10 Steps to Take After a Hepatitis C Diagnosis

Even though millions of people in the United States have hepatitis C, being diagnosed with it can be jarring.

Left untreated, a hepatitis C infection can cause liver damage over time. Today, it’s typically spread through contact with the blood of an infected person — usually by sharing syringes and needles or reusing them without adequate sterilization — but in the past, it was also spread via the transfusion of infected blood that wasn’t properly screened, according to the Centers for Disease Control and Prevention (CDC).

If you recently learned that you have hepatitis C, you likely have a host of questions and concerns for your doctor, including how you got the virus, whether it’s contagious, if it’s caused any liver damage, and what your treatment options are.

The good news: Today, the majority of people who have hepatitis C can be cured. “I am confident that I will be able to cure everyone who walks through my door with hepatitis C, if I can get the meds for them,” says Jonathan M. Fenkel, MD, a professor and director of the Viral Hepatitis Center at Thomas Jefferson University Hospital in Philadelphia.

Meanwhile, it can help to learn what steps you can take to stay in control of your health. Start with these.

1. Collect Your Thoughts and Breathe

If your diagnosis came as a shock, you aren’t alone. Maybe it resulted from IV drug use that occurred years — or even decades — ago, or maybe you were infected by a blood transfusion you received before the blood supply was screened. Regardless of the reason, take a deep breath and avoid panicking.

“The good news is that we have a cure,” says Amy Nunn, a doctor of science who is the executive director of the Rhode Island Public Health Institute and a professor of behavioral and social sciences at the Brown University School of Public Health in Providence. “[Hepatitis C] is a public health success story.”

What matters now is moving forward.

2. Seek New Information

Current treatment options are more effective and have fewer side effects than older ones, according to the CDC. And, the more you know about hepatitis C, the easier it’ll be to make the best decisions for the future.

Plus, by learning how to avoid passing the virus on to others, you’ll be able to protect the people around you. “I encourage people not to share needles, share razors, or get [unlicensed] tattoos,” Dr. Nunn says.

3. Build Your Medical Team

You don’t have to be treated at the same clinic (or by the same doctor) who diagnosed you. You may want to find a specialist who’s comfortable managing hepatitis C, Dr. Fenkel says.

You can ask for a referral to a hepatologist (liver specialist), gastroenterologist (digestive tract specialist), infectious disease specialist, or doctor or nurse practitioner whose clinic frequently works with people who have hepatitis C.

4. Work Closely With Your Care Team

To understand how hepatitis C is affecting your body, your doctor will likely run a number of tests. First up is determining which genotype, or strain, of the virus you have, which will influence your treatment options, Fenkel says.

“We also need to know how much damage has been done to the liver,” he says. “I usually recommend a good abdominal ultrasound to check for cirrhosis. In people without cirrhosis, I recommend a test to estimate the amount of fibrosis, or scarring, in the liver, such as a liver elastography.”

If you have to delay your hepatitis C treatment — for example, if you’re waiting on approval from your health insurance provider — make sure you’re tracking your condition with the proper tests, Fenkel says. These include tests that monitor your viral load, as well as liver enzyme tests. In rare cases, hepatitis C treatments can reactivate previous exposure to hepatitis B, and some people may require additional monitoring for this, he says.

Work with your care team to ensure you are getting tested regularly, both before and during treatment. Ask your doctor to go over and explain the results of your labs after every test, and keep your own records to stay on top of your care.

5. Stick to Your Treatment Plan

Current medications offer the possibility of a cure in as little as eight weeks, according to the CDC. But, not all medications are right for everyone. Try to keep an open mind about which treatment is best for you and your situation, Fenkel says.

Regardless of which option you and your doctor choose, be sure to follow the prescription directions closely. Taking medications incorrectly can be dangerous, according to the American Liver Foundation (ALF). And, be sure to tell your doctor about any medications or supplements you’re currently taking, says Fenkel.

6. Maintain a Healthy Lifestyle

Because the hepatitis C virus can damage your liver, it’s important to take extra steps to protect this vital organ. The ALF recommends:

• Eating a healthy diet
• Staying hydrated by drinking 6 to 8 glasses of water each day
• Exercising regularly
• Maintaining a healthy weight
• Managing and reducing stress
• Avoiding supplements that may affect the liver
• Get vaccinated for hepatitis A and hepatitis B

7. Avoid Harmful Substances

While it’s essential to pick up healthy habits, it’s equally important to avoid harmful behaviors. Alcohol is a toxin to the liver, and drinking too much can lead to cirrhosis and advanced liver disease. “We tell patients that if they drink alcohol, they should stop until they are evaluated and we see that their liver is healthy,” Fenkel says.

If you smoke or use other substances, consider quitting, as cigarettes and drugs can cause liver damage, too. It’s especially important to avoid snorting or injecting drugs, which can transmit the hepatitis C virus to others.

Talk to your doctor if you need help overcoming alcohol, tobacco, or drug dependence.

8. Take Care of Your Emotional Health

Hepatitis C has been linked to anxiety and depression, as well as a negative quality of life, according to a review published in August 2021 in the World Journal of Gastroenterology.

What’s more, older treatments for hepatitis C carried the risk of depression, but Fenkel says newer medications have fewer emotional side effects. If you’re experiencing anxiety or depression, consider talking to a mental health professional.

9. Pick Your Confidants Carefully

Even though hepatitis C can be acquired from needlestick injuries and prior blood transfusions, people often associate the infection with recreational drug use — and some of them may judge you unfairly.

Disclosing your medical information to others is a personal decision, explains gastroenterologist Daniel Raines, MD, an associate professor of clinical medicine at the Health Science Center and the acting section chief for gastroenterology at Louisiana State University in New Orleans. At the same time, talking to trusted loved ones or other people with hepatitis C can be a source of support.

10. Avoid Reinfection

Successfully treating hepatitis C doesn’t protect you from getting infected again. Once you’ve been cured, it’s important to prevent reinfection.

Remember not to share needles or drug paraphernalia; avoid unprotected sex with casual sex partners; don’t share razors, toothbrushes, or nail clippers with anyone; and if you get a tattoo or piercing, make sure the needle is new and clean. Fenkel also advises getting a new toothbrush and razor blade once your viral load drops to an undetectable level.