The Positive Side

Spring/Summer 2004 

Chatty CATIE: Side Effects Suck

Interviews by Diane Peters

 

Side effects suck. Sometimes they’re so bad that people stop taking their HIV drugs. Skipping doses of your meds can spell drug resistance and treatment failure, sending your health into a downward spiral. If your meds are making you sick, tell your doctor right away. There are many ways to handle side effects. If you can’t find a solution, your doc may be able to switch you to a more tolerable drug. Also, ask other people with HIV/AIDS how they cope. That’s what we did. The following five name their worst side effect and describe how they dealt.

KATH WEBSTER, 40

Volunteer treatment information counselor and educator, BCPWA
Diagnosed with HIV: 1995
Viral load: undetectable
CD4 count: 400
Vancouver, BC

IN JANUARY 2003, I started experiencing extreme fatigue, shortness of breath, a racing heartbeat and intermittent fevers. It really affected how much I could do in a day, and overall I felt very unwell. My blood work showed I had very low hemoglobin and severe anemia.

Shortly after that, I was diagnosed with hyperthyroidism (Graves disease), which isn’t related to HIV. One of the symptoms is slight anemia, so we thought Graves might be the cause. However, after treating my thyroid, the anemia persisted. I wasn’t producing any red blood cells and became dependant on blood transfusions — every two or three weeks. Last year I had more than 12 transfusions.

We didn’t think it was a side effect of my HIV drugs because none of the meds I was taking were known to cause anemia. I saw several specialists and we ruled out all the opportunistic infections. I had two bone marrow biopsies and two CAT-scans. I got my nutrition levels tested, and they were all normal. All this time my CD4 count was stable with an undetectable viral load.

Living with the unknown was very stressful and scary. I was asking myself: “Is this the beginning of the end?” All the doctors were scratching their heads. I was doing my own research, too, but we kept hitting a brick wall. A few doctors said, “If it’s any of the drugs, it’s the ddI [Videx].” So last August we switched the ddI to tenofovir [Viread]. After about six weeks, I started feeling better and didn’t need any more blood transfusions. It’s weird because I’d been on ddI for five years, and then suddenly this rare side effect occurred.

ADVICE: Strange things can and do happen with these meds. Not all the long-term side effects are known. My experience showed me the importance of having blood work done regularly and reporting every change in my health to my doctor. When you do have a side effect, hang in there. There’s often a way to manage it.

 

JAMES MADISON, 46

Social worker (on disability)
Diagnosed with HIV: 1995
Viral load: undetectable
CD4 count: 390
Dartmouth, Nova Scotia

IN 1997, I got very sick and went on protease inhibitors. I started to feel better and my counts slowly improved, but I began to look worse. After about six months, I developed lipodystrophy. At first, my arms and legs started to thin out and I got large veins. I could cover that up with clothes.

My body fat was collecting on my stomach and under my chin, so I tried to eliminate all of it. I ended up not eating well and overdoing it with exercise. I began to get very tired.

By about eight months, the lipo started to affect my face. At first, my face looked chiseled, but before long it looked emaciated. All the health professionals I asked about it would shrug and say, “You have to accept it. There’s nothing you can do.” I didn’t want to complain about it. I felt I should just be grateful for being alive.

I started going out less and less. I was supposed to go on trips to see my family, who are all across Canada, but I didn’t go. When I did go out, I sought out places that were dark, like bars or movie theatres. I avoided having my picture taken.

After about three years, I started researching solutions online. I read about an injection called Perlane that’s used for people with really deep wrinkles. My family doctor referred me to a cosmetic surgeon who was really great because he let me call the shots. During the procedure, I held a mirror and said: “A little bit more here and more here.” Within a half-hour my sunken cheeks were all filled out. It was a couple thousand dollars, but I’d saved up my money and had some contributions from family members who knew this was important to me.

The Perlane injection wasn’t permanent, so I had to get a touchup after six months. Then, 18 months ago, I went in for Artecoll injections, similar to Perlane but permanent. It looks amazing and natural. You’d never know I had facial wasting. It’s given me more confidence to get out there and live.

ADVICE: One of the worst things about my experience with lipodystrophy was the brick walls I came against when I tried to find a solution. You have to keep trying. It’s not that health care professionals are wrong all the time, but sometimes you have to find your own resources.

MARLO COTTRELL, 29

Artist and furniture upholsterer
Diagnosed with HIV: 1995
Viral load: 86,000
CD4 count: 500
Lethbridge, Alberta

ABOUT SIX YEARS AGO, two weeks into taking medication for the first time (AZT, 3TC and Crixivan) I became so nauseous. I was living off Ensure because I couldn’t keep anything down. When I’d throw up, all I could taste was chemicals and it always happened shortly after taking the Crixivan, so I knew it was the medication. It was horrible. I was basically stuck at home because I was so sick and I had to take a leave from my job.

My doctor said that after four weeks of being on the meds the nausea would subside. So I stayed on the regimen but kept getting sick. I tried everything — eating crackers, taking Gravol tablets, even marijuana — but nothing helped.

After about three months I was hospitalized for an infection. My doctor administered intravenous Gravol, which did nothing to combat the nausea. He then prescribed Stemitil, typically used for chemotherapy patients. Although I was still extremely nauseous, I wasn’t vomiting as much. This was a blessing, as I could keep down solid food and my meds.

Of course, you have to take your meds faithfully. But I ended up developing resistance to them because I could never keep them down. At one point, I said to myself: “I’m taking these drugs to save my life, but what about quality of life?” So, I stopped taking them all. I felt so guilty that I didn’t tell my doctor or see her for eight months.

Then I moved from a small town to Vancouver and started seeing a specialist. I told her about the side effect and how many pills I was taking each day. She switched me to a different cocktail that was more conducive to my lifestyle (Videx, Viramune and 3TC) — just nine pills a day compared to 20 pills daily. I tolerated my new regimen really well. But after six months I got neuropathy in my feet. I went to my doctor right away and went off the meds. I learned from my first experience not to wait and do nothing. Now, I’m not taking meds. I think I should wait until I really need them.

ADVICE: Don’t compromise your quality of life. I needlessly suffered on a drug that didn’t work for me because I didn’t feel I could be honest with my doctor about the problems I was having with it. I thought I was going to disappoint her by letting her know I wasn’t tolerating it. Looking back, all I did was prevent myself from getting the best treatment possible. Also, my first doctor wasn’t a specialist and I think it’s important to see someone knowledgeable about HIV.

It’s so important to be compliant with your medication. When I finally found a combo that worked for me, after awhile I started becoming complacent, thinking it wouldn’t hurt to miss a dose here and there. It was for this reason that my treatment failed and I became resistant to 3TC.

 

MARCO MARINELLI, 39

Volunteer, CPAVIH
Diagnosed with HIV: 1988
Viral load: 3,000
CD4 count: 250
Montreal, Quebec

I DON'T REMEMBER a time when I didn’t have diarrhea. It’s the worst side effect I’ve experienced. The meds, especially triple therapy, have made the runs a common occurrence in my life, but I’ve learned to manage it.

When I’m on a really strict diet — no coffee or beer, and very lean meats — I have no problems. Not long ago I visited my mom, who’s really into health food, tofu, herbal tea and all. She eats meals regularly and doesn’t drink alcohol, and after two weeks at her house, I had a beautiful stool. It even floated!

But this kind of lifestyle takes the fun out of life for me, and I’d rather not deprive myself. I’m not going to miss out on anything. If I’m going to indulge, I take Imodium and deal with the consequences. I can afford to do this because I have a healthy weight and lots of energy. If I were so sick that I lost weight and felt tired all the time, I’d be more disciplined.

ADVICE: You must adapt to whatever life throws your way. I always have spare underwear wherever I go. My friends sometimes tease me about it. It’s important to be positive and surround yourself with like-minded people. I go out and have a blast. Disease feeds off depression. Think positive, no matter the side effects, because there’s always a solution.

 

EDNA LAFAYETTE, 46

Masters student
Diagnosed with HIV: 1992
Viral load: undetectable
CD4 count: 500
Guelph, Ontario

HIV ISN'T SOMETHING I think about a lot. Fatigue is. It started gradually about four years ago, and I don’t know if it’s the meds or the disease.

I get very frustrated because sometimes it’s hard for me to make plans. I want to be up at 6:30 every morning and go all day, but this morning I didn’t crawl out of bed until 9 o’clock. Because a lot of my friends don’t know about my HIV status, I worry it makes me look a little unreliable. I wonder if they think, “She’s always tired, what’s her problem?”

I cross-country ski and do drumming and African dance, all very intense activities. Quite often I push myself. Last night, I went to my drumming class and could barely function.

But I’m trying to be more nurturing and flexible with myself. Sometimes I’ll stay home and read or take a bath. Once a week I try to get a long (12- or 14-hour) sleep, usually on the weekend. That seems to rev me up enough for the start of the next week. I’m also getting into gentler activities, like yoga and stretching. I find it very relaxing and satisfying, and I feel like I’m still doing something for my body.

ADVICE: Be realistic about what you can accomplish and stay within those limits. Be kind to yourself. We live in a world where everything is so fast paced. There’s not a lot of affirmation for being easy on yourself. I have to get that kind of affirmation from myself.

For more info see CATIE’s Practical Guide to HIV Drug Side Effects.

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