Kerri: Hi, and thanks for joining us for the final for now episode of Hep C 101. Once again, I’m Kerri, and I’m joined by Daryl, and we are from the Pacific Hepatitis C Network. Daryl, what are we talking about today?

Daryl: What are we talking about? We’re talking about post-treatment, after cure, what to expect for people that have finished treatment, next steps, and yeah, after cure!

Kerri: So alongside that, what happens after Hep C is treated? Is it that simple for everyone, boom, that’s it, you’re done?

Daryl: Well, after the end of treatment, so that would be when you finish taking the pills for the treatment, in 12 weeks, you should be tested again for copies of the virus. And that’s, that’s basically to confirm that the treatment has been effective and has cured you. And that’s called sustained virologic response. And there will be, typically, because nearly everybody is cured, there’ll be something like undetectable will be indicated as undetectable virus.

Kerri: So what happens after treatment? Where do you go from being done?

Daryl: Well, it really depends on you know, your own situation, there is no singular experience that anyone has. For people that may have advanced liver disease, that’s very different than somebody who does not. Or, you know, there are people that as we’ve discussed in an earlier video, who have problems with extrahepatic manifestations that are caused by living with Hep C over time, and those things can, can very much continue. In general, I think, and my opinion, and that’s shared by others, is that there really should be a follow-up in people who have successfully treated and cured.

Kerri: So sometimes people will have finished treating their Hep C and still not feel “better”. so to speak. Is this a common experience that people have? And what can people expect when they’re done treatment?

Daryl: Well, I can’t present any data to suggest it’s common. But I can tell you that it’s something that that, that we’ve heard from people, some people, it’s really hard to know, just, you know, what percentage of people experienced what, but there are some people who will say, you know, three months, six months, a year after treatment, that they are surprised they don’t feel better, that’s probably related to the effect of living with a virus over time, it could be entirely unrelated to the virus at all. It could just be something that that occurred, while a person, you know, was before they treated, while they were treating, after, it’s really hard to know. But it does speak to an important issue, which is, I think, that people need to follow up and make sure that person who’s providing their care understands that they have treated for hepatitis C, and that, and also that they have, you know, that they let people know, the physicians and, and the care providers what, what length of time, they may have lived with hepatitis C, because that appears to play a role

Kerri: Are the issues that people face after treating their hep C something that doctors are generally knowledgeable about? Or will people have to be providing information about, you know, about what people might experience after treatment to their doctors?

Daryl: Well, that’s, that’s a really good question, Kerri. And the answer is somewhat disappointing, because probably your primary care provider is not going to understand a lot about hepatitis C, and may not understand anything at all about extrahepatic manifestations. So it can be tricky. There’s no question about it. And typically, people will, as mentioned in the video we did on extrahepatic manifestations, people go from one specialist to another, you know, seeking out answers, if it isn’t readily apparent, and some basic blood testing and lab work like diabetes or something, something where it’s, it’s in black and white and can be found easily. It’s, it’s tricky.

We’ve certainly heard a lot over the years of people being dismissed. And this is something that’s familiar to some people is, is that general dismissal. You know, it’s in your head or you know, you’re not really sick. Well, the thing is, is probably the real issue is maybe they just it hasn’t been found what the problem is stick, stick it out. I mean, persist. Don’t be disappointed if you don’t get the answers right away, because it can, it can take time.

And I, you know, I can tell you that from personal experience as much as I can from hearing from hundreds, if not 1000s of people about this, you know, Kerri, one thing that I have to say is that I believe most people who treat successfully, meaning they go on to be to be cured of hepatitis C, will go on to greatly improved health and general wellness, I think the thing is, is that in our work and peer support and navigation, we don’t necessarily hear from those people, they just continue on with their life. And because, you know, I mean, that’s understandable. So, you know, without any clear data to support how many people are dealing with issues post-treatment, it’s just impossible to know, I’m certainly not aware of any good information, good study or data in that area. But I certainly wouldn’t discourage people from, from, you know, being, you know, getting treatment and being cured of hepatitis C, I have zero regrets. And I do have some, some issues that I’m dealing with, because I lived with hepatitis C for four decades, I think, and all the more reason why why people should get tested, and treated and, and do it earlier. If you’re certainly younger, and you think that you have been exposed at some time, to hepatitis C, get tested and get it treated.

Kerri: So I think too, one thing that people certainly can do if they’re not sure if what they’re experiencing after treating their hep C, or during treatment, or before treatment is contact our helpline for information and advice and to kind of work through processing your thoughts and what you’re experiencing with a peer navigator, who are certainly available to help you just figure out what’s going on. So Daryl, how can people reach out to the helpline?

Daryl: Well, we have a toll-free number that’s 1-888-411-7578 and you can text us at that number as well. And we can talk.

Kerri: And as well you can find us online at PacificHepC.org. And while this is our final episode of Hep C 101 for now, we will be back with something new in the Fall. So keep watching our feeds and stay tuned.

Daryl: Bye everyone.

Kerri: Bye, everyone!