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HIV, Hepatitis C and You

A Guide for Coinfected People

December 2011

Hep C Treatment

When to Start

The answer to the question, "When should I start hepatitis C treatment?" is a lot like the answer to the question, "When should I start HIV treatment?" In both cases, most experts tend to agree that earlier is better: The sooner you can get the virus under control, the less likely it is to cause long-term damage.

In the case of hepatitis C, starting treatment may be more urgent if you have liver damage, especially if that liver damage is getting worse. The type of hep C you have can also play a role, as we noted here.

Regardless, the choice to start treatment is one that you and your health care provider should reach together. It's important that you understand all of the benefits and risks before starting treatment, so you'll know what to expect when you begin. You'll also need to be sure you're ready to commit to treatment, since taking every dose is crucial.

Treatment Timeline

When you start HIV treatment, it's usually a lifetime commitment, because HIV meds can't cure HIV. But hep C treatment is different: It always has a beginning and an end. Doctors usually prescribe a single "course" of hep C treatment for anywhere between six and 18 months, depending on how quickly the treatment works against the hep C virus in your body. (In the future, newer, more powerful meds may help shorten the time you need to be on treatment.)

While you're on hep C treatment, you'll get periodic blood tests to check your hep C viral load. The goal is to get your hep C viral load to "undetectable" (meaning your hep C viral load is so low that our current tests aren't able to spot the hep C in your blood) as quickly as possible, and then keep it there. Keep in mind that it may take longer for people coinfected with HIV and hep C to be cured of hep C compared to people living with hep C alone.

Three months into your hep C treatment, you and your health care provider should have a pretty good sense of how well it's working. If it seems to be going well, you'll continue treatment for at least another three months (for a total of six months), and possibly for several months longer depending on your hep C viral load.

Once you've completed your course of hep C treatment, you'll want to keep getting checkups to see whether your hep C viral load remains undetectable. If six months pass with no sign of hep C in your body, you'll be told you have a "sustained virological response." This means there's no hep C left, and you're cured.

Keep in mind that, even if you're cured of hep C, you may still have leftover liver damage that will make it important to lead a liver-healthy lifestyle from here on out. And be sure to visit with your hep C specialist at least once a year, especially if you're still engaging in any activity that puts you at risk for hep C. It is possible to be infected with hep C again even though you've been cured of an infection in the past, so continue to get tested! (Remember: If you become infected again, you will probably feel no symptoms.)

Take Every Dose!

The most important thing to remember about hep C treatment is that you should never miss a single dose. This can be hard, especially because the side effects can sometimes be very difficult to handle (more on that in a moment).

The strength of hep C meds begins to drop very quickly if you don't take every dose. That increases the risk that your treatment will stop working, or that your hep C will become resistant to it.

So stay focused! Take every pill and every injection on time. If you don't think you'll be able to do it, now may not be the right time for you to be on hep C meds. Know your limits, be honest with yourself and your health care provider, and seek out whatever help you need to get to a place where you can handle the commitment.

Treatment Regimens

As of late 2011, there's basically one type of hep C treatment regimen for people coinfected with HIV and hep C. A single course of treatment usually involves taking these three different types of medications for six to 18 months:

    "The hep C treatment was not a walk in the park, but it was also not as bad as I read about online."

    -- Kevin Maloney, diagnosed with hep C in 2010

  • Peginterferon alfa (also called "pegylated interferon," "interferon" or just "peg").
    It must be injected under the skin with a tiny needle once a week. (This isn't like getting a flu shot or getting blood drawn; it's just a small prick into the skin that you can give yourself.) Two different companies make and sell peg drugs; one drug is called Pegasys, the other is called PEG-Intron.
  • Ribavirin.
    This is a pill you take by mouth twice a day. Many companies make ribavirin, so it can be known by any number of brand names, including Copegus, Rebetol, Ribasphere, Vilona and Virazole.
  • Protease inhibitors (or "PIs").
    Approved in 2011 specifically for people with hep C type 1, these are pills you take by mouth three times a day. There are two PIs approved specifically to fight hep C: Incivek (also known as telaprevir) and Victrelis (also known as boceprevir). PIs for hep C are different from the PIs you might take to treat HIV, so a PI you take for hep C will not be able to fight HIV, and HIV meds don't work against hep C.

Since PIs for hep C are still pretty new, we're still learning about their effectiveness and safety in people with HIV. So talk closely with your health care provider before considering them.

Side Effects

One of the most frustrating things about hep C treatment is that it may cause uncomfortable side effects. Some of these side effects can really disrupt your life. Unfortunately, we have few treatment options for hep C right now (though many are now in development), and the alternative is not much of an alternative: If left untreated, hep C may eventually cause life-threatening liver disease, which would be worse than the possible side effects of treatment. So be sure to talk with your health care provider and prepare yourself!

Common side effects of hep C treatment may include:

  • Bone marrow suppression, which can result in certain blood disorders, such as anemia (which can make you feel tired)
  • Depression, negative feelings or anxiousness
  • Fatigue
  • Flu-like symptoms (including headache and nausea)

Most of the time, these side effects can be treated and managed. But if they're just too much to handle, you can always talk to your health care provider about stopping treatment completely. Don't skip doses, because that'll just reduce the chances of your treatment working. And don't completely stop your treatment without first discussing the matter with your health care provider. Instead, work with your health care provider to come up with a plan to stop your hep C treatment and try again in the future.

Pregnancy Concerns (for Women and Men)

"It's very, very important that people not get pregnant during their treatment for hepatitis C, because the ribavirin is such a powerful producer of birth defects."

-- Dr. Kathleen Clanon, Clinical Director, Pacific AIDS Education and Training Center

Don't take hep C treatment if you or your partner are pregnant! Ribavirin can cause severe birth defects, and interferon can cause loss of pregnancy. Tell your health care provider if you are:

  • a woman who is pregnant, or if you think you might get pregnant within the next six to 12 months
  • a man who is about to become a father, or if you think you might get a woman pregnant within the next 12 months
  • a man who may have sex with a pregnant woman within 12 months

Your health care provider will either adjust your treatment regimen or hold off on hep C treatment entirely until after the baby is born, depending on how healthy your liver is.

The risks of a woman passing hep C to her baby during birth are small. However, it's riskier among women coinfected with HIV and hep C than among women with hep C alone. This doesn't mean it's automatically a good or bad idea to have a baby; it just means you should be sure to talk with your health care provider beforehand, because having a baby when you're both HIV positive and hep C positive is a big deal and requires careful planning.

Drug Interactions

Hep C meds can interact with other medications that you may be taking. This is especially true for many HIV medications. If two drugs interact, it can cause one drug not to work as well as it should, or it can cause potentially dangerous side effects.

In addition, these older HIV medications are not safe to take if you're on hep C treatment that includes an interferon or ribavirin:

  • Retrovir (also known as AZT or zidovudine)
  • Combivir (which contains Retrovir)
  • Trizivir (which contains Retrovir)
  • Videx (also known as ddI or didanosine)
  • Zerit (also known as d4T or stavudine)

For this reason, you and your health care provider will want to carefully plan out your treatment. Be sure to tell her or him about every drug you're taking, whether it's from a prescription or it's bought over-the-counter (like painkillers). The same goes for vitamins and supplements. This will help your health care provider make any adjustments she or he needs to make to keep you healthy, and to keep both your HIV and hep C at bay.

"If I'd been able to take care of myself and focus on my own health, rather than trying to have all these other balls in the air, I think the two courses of hep C treatment would've been a lot more successful."

-- Kay D., diagnosed with hep C in 1995

What If Treatment Doesn't Work?

Sometimes, despite all your efforts to keep your liver healthy, Hep C Treatment and even though you may have taken a full course of your hep C meds without missing a dose, hep C treatment may not be able to cure you of your hep C infection.

If this happens to you, remember: It is not the end of the line. You may be able to wait until new hep C meds are approved, or even join a clinical trial that is studying a medication in development. A number of such meds are now in the pipeline, and may be approved over the next few years.

Depending on why your treatment didn't work, you may be able to try the same regimen again. The most common reasons for this may be that the side effects were too hard to handle the first time around, or you just weren't ready to have hep C treatment be a part of your life (and thus you missed doses).

In the worst-case scenario (advanced cirrhosis or liver cancer), your doctor will ask you to consider a liver transplant. This is a major surgery that would only be used as a last-ditch effort if you have life-threatening liver damage. It would not cure you of hep C. (The waiting list for such transplants is very long, so there's no guarantee you'd be able to get one.)

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Copyright © 2011 Remedy Health Media, LLC. All rights reserved.

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