HCV/HIV Co-Infection III: A Patient's Perspective
Editor's note: Gerry Moreno first wrote for Positively Aware about living with hepatitis C virus (HCV)-HIV co-infection in September/October 2001 and again in March/April 2002. Last year he underwent a year-long treatment for hepatitis C and kept a journal from which this article is taken. The first part of this story details what he felt as he underwent therapy, and the second part relates how he feels now, along with his advice for other people living with these two viruses.
That Was Then
Living with HCV/HIV co-infection is like preparing a three-course meal. Not only do you have to learn the ingredients of each dish (HIV and HCV), but also the preparation (life-style changes) and of course the clean-up (which would be treatment). I feel as if I have been preparing this meal for the last 20 years, as the recipe keeps changing, and more ingredients must be added. I was hoping that one of the main courses would be completed, and the dishes put away, but that doesn't seem to be the case.
Bette Davis once said, "Fasten your seat belts, it's going to be a bumpy night," and that is exactly how I have been feeling on HCV treatment. I started treatment in January of 2002, after many months of preparation and meditation. I decided that everything else in my life will take a back seat, and treatment would become my priority for this year. I wanted to give treatment my best shot. I feel that mental preparation, and being aware of the difficulties that treatment can present, is the most important factor to a successful course of treatment. My mantra for this year is "One Day at a Time" and I am relying heavily on my recovery program and my higher power for the strength and courage to complete this course of treatment.
The therapy for chronic hepatitis C has evolved steadily since alpha interferon was first approved more than 10 years ago. At the present time, the optimal regimen appears to be a 24- or 48-week course (depending on the HCV genotype) of the combination of pegylated alpha interferon and ribavirin. My genotype is 1A, so the course of treatment is 48 weeks. That includes one injection per week (under the skin) plus ribavirin (pill) at 400 mg two times per day.
I decided to give myself my injection on Fridays, so that I would have two days to recuperate before returning to work the following Monday. Six hours following my first injection, I started to feel all the classic side effects that are associated with interferon therapy. These included flu-like symptoms such as fever, headaches, nausea, muscle and body aches, loss of appetite, and fatigue. I remember waking up in the middle of the night and thinking, "Oh, my God, now I know what they are talking about," because it felt like the flu, but was more intense.
During the course of the weekend I stayed in bed, curtains drawn because the sunlight hurt my eyes, and slept. I started to feel better by Sunday evening, but did not return to work until the following Tuesday. During the week that followed I actually felt quite good, and continued my life as I normally do (work, gym, and hobbies), and I remember thinking that maybe this will not be that bad, but I spoke too soon. I consider myself an optimist, but the weeks that followed tested my limits.
After the second injection I was bedridden with the usual side effects, the only difference was my nausea had increased, my energy level decreased, and I had shortness of breath. I recognized the latter two symptoms as potentially being anemia, so I made an appointment to see my physician. After a series of lab tests I was diagnosed with anemia (no surprise), and also lactic acidosis (mitochondrial damage), which was a big surprise. All medications were immediately stopped, and that included both my HIV and HCV treatments, and I started the treatment for anemia (Procrit). I remember feeling like a failure, and got very depressed because I thought that I would not be able to re-start HCV treatment again, but three weeks later I re-started peg-interferon without the anemia-causing ribavirin.
During the following month (February) I was doing fine, sans HIV medication and ribavirin, and my first HCV viral load confirmed that. My viral load dropped from 550,000 IU to approximately 40,000 IU, and that was without the addition of ribavirin. We re-introduced ribavirin back into the treatment plan a month later at a lower dose of 600 mg a day, and a month after that at 800 mg a day. I'm tolerating it nicely today. In fact, I only need to give myself Procrit when needed, and that hasn't happened in a while.
During the month of March I was beginning to get used to the routine, and side effects, when I got an urgent call from my doctor. He asked me if I wanted to hear the good news first, or the bad; and I chose the good first. My HCV viral load came back at undetectable (eight weeks), but my white count is very low, and I either need to lower my interferon dose (not an option), or begin Neupogen (which stimulates production of white blood cells). I chose the Neupogen, and currently give myself two injections per week. For a person who has 12 years of sobriety from injection drug use, I am reminded everyday how far I have come, and how grateful I am for the support my recovery program has given me.
As I am writing this article I am at week 27. Everyday is a new experience, and everyday brings new surprises. I am responding very well (still have undetectable HIV at six months) and have yet to re-start my HIV medications. I hope to stay off them during the course of HCV treatment.
My mental and emotional health is like a roller coaster. I did not want to go on antidepressants, and waited until the very last minute to do so. I am discovering that whatever dysfunctional behaviors you may possess, they are magnified on interferon therapy. I belong to a support group, have a therapist, and am surrounding myself with love, especially from my partner, who bares the brunt of my emotions.
This Is Now
My treatment goal was to land on the moon; I didn't quite get there, but I know that I picked up a few stars along the way. This is how I feel, today, about my treatment experience. If you had talked to me a few months ago, my answer would have been quite different.
I responded to treatment quite well; my HCV viral load went to undetectable levels within three months and my liver function tests were perfectly normal. With every passing month my hope for clearing the HCV virus grew stronger, as I became more convicted toward completion. At the end of treatment I continued to be HCV undetectable, but I was also feeling a variety of emotions. This was the hardest obstacle that I have ever endured in my life. This experience taught me "one day at a time" much better than many of my recovery experiences. I was elated and exhausted at the same time, but now the next stage of treatment was about to begin: the wait.
The following 60 days, after treatment, went very well; I even continued to stay off all my medication. I had stopped my HIV medication due to a contraindication with my HCV treatment. Since I have been taking HIV meds since the early days of AZT, to be completely drug free was a treat.
After 30 days I re-started HIV meds without any difficulty. Everything was looking great, and I was trying not to get my hopes up, but I could not help it when all my liver markers were perfectly normal.
At 60 days post-treatment everything continued to look good and my hopes continued to strengthen, even though I tried not to think about it. Then the phone call came. Everything that I had visualized, everything that I had hoped for, ended with eight words, "You relapsed. Your HCV viral load is back."
When I heard those words I got such a stomach ache that I could not speak. I was in shock, and the disappointment that followed was nothing that I had experienced before. I was at work, so I had to excuse myself and take a walk around the block, and cry. I know that I am at fault for having expectations, but I could not help it. Everything looked so good! All I wanted to do was scream out to my higher power, "What did I do wrong, why did you let this happen?" So I did, down an alley; loud enough for a lady to open her window and ask if I was all right.
Her words felt so comforting, and I felt so safe, that I spent the next ten minutes sobbing. I kept repeating "What did I do wrong" and you know what, I could not think of anything. I am so grateful that I gave treatment 150 percent, because if I hadn't the guilt would be over-powering, and I would be beating myself up. When I returned to work I felt numb and I shared the information with my co-workers, and I received so much support. I am fortunate that I work in such a supportive environment; and this taught me that having a strong support system is crucial before, during and after treatment.
The weeks that followed were filled with many emotions, but the emotion that dominated was anger. I was so angry, not at myself, but at my higher power. This is a new experience for me, but I am giving myself permission to walk through this process in my own time.
I am coping with this by staying very close to my support network, exercising and doing yoga, having fun, and by working my 12-step program.
The knowledge that I received histologic benefit (liver improvement) from treatment, even without viral clearance, aided in the comfort. Seven months post-treatment I requested a liver biopsy. I wanted to know if I actually did receive some benefit, so I could plan not only my future treatment strategies, but also my life. I am very happy to report that the results in medical jargon are "impressive" and in lay terms "f--k--g great." Minor inflammation, no fibrosis, and no activity are the post-treatment results. This is a big improvement from pre-treatment; which showed that I had some activity accompanied with fibrosis.
I should have been on treatment longer. My doctor now says co-infected people may need to be on hepatitis treatment for 18 months. There's a better interferon, that's stronger and has less side effects, coming out from another company, as well as new HIV drugs on the market today. But my viral load is back up to where it was, 1.5 million, which is low for hepatitis C (two million or less). My liver enzymes and everything else are perfect. My T-cells have been 350 since I can remember, and now they're 550. I feel great now.
This is confirmation for me, and I hope for all of you who are contemplating treatment, that even if you are not successful in evicting the HCV virus, containment and improvement are a big possibility. My vision for the future will definitely include re-treatment; but now I have the luxury to wait a year or two. I will serve another eviction notice; it is now just a matter of when.
I definitely feel that patients should not start both HIV and HCV treatment at the same time. They also need to look at their emotional and mental health, and if they are going through some stressful situations, they may need to wait until they are in a better place. Above all, they need to discuss this with their health team! I also believe that HCV/HIV support groups are very positive, and can really help while people are on treatment. I have started one at our site, and it is working very well. We have speakers, as well as success stories, sharing and answering questions. I also supply massages and free videos to help them (pampering is good, especially on treatment).
Living with co-infection presents us daily with many challenges; but I encourage you to take them one at a time. Take good care of yourself, and remember that pampering is a positive thing. Go out and get a massage, facial, or just take a hot bath; you will be surprised at how good you will feel. "Reward" should not be a foreign word to you, and it should happen daily, even if it is just a positive affirmation. All these things should be two, three, and four on your priority list; leaving the number one slot to support. Develop a support network that will include professionals, peers, and most importantly, loved ones who will be there 24-7.
Life should be lived to the fullest, and there is no reason that we should be left behind.
Gerald Moreno is the Health Educator with the University of California San Diego Antiviral Research Center. UCSD is a research facility that is currently conducting clinical trials for people living with HIV and HCV. For information on current and on-going trials, please call Gerald Moreno at (619) 543-8080 x237.
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