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Slaying the Dragon

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Sustained viral responders tell how they beat hepatitis C

by Bryan Tutt

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To treat, or not to treat? For someone diagnosed with hepatitis C, that is the question. The correct answer, however, varies depending on each individual’s circumstances.

For those who choose to undergo interferon/ribavirin therapy, the ultimate prize is viral eradication – and the enviable status of sustained viral responder (see “Virus Free, Home Free?” Hepatitis magazine, October-December 2004). It’s not an easy road, but most of those who have made the journey successfully say it was a trip worth taking.

Salah Salim, from Stone Mountain, Ga., a suburb of Atlanta, was diagnosed with hepatitis C in 2003 after she went to a gastroenterologist because of stomach pain. Salim works as a lab assistant and had some knowledge of hepatitis, but she says this was not enough to prepare her for the shock of learning she had the virus. “I needed time to meditate on what was really going on with me,” she says.

Salim says that, based on her biopsy, doctors told her that she had probably had the virus for six to eight years. Her blood work showed that she had genotype 2A. Once she had the facts, it was time to make a decision.

“I weighed everything out,” says Salim. “It’s a slow disease, but still, disease is disease. If there’s something that you can do about it, then of course, let’s do something.”

Salim remembers that the pegylated interferon/ribavirin treatment was not easy. “As much as I would like to say that I want everyone to get treatment, I would never lie about the treatment,” she says. “It’s hard, you know – it is. But you can get through it. I did.” She could tell the depression was getting to her when TV commercials started to make her cry. Her doctor prescribed antidepressants, but Salim says she never had the prescription filled.

She says that staying active helped her through the treatment. “Working really did do a lot for me,” she says, “because I wasn’t sitting around looking at myself as I lost weight. It was therapy for me. Just being out makes a difference.”

Salim says she took her injections on weekends, which gave her a few days to rest. She says she also watched her diet and took milk thistle, and that she continues those practices today.

While on treatment, Salim started a support group, called the Hepatitis Focus & Support Group, which meets twice a month in Atlanta. “Who feels it, knows it,” is the phrase she uses to sum up the bond shared by group members. “Whoever’s going through it, they are the ones who can really tell you about it,” she says.

Salim finished treatment in January 2004 and was still clear of the virus six months later. She thinks the only lasting side effect from the treatment may be some memory loss. She plans to continue leading her support group and to explore other ways to increase awareness about hepatitis C because, she says, “There are just so many of us that walk around and don’t know that we have it.”

Advice and support
Marvin McGee of Oxford, Mass., south of Worcester, didn’t know he had hepatitis C until 2002 when, after six months of testing to find the source of his chronic fatigue, he was finally diagnosed with the virus. After his own research and the advice of his gastroenterologist led McGee to the decision to try combination therapy, the doctor’s staff directed McGee to Schering-Plough’s Be In Charge program, which he says helped him get through the treatment.

The nurses at the Be In Charge help line gave McGee advice on the possible side effects and how to manage them. He remembers that some of their advice, such as drinking plenty of water, made sense while other advice, such as exercising to relieve fatigue, seemed strange at first. “But I tried it,” he says. “When I felt tired, I’d get up and walk a mile and it helped. I felt better.” He says that the help line was available 24 hours a day as a source of support.

The best advice they offered, says McGee, was for him to discuss his side effects – sleeplessness and depression – with his doctor. He also had numbness in his legs, which doctors told him was gout, another side effect of the medication. Despite this, McGee says he did not miss a day of work while on treatment.

McGee finished treatment in November 2003. One year later, his lab tests showed no sign of the virus. Better still, McGee says, he has no lingering side effects: “My gout cleared up and I feel great. I can work all day and come home and do five hours of yard work.”

Stuck with hep C
Judy Tharani is a registered nurse who works in a Veterans Affairs hospital. She was infected with hepatitis C from a needle-stick injury in June 1997.

Tharani, a mother of two who lives in Lombard, Ill., just west of Chicago, says that she began showing symptoms of acute hepatitis infection – nausea, loss of appetite and dark urine – about two weeks later. These symptoms grew worse, and she wound up in the emergency room. Given the choice between interferon monotherapy – ribavirin was not yet on the market – or waiting to see if her body would clear the virus on its own, she chose therapy.

“I was willing to take a 50/50 chance,” says Tharani. “I don’t know if it was actually the interferon or if I would have cleared it on my own. I wouldn’t have wanted to take the other way to see if I would have done it on my own, because I might not have.”
Tharani remembers that the side effects, including hair loss, nausea and chills, were severe. “It was just awful,” she says. “I thought I was going to die.”

She attended a support group while on treatment, which lasted from August 1997 through November 1997. She says she has been tested several times since then and her viral load has been undetectable.

Tharani has felt no lasting side effects, but she had a scare the year after she finished treatment. “I started to get flu symptoms,” she says, “and I was thinking, ‘Oh my God, this means it’s coming back.’ But then it turned out it was just a cold.”

Nurses nursing nurses
Like Tharani, Jackie Boykin of Durham, N.C., is a registered nurse who works for a VA clinic. In fact, it was during her pre-employment physical for the VA that she learned she had hepatitis C. She says she is not sure whether she was infected by a needle-stick injury or a blood transfusion, since she has had both.

Boykin was referred to Duke University Liver Center, where she says her doctor did not recommend starting treatment immediately, since her biopsy and liver function looked good. “But then one day I decided, maybe I want to get rid of this if I can,” says Boykin. “I prayed and I researched and I talked to friends and family and I decided to go through treatment.” One factor that helped her decide was that her genotype, 2B, is considered one of the easier strains of the virus to treat.

For six months, Boykin was on interferon and ribavirin. “After making it through that, I’m virus free now,” she says. “It was a little rough going through treatment, and I had read a lot of horror stories on the internet, but I didn’t have a lot of the symptoms that I read about.” She says she did experience some fatigue, weight loss, hair loss, nausea and sleeplessness. She says she never missed a day of work during treatment, although she did have to leave early once or twice. “I took my injections on Friday night, so Saturday was my day to sleep,” says Boykin. She also took two ribavirin capsules a day, usually with applesauce. She laughs, “I never ate so much applesauce in my life.”

She attended a support group led by Pat Bixby, an R.N. at Duke. “She was and is a wealth of information about hepatitis C,” Boykin says, adding that Bixby also told her about the Be In Charge program. “A nurse called me once a month to check on me and see how I was doing. That was really helpful because you have questions. Even though you’re a nurse, when you get sick, you’re not a nurse anymore. You want them to talk to you and tell you everything.”

Boykin has been virus free for 18 months as of May 2004. She says she occasionally sees patients with hepatitis C, and she tries to give them the kind of encouragement she received from Bixby. “You need to be realistic and tell (people) about the side effects,” says Boykin, “but people need to know – I needed to know – that there are people who responded.”

Eyes on the prize
Dee Lemmon of Woodstock, Ga., northwest of Atlanta, had been diagnosed with non-A non-B hepatitis many years ago and never thought much of it until she went to see a doctor about chronic fatigue in 1999.

Lemmon says that she then learned everything she could about hepatitis C. She says that she had genotype 1B and a low viral load. With this knowledge, she developed her own approach to treatment. “What I did was Infergen (a form of interferon),” she says, “but I did it daily (instead of the usual three times a week). I had an induction of three months of full doses every day and then I went to half doses every day.”

Lemmon says her doctor was a bit surprised to have a patient come in with her own treatment regimen. “He told me I was crazy,” Lemmon says, “but I wanted to get rid of the disease and I wanted to do it right the first time.” Because her insurance would pay for only three doses per week, her doctor asked the pharmaceutical sales representative for free samples to make up the difference.

Lemmon says she wanted to use ribavirin also, but at the time, it was not being sold separately. “I told my doctor that if he didn’t ask too many questions, I could probably come up with it myself,” she says. “I posted on a few message boards on the internet and started asking for leftovers from people who had to quit treatment or had some left. You would not believe the response I got. People from everywhere started sending it to me.”

Her doctor monitored her carefully throughout the course of her treatment, Lemmon says. “My poor doc was so paranoid about my being on so much interferon, he was watching me like a hawk and drawing blood every month,” she says.

“Treatment was no picnic,” Lemmon says, “but it was not as bad as a lot of what I’ve heard. Fatigue was A-No. 1 – the worst thing. I would say I hibernated through treatment because I slept about 12 hours a day. I had a lot of apathy; I didn’t care about a lot of stuff. All I could think about was keeping my eyes on the prize and getting through it.”

Lemmon remained on the treatment regimen for 48 weeks, giving herself shots every day. “My legs looked like a checkerboard,” she says. “It was quite attractive.”

While still on treatment, Lemmon co-founded HEALS of North Georgia. She is currently the president of the support group organization. Having been virus free since 2000, she says that it is important for sustained responders to show others in the hepatitis community that there is hope.

“In a way, hepatitis C was the best thing that ever happened to me because it woke me up,” Lemmon says. “It made me more aware about myself, about other people, about mortality and of the reason that we’re really here, which is to help each other.”