Several different people sit together in a circle, like in a support group. All have a spot on their body to indicate that they are experiencing pain there.

Extrahepatic Manifestations: Our Advocates Share Their Experiences

Not just the liver: Did you know that hepatitis C can affect the skin, muscles, joints, and other organ systems? In addition to the symptoms of hep C, many patients experience extrahepatic manifestations (or EHM). To better understand the realities of dealing with hep C, we asked our advocates to share their own experiences with EHM. Read more about their experiences, or comment below to share your own story!

From Connie

"I have experienced extrahepatic manifestations of hepatitis C. I have experienced autoimmune disorders like hypothyroidism (Hashimoto’s thyroiditis) and vitiligo, along with joint and muscle pain."

From Karen

"I live with chronic inflammation, pain, and fatigue. My doctor helps me use natural and holistic remedies, such as physical activity, nutrition, and meditation, to treat them."

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

From Rick

"I had brain fog from 2007 onward, advancing into hepatic encephalopathy within a year, and it became medically uncontrolled when I was 29. I wasn't even aware I had cryoglobulinemia until after I'd had my transplant in December of 2016. Ascites was my least favorite extrahepatic manifestation, probably because of the risk of sepsis. My edema and ascites, would manifest mostly in my limbs, so my ankles and legs would swell up like I was wearing a cast. The diuretics managed it for a while, but they produced another reaction wherein my liver could no longer regulate my electrolytes which would cause intense muscle spasms for potentially hours. Another EHM I experienced was esophageal varices, which are usually caused as a result of portal hypertension. The veins in the esophagus burst, and cause internal bleeding."

From Susie

"I have experienced much muscle and joint pain over the years. In fact, before I was diagnosed, I continually had arthritic issues that my primary care physician was not able to explain. I was finally sent to a rheumatologist and after many tests to rule out the known causes of muscle and joint pain, she told me that the antibodies from hepatitis C get into the joints and cause swelling and pain. Rheumatoid arthritis is more prevalent in hep C positive patients. However, a person with hepatitis C may have symptoms that mimic rheumatoid arthritis because the virus often causes arthralgia (joint pain)."

While extrahepatic manifestations can be scary, the good news is that many can be prevented or treated by curing hepatitis C! Click here to learn more about hep C treatment, and click here for financial resources.

Join the conversation

Please read our rules before commenting.