The Most Frustrating Symptoms of Hepatitis C: Stories from Our Community

Managing hepatitis C (HCV) symptoms can be overwhelming at times. Both those living with HCV (not yet cured) and those who have been cured experience a wide range of physical and emotional symptoms. They range from joint pain and fatigue to hair and appetite loss.

In a recent Hepatitis C In America Survey, we explored the symptoms that most impact people with hep C. To further highlight the toll that HCV symptoms take, we have also shared experiences from HepatitisC.net community members below.

It is tough to live with fatigue

"Feeling tired, no stamina, and feeling like crap." – HCV community member

"Fatigue. I was the little engine that couldn't." – HCV community member

Fatigue was by far the top symptom reported by those who completed the survey. Many community members also expressed that fatigue and exhaustion are challenging to live with.

81 percent of cured community members report fatigue
82 percent of not yet cured community members report fatigue

Insomnia may also play a part in fatigue. About 60 percent of both cured and not yet cured respondents said they had trouble sleeping.

Aches and pains are frequent

"Feeling tired all the time and abdominal pain." – HCV community member

"Liver pain. It's a common symptom, yet it's rarely talked about." – HCV community member

There are different kinds of aches and pains connected with HCV. Some survey respondents mentioned they deal with muscle aches and liver pain on a regular basis, while others mentioned they often experience leg cramps and joint pain.

62 percent of cured community members report muscle aches
56 percent of not yet cured community members have had abdominal pain

Itchy skin and rashes are a burden

"The intense itching is driving me nuts!" – HCV community member

More than half of both cured and not yet cured survey respondents said they have battled skin problems. When asked what should be included in a commercial about hep C, many said itching.

57 percent of cured respondents have had itchy skin
59 percent of not yet respondents have had itchy skin

Sluggish and fuzzy thinking is difficult

"Fog brain, digestive problems, and irritability." – HCV community member

"Fatigue, itching, and fog brain." – HCV community member

"For me, it was the fatigue and brain fog." – HCV community member

Many community members described brain fog as the most frustrating hep C symptom. More than half of both cured and uncured respondents reported having cognitive difficulties.

Digestive problems and bloating

"Jaundice, fatigue, GI trouble. Like a bad case of the flu. The GI trouble was a recurring theme with the hep C." – HCV community member

"Big belly!" – HCV community member

More than 4 in 10 respondents said they have experienced digestive problems, nausea, flu-like symptoms, and appetite loss.

Cured HCV community members feel symptoms are more controlled

Fortunately, getting cured of hepatitis C can help alleviate many hep C-related side effects and symptoms. Cured community members were more likely to say their symptoms are under control with their current treatment plan when compared to not yet cured respondents.

85 percent of cured respondents feel HCV symptoms are under control with their current treatment plan, compared to 33 percent of not yet cured respondents

The 2020 Hepatitis C In America Survey was conducted online from April through August 2020. The survey was completed by 190 people classified as "Cured" (no longer having the infection) and 217 classified as "Not Cured" (still infected).