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Hepatitis C Treatment: Fear of Side Effects

Hepatitis C treatment can be transformative

Hepatitis C treatment can be transformative

When faced with hepatitis C treatment for the first time, most people have some anxiety or apprehension. Some people have a lot of it, so much so, that they might lose perspective. For instance, I recently talked to someone who was reluctant to take hepatitis C drugs because she was afraid she’d lose her hair. Her looks are important to her. I reminded her that ascites, jaundice and hepatic encephalopathy are quite unattractive too. Then there are the 53 daily deaths from hepatitis C; more we count premature death from heart attack, stroke, and cancer.

Of course, when it was time for me to undergo hepatitis C treatment, I was no more immune to fear of side effects than the next person was. In 1997, I had never spoken to another person who had undergone hepatitis C treatment. This was before there were support groups and chat rooms. All I had to go on was what I read in the prescribing information.

The side effects I feared most were mood alterations—depression, irritability, thoughts of suicide and the like. I had a history of depression, and didn’t want to expereince that ever again. A week before my scheduled start date, a well-meaning friend called me, deeply concerned. There was a famous local case about a man who had undergone interferon treatment for hepatitis B. Apparently he killed his wife, then himself.  My friend told me that some patients experience nightmares and personality changes. I thanked her for the concern but privately dismissed it.  I was going to be different.

Although I thought I had brushed off her warning, the reality was that I had merely buried it. The night of my first injection, I prepared for battle. Next to my bed were blankets, pillows, and socks for chills, crackers for nausea, water and acetaminophen (Tylenol) for fever and discomfort, and the phone for emergencies. I injected the medication into the soft fat below my belly button, and then my husband and I went to bed. He fell asleep in his usual way—as soon as his head hit the pillow. I tossed and turned, waiting for side effects and for my life to change.

My friend’s forewarnings must have been lingering closer to the surface than I had initially believed. I drifted in and out of sleep, dreaming about Jekyll and Hyde. I’d wake up haunted by my fears of a medication-induced transformation. What if I killed my husband and then myself? The fear was intense but logic took over telling me that it was very unlikely that I was going to turn into a homicidal psychopath after one injection. My ridiculous imagination and capacity for drama amused me, and I burst out laughing. Laughter chased away fear, and in that moment, I was liberated from my inner tormentor. I let go of anxiety and fell into a deep sleep.

A few hours later I woke up with flu-like symptoms. I alternated between throwing off bedcovers and clothes to piling on blankets and wearing socks on my hands and feet. I took a low dose of Tylenol and slept fitfully. In the morning, I had a minor headache, but otherwise felt fine. My husband, however, woke up with a migraine and couldn’t get out of bed. Relieved that I hadn’t murdered him in the night, I ended up caring for him that day—cooking, cleaning, walking the dog, and occupying myself with the usual Saturday chores.

I’ve done three hepatitis C treatment, worked at Stanford Medical Center with patients on treatment, and have helped countless others. Here is what I’ve learned:

  • Support is essential. (The Hep Forums offers a great place for support.)
  • Treatment is tolerable, and you don’t have to be exceptional to get through it.
  • Most side effects are manageable, particularly if you deal with them early and work with someone who knows how to help you manage them.
  • Although HCV treatment isn’t easy for everyone, most people find it isn’t as difficult as they imagined it would be. Generally, the hardest parts are intermittent, brief and manageable.
  • After treatment is completed, you eventually get your life back, even though it takes some time.
  • Humor can make almost anything bearable.

Lucinda K. Porter, RN is the author of two books, Free from Hepatitis C and Hepatitis C Treatment One Step at a Time. She also blogs at HepMag.com.

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  • Rick Brewster July 3, 2015, 4:31 PM

    Dont know your age when you started. I was 64 and I was sicker than a dog on the Interferon/Ribiviran schedule, multiple episodes of throwing up. Such as every time I tried to walk up the driveway from the mail box (about an 1/8 of a mile). Hair loss (which did come back when it was over) and weight loss (which didn’t break my heart but unfortunately it came back also) and yeah, the flu, 24/7…for a year. And it didn’t work anyway. Now, and this is an important now. I would have done it again, IN A HEARTBEAT, if there was a reasonable chance it would have worked the second time!!! I am currently doing the Harvoni thing along with Ribiviran. Still some nausea but nothing like before (wonder if the Ribiviran wasn’t contributing to the sickness the first time) and for a much shorter time. It’s all a matter of perspective, how sick are you willing to be to live. Me, I’m a fighter and I will put up with anything for the chance to be an old man, I mean a really old man. If you are on the fence but worried about side effects my advice is DO IT! Unfriendly treatment regimes suck, but the alternative is worse! And cancer patients have it a lot worse, Interferon on steroids. Thank you for your site, I got a lot of useful information from it.