Hep C and Hives
Last updated: April 2022
Hepatitis C is a life-changing diagnosis, especially relating to direct-acting antiviral treatment, and curing of the virus. Once cured, many people expect a return to excellent health and are surprised that they still experience symptoms associated with having an active virus. Some experienced things that made no sense in terms of how they experienced the virus. Some symptoms were completely unrelated to the liver, making determining the root cause difficult. For those new to the online hep C community, a bit of backstory is necessary to explain my experiences of post-cure ailments and to share my experience with a specific ailment linked to having had the hep C virus...
My hepatitis C diagnosis
When I was diagnosed with hepatitis C at the age of 18, the world was supposed to be my oyster. I was young, and up until then, very healthy and had big plans for my future. My experience with the diagnosis was abysmal and I was left with no education, no options, nothing. I returned to my hometown shortly after diagnosis, as I felt I may be able to find more help in the community I knew.
Extrahepatic manifestations of hepatitis C
Over time, I did learn about the virus and how it affects the body while still active. I learned that my options for treatment were painful and scary, especially to a newly fledged adult who was in a vulnerable state. I was never told of the lasting symptoms or associated diseases and illnesses that can come as a result of positive HCV diagnosis.
Fast forward several years and the hepatitis landscape had again changed, and for the better! Once the miracle of being cured became my reality, I became much more invested in learning about the lasting illness and associated diseases. The opportunity to be employed in the field of blood-borne illness education and healthcare navigation further enhanced my education on these issues. "Extrahepatic manifestations of hepatitis C" (to save my fingers, referred to as EHMHCV hereon - try saying that ten times fast!) is a blanket definition for ailments that are believed to be related to having HCV or are believed to have occurred because having HCV increased susceptibility. Many believe that the EHMHCV is exaggerated or anecdotal, but the prevalence of certain ailments is worth noting.
Cured, but a new, itchy enemy surfaces
Post-cure was not the sunshine and rainbows experience I believed it would be. Although the treatment itself was unnoticeable and painless, I began to regularly experience a few different health issues I hadn’t experienced before. The most annoying (and itchy) of these was hives. Most folks have a general idea of what hives are, but for those not well-versed in the variety of incredibly uncomfortable skin conditions, I’ll share a brief definition:
Hives (Urticaria) are red painful, itchy raised welts that appear on the skin. They can be caused by many things but speaking generally is the result of a skin reaction. The welts are varied in size, shape, and location on the body. To be considered chronic hives, the condition must be persistent for over 6 weeks and have to recur over months or years.1
The connection between hives and hepatitis C
Having hives once every several years is the experience of most people. I was the lucky recipient of chronic hives lasting initially for almost a year, and after that occurrence, the frequency has varied with no predictability. The primary course of treatment is taking antihistamine medication. I had never had skin problems before and now I had them in spades. I did not find a magic hive cure. To my surprise, I did find research papers and published scientific articles discussing HCV and the prevalence of urticaria pre, during, and post-treatment.
My doctors don't associate hives with hep C
More and more research is being published regarding this phenomenon. As a result, an increasing number of healthcare professionals are being educated on EHMHCV. In my life, I have had to self-advocate and educate many healthcare workers on hepatitis C and the variety of systemic issues that are evidenced as EHMHCV. I’ve gotten many an eye roll or received a curt warning to not undermine the infallible intelligence of physicians. I kindly remind those specific doctors that the primary principle of scientific inquiry and discovery is adapting and changing beliefs when presented with peer-reviewed, empirical data. It was uniquely discouraging and invalidating to have a doctor invalidate your experiences and knowledge.
Luckily, I have a thick skin (probably from the hives too!). I realized I can use that ‘thick skin’ to advocate, bring education, and promote awareness within the hepatological medical community. I hope my experiences with discovering the not-so-pleasant diseases and symptoms post-cure can help others who are experiencing unpleasant, painful, or disabling afflictions can find answers and relief.