Common Questions from the HepatitisC.net Community
Last updated: November 2022
Have you, or someone you know, been diagnosed with hepatitis C? Do you have questions?
If you’re looking for more information about the diagnosis, treatment, or management of hepatitis C, visit our Frequently Asked Questions page. To better serve our HepatitisC.net community, we also partnered with our advocates to pull together a list of common community questions- check them out below!
Have hepatitis C or received treatment? Share your story with the community.
- Can I drink alcohol if I have hepatitis C?
- Why do my muscles and joints hurt?
- How do I safely dispose of a bloody tissue, or clean up blood?
- I can’t sleep. Is that because of my hepatitis C?
- I can’t concentrate or stay focused. Is that because of my hepatitis C?
- I was just diagnosed with hep C. Could my children have it?
- Who can be treated for hep C? Can I be treated if I do drugs?
- What is fatty liver disease?
- What are the side effects of treatment?
- Can hepatitis C affect my skin?
- Can hepatitis C affect my hair?
- What is MELD score?
- Can hepatitis C kill me?
- What should I eat if I have hepatitis C? Is there a specific diet I should follow?
Still need help? Here are answers to several common community questions, provided by HepatitisC.net advocate, Sue Simon.
What can I do to help my liver while I wait for treatment?
“There are healthy behaviors you can adopt. First of all, get your hepatitis A & B vaccinations. They will protect you from getting those viruses and doing further damage to an already sick liver. If you drink alcohol stop, or at the very least, cut way back. If you are overweight, cut down on fats and calories in your diet. Even a weight loss of 3% will help the liver. Lastly, do not smoke anything. Smoking with hepatitis C increases the progression of liver disease.”*
I am underinsured or have no insurance, how can I get treatment?
“There are organizations that may be able to help you access treatment. If you have no insurance, the pharmaceutical companies may be able to assist you. If you have insurance, but still cannot afford treatment, they cannot offer help. Some of the organizations that may be able to offer assistance to those with insurance are Patient Advocacy Foundation (800-532-5274), Partnership for Prescription Assistance (888-477-2669), and Patient Access Network Foundation (866-316-7263). Patients may also call Help-4-Hep (877-435-7443), an organization of peer counselors who have a database of places to go for hep C testing and assistance with paying for treatment, and getting help with copays. The help and information is free.”
Why do I have a positive hep C test, if my physician says I don't have the virus?
“The hepatitis C antibody test is the first test a physician orders when it seems like you may have the hep C virus. The antibody test looks for the antibody in your bloodstream. If that is found, more tests must follow. The antibody test means that you have been exposed to the virus at some time in your life. About 20-25% of patients actually fight off the virus without treatment. A very few may have a false-positive antibody test.
The next test ordered will be an HCV/RNA test, which patients call a “viral load test”. This test looks for the actual virus (instead of just the antibody). If that is positive (also called “detected”), the patient has the actual virus. The good news is that there are medications called direct-acting antivirals that are curing over 98% of patients with relatively few side effects and for a duration of treatment at 8-12 weeks. These medications are vastly improved over the old treatments of interferon and ribavirin, which cured only 40% of patients, lasted 6 months to a year of treatment, and had serious side effects.”
Is cirrhosis the same as end-stage liver disease?
“Cirrhosis is not necessarily end-stage liver disease. There are three stages of cirrhosis, Child-Pugh Class A, B, and C.
In Child’s Class A, usually called compensated cirrhosis, the patient’s liver is satisfactorily doing all of its 500+ functions. A patient may live many years with Child’s Class A cirrhosis if they take good care of themselves, keep their doctor appointments, and practice healthy lifestyle behaviors, such as no alcohol. Elevated bilirubin, elevated platelets, low red and white blood cell counts are often seen in these patient’s blood work. The 5 year survival is about 95%.
In Child’s Class B, the patient is becoming sicker. Albumin is dropping, as are clotting factors as they are manufactured in the healthy liver. They may have mild buildup of fluid in the abdomen, called ascites. They may also exhibit hepatic encephalopathy. This may be the appropriate time to speak with the doctor about getting an evaluation for a liver transplant. This is the beginning of decompensation of the liver. The 5 year survival is about 75%.
Child’s Class C is the most severe form of cirrhosis. The liver is well on its way to failing. A patient should have a transplant evaluation if transplant is what he/she wants. It is end-stage liver disease. The 5 year survival rate is about 50%.”
*Always consult your healthcare provider before making any changes to your diet or medications.
Do you have a different question about hepatitis C? Ask us here!