What are extra-hepatic manifestations?
The term ‘extra-hepatic manifestation’ (also known as EHM) is used to describe various disorders, diseases and symptoms that are thought to be caused by chronic hepatitis infection. The term ‘extra-hepatic’ means symptoms that stem from the hepatitis virus but occur outside the liver.
People with both hepatitis B and hepatitis C can experience extra-hepatic manifestations of the virus. This page focuses on extra-hepatic manifestations of hep C. A Peer Navigator at Help4Hep BC can help find resources and information about extrahepatic manifestations of hepatitis B.
Extra-hepatic manifestations and hepatitis C
Although the hepatitis C virus affects the liver, it can also cause damage to most systems within the body. Extra-hepatic manifestations can develop anytime during a person’s experience with hepatitis C, from the time we contract the virus, to after being cured. In the past it was thought the liver was the only organ affected by the hep c virus. New research into the variety of symptoms being presented by those who have/had HCV has helped identify similarities and patterns in the prevalence of certain types of illnesses, symptoms, and diseases.
Can you have extra-hepatic manifestations show up after being cured?
Yes, many people experience extra-hepatic manifestations after being cured.
Are extra-hepatic manifestations permanent?
The lack of long-term studies on EHM makes it difficult to determine if the symptoms a person is experiencing will be permanent or not. However, many of the extra-hepatic manifestations that people develop can be permanent. However, the resulting conditions or symptoms may be treatable or manageable.
What body systems can be affected by extra-hepatic manifestations?
Extra-hepatic manifestations can be divided into a few different categories of disease types:
- Various types of encephalopathies (diseases that affect functioning of the brain)
- Dermatologic (affecting the skin)
- Renal (affecting the kidneys)
- Vascular and cardiovascular (affecting the heart/veins, heart, and circulatory system)
- Metabolic (for example: diabetes mellitus or insulin resistance)
- Endocrine System and Disorders (for example: diseases affecting the pancreas or thyroid)
- Central nervous system (CNS) diseases (affecting the nervous system, such as neuropathy or multiple sclerosis)
- Autoimmune disorders (for example: Sjogren’s syndrome or essential mixed cryoglobulinemia)
- Connective tissue disorders (for example: rheumatoid arthritis)
Caring for your health while experiencing extra-hepatic manifestations
When a person is living with hepatitis C, regardless of if their hep C has been treated or not, or if they are currently treating their hep C, they may experience extra-hepatic manifestations. The impact of EHMs can be mild to severe and short- or long-term in duration. The first step most physicians who treat hepatitis C take when addressing extra-hepatic manifestations is to treat the active hepatitis C virus. If the virus has been treated, the disorders are treated as they would without consideration of hepatitis C.
While experiencing symptoms associated with extra-hepatic manifestations of hep C, many individuals report disruption in being able to carry out their normal, day-to-day activities. This is especially true of people experiencing pain as a symptom. Many persons with lived/living experience of hep C who also experience EHMs often use different strategies or combinations of strategies to manage their symptoms and increase their comfort. As with many things, strategies are often individualized.
Strategies for managing EHMs may include:
- Medications as determined with their healthcare team (for example using analgesic pain medication, immune suppressants)
- Physical or occupational therapy
- Behaviour/lifestyle adjustments (monitoring and modifying diet, exercise, and rest patterns).
As each person affected by extra-hepatic manifestations of HCV will experience their own combination of symptoms and disorders, and the strategies they utilize to combat them are just as unique.
Accessing medical care for extra-hepatic manifestations
If you believe that you may be experiencing extra-hepatic manifestations of hepatitis C it is encouraged to talk to your primary healthcare provider about what symptoms are being experienced. Your primary healthcare provider (usually a general physician, family medicine physician or nurse practitioner) may choose to refer you to the office of a medical specialist appropriate to your symptoms, such as a rheumatologist, immunologist, or cardiologist if there are concerns about your symptoms.
If you feel like you need the assistance of a specialist, do not hesitate to ask your primary care provider for a referral!
Watch Hep C 101: Extra-hepatic Manifestations
Sources
- Cacoub P, Comarmond C, Domont F, Savey L, Desbois AC, Saadoun D. Extra-hepatic manifestations of chronic hepatitis C virus infection. Ther Adv Infect Dis. 2016;3(1):3-14. doi:10.1177/2049936115585942
- Sherman, A. C., & Sherman, K. E. (2015). Extra-hepatic manifestations of hepatitis C infection: navigating CHASM. Current HIV/AIDS reports, 12(3), 353–361. https://doi.org/10.1007/s11904-015-0274-8
- https://www.medscape.com/answers/177792-3839/what-are-extra-hepatic-manifestations-of-hepatitis-c-hep-c-infection