Kerri: Hello everyone, and welcome back to Hep C 101. My name is Kerri and I am joined by Daryl, and today we are going to be talking about extrahepatic manifestations. So Daryl, what are extrahepatic manifestations–other than a very long phrase to say?

Daryl: [Laughing] It is a mouthful, for sure. Extrahepatic manifestations are basically problems, issues, conditions that that occur outside of the liver, and are caused by hepatitis C in this case. There are a number of them, we’re not going to go down the full list today, but they are a thing, there is science to support it. Many people have had and will have experience with extrahepatic manifestations.

Kerri: So, what kinds of things are associated with, as being, extrahepatic manifestations? Like what kinds of things happen outside of the liver that can be linked to hepatitis C?

Daryl: Well, Kerri, things like neuropathy, there are skin conditions, issues that people can face and deal with. There is insulin resistance, and a whole range of problems that that can arise and diminish people’s quality of life and cause pain.

Myself, I actually was afflicted with neuropathy for a number of years. I believe I had it before I was diagnosed with hep C, and when I treated with interferon, it exacerbated it made it much worse. That was one I definitely have personal experience with and a lot of people who have had hepatitis C have experienced neuropathy.

Kerri: So we know there’s a wide variety of, of issues that can be caused by extrahepatic manifestations. What are some ways that the the symptoms can be managed, or the–or the underlying condition that has been caused by hepatitis C can be managed?

Daryl: Well, one of the problems with extrahepatic manifestations is they are not well known by healthcare providers. It’s just not an area where you will find a doctor, or very many doctors, that are well versed or understood, understand, well, these extrahepatic manifestations.

So typically what ends up happening for people, and I experienced this myself as I was referred to different specialists. And again, they were not necessarily specialists that understood what caused my particular condition. Yeah, it can be problematic, but… but certainly talking to your primary about it, and seeing a specialist that that has some understanding of extrahepatic manifestations is good, but may not be possible. That’s something to keep in mind.

But I think that if people make an effort to inform themselves, and there is some good literature online, and certainly you can call our helpline, and we can, we can talk about it in more depth.

Kerri: So we know that a lot of the issues that might be associated with hepatitis C can improve once someone has treated their Hep C, does that happen with extrahepatic manifestations? Sometimes, always, never?

Daryl: [Laughing] Well, it’s–it depends on the person and the condition.
I can tell you that in my own case, my neuropathy did improve, it’s not gone away entirely. But after seeing a very good neurologist, and some, some, you know, workups with them, and some testing, we were able to find a simple way of reducing the pain that I have from neuropathy.

Yeah, some of these things will resolve after successful treatment, there’s no question about it. And they may take a period of a couple of years. And some, you know, I’m not suggesting that people should wait till something resolves like in the case of insulin resistance or diabetes or some of these conditions you need to have care,
you know, to deal with them and, and, you know, there are lots of remedies for different conditions. But I think that what, what people have to do is just be persistent, really, in finding the right physician.

Kerri: So if people are looking for more information on what they might be experiencing or extrahepatic manifestations in general, what, where do you suggest that they go?

Daryl: Well, they can certainly call our helpline or text our helpline, we can help to explain in more detail and refer you to places where you can do more research of your own, and I certainly recommend that. There is a fair amount of literature on extrahepatic manifestations and there have been studies over a period of several years.

Kerri: So if people want to reach out to you or another peer at the helpline, they can contact you at what number?

Daryl: 1-888-411-7578. And remember, you can text us or call us at that number. And thanks.

Kerri: Thanks, everyone. We’ll talk to you next time.

Daryl: Take care.