infected with HIV. The founders themselves are hep C patients and advocates. Just a sampling of what you can find here includes: education and training about hep C in layman’s terms; group meetings and one-on-one support; and patient assistant programs. They’re also the home of “The Circle Model,” which aims to not only treat hep C contracted by way of substance use, but also educates people on how to stop transmission and the benefits of being tested.
Hepatitis Victoria: All the heavy-hitters in the hep C world gather one-by-one around a mic to bring you this podcast. Hosted by nonprofit Hepatitis Victoria, a community working to help people affected by, or at risk of, liver disease and viral hepatitis, this podcast aims to squash stigmas around all hepatitis viruses. Hear and learn from some of the biggest advocates and experts in the field.
Frequently Asked QuestionsHepatitis C
Is hepatitis C sexually transmitted?
Hep C is transmitted through contaminated blood via things like shared needles, unclean tattoo equipment, sharing razors or nail clippers with an infected person and, yes, there’s a slightly increased risk during sexual contact if there’s a break in the skin and blood is present.
What are the early symptoms of Hep C?
Hep C is tricky because you might not have any symptoms at all before you test positive for the virus. But if you do experience symptoms, they may include clay-colored poop, dark urine, or jaundice due to a build-up of bilirubin in the body. Other symptoms include fatigue, loss of appetite, and joint pain.
What’s the main difference between hepatitis A, B, and C?
While they may have similar symptoms, Hep A, B, and C are caused by three different viruses, they are transmitted in different ways and they affect the liver differently. The biggest difference, however is that hepatitis A and B both have vaccines. Hepatitis C does not currently have a vaccine.
Can you have hep C and not know it?
Yes. In fact, since hep C can remain silent for many years, it takes on average a decade to 40 years to go from mild disease to cirrhosis, liver failure or liver cancer.
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