The Positive Side

Winter 2008 

Chatty CATIE: One pill, two pill. Red pill, blue pill. How did you choose your meds?

RonniLyn Pustil asks five PHAs how they chose their current combination of anti-HIV meds (or, as the smarty-pants call it, highly active antiretroviral therapy — HAART for short).



Diagnosed with HIV in 2003
CD4 count: 317
Viral load: 42 (“I consider myself undetectable”)

I’ve been on Sustiva (efavirenz) and Kivexa (abacavir + 3TC) since December 2007. It’s my second regimen. The only reason I switched is because I was on Sustiva and Combivir (AZT + 3TC) before and I was having issues with the Combivir — some noticeable lipodystrophy around my shoulder area and a bit in my cheeks.

It was my choice to switch and my doctor was more than willing to look at it. She thought Kivexa would be a good drug for me. She put me on it after we did the hypersensitivity test and found out that it was safe for me to take abacavir.

Knowing a number of other people who’ve had issues with their drugs, I’ve had it pretty easy. My drugs are working and I’m happy, and that’s all that matters.

Considering where I was five years ago, I have to think positively. I was diagnosed in the hospital. I was really sick and didn’t know what was going on. At first they thought I had tuberculosis. Then they did an HIV test and I tested positive. I was in really bad shape. My CD4 count was 33 and my viral load was half a million. I had pneumonia (PCP). I also was diagnosed with hepatitis C.

Within a week I was on HIV medications. It took between four and six months before I started to feel almost normal again. My viral load dropped quickly and dramatically — I’ve been undetectable for about four years now — but it was a struggle to get my CD4 count back up. I’ve been a slow climber… slow and steady.



Diagnosed with HIV in 1984
CD4 count: 169
Viral load: 150–200

I refused to start HAART for many years. I made several attempts but the diarrhea, headaches and fatigue made me give up. I was skeptical that the treatments would work, and I also didn’t feel like I really had to start because I had never come down with an opportunistic infection.

I made the decision to really start after attending a workshop at Maison Plein Coeur. It explored the meds through different discussions and through art. Everyone had different opinions and experiences about HAART. I came away with a different take on the meds. I stopped seeing only the negative side of HAART.

I’ve been seeing the same doctor for several years and he always respected and supported my right not to take meds. When I did start, I didn’t feel forced in any way because I made the decision myself. We agreed that I would start HAART and not stop for one year.

The decision about which combination to take was made on the advice of my doctor. He was aware of my concerns about adherence, so he was careful to prescribe a combination that can be taken just twice a day. In January 2008, I started taking etravirine (Intellence), Truvada (FTC + tenofovir) and Norvir (ritonavir). I was part of a clinical trial, but I didn’t feel like a research guinea pig. Instead, I felt more like I had achieved a personal victory through all the work I did in accepting to start treatment and making a contract with my doctor.

Many people might find that a CD4 count of 169 is pretty low, but I lived with between 0 and 4 CD4 cells for 13 years, so I see my combination as a great success. I have no regrets about waiting so long to start HAART, as I have the hope of living for many more years.




Diagnosed with HIV in 2000
CD4 count: 540
Viral load: undetectable

May 1, 2000: I tested positive. My virus was at very low levels and I was healthy and active. For the next few years I had regular tests and checkups. Everything was going great.

2005: I could feel a change taking place. I was becoming doubtful of the most basic things, and I wasn’t able to complete thoughts. By 2006, I started getting terrible pains in my legs. Sometimes my neuropathy was so painful that I couldn’t walk.

December 2006: I had a near-collapse at work. I had no energy and felt mentally and physically empty. I wasn’t on HIV meds and I felt like the HIV was taking over my system. My advocate at BCPWA told me to go to my doctor, who immediately sent me for blood work. My CD4 count was 50 and my viral load was over 100,000. I was very sick with many infections.

I met with my doctor and pharmacist to discuss the immediate need for drug therapy. The side effect issue was very high on my list. I didn’t want to be sick from taking drugs that were supposed to help me. I also suffered terribly from anxiety and depression, and I wanted meds that wouldn’t make those issues worse.

Given how sick I was, my doctor and pharmacist wanted an aggressive approach against the virus. We discussed all the treatment options and decided on a combination of Kaletra (lopinavir / ritonavir) and Truvada. I was wary of Kaletra because of concerns about heart problems as a possible side effect. However, I’d heard that in combination with Truvada the drugs worked well against HIV.

February 2007: I started HAART. Initially I had strong side effects, but I never stopped taking the meds (the side effects only lasted one month). I rested a lot as my system repaired itself.

Today: I’ve added relaxation therapies and fitness to my health regimen. They’ve helped me gain weight and improve my mental state. I’ve also learned the value of talking to my peers at BCPWA about their experiences.



Diagnosed with HIV in 2000
CD4 count: 312
Viral load: 25,000

I never really chose my meds; it was the doctor who did the choosing. I wasn’t even given any options.

When I was first diagnosed they put me on meds right away — Viracept (nelfinavir) and Combivir. I was on that combination for about two years. Then I went through a bad time in my life, and every day that I took those meds I was reminded of what I had, so I stopped taking them completely. I avoided going to the clinic and I put HIV in the background.

I didn’t go back on the meds until about two years ago. A change in lifestyle made me do it: I had my 13th grandchild and decided I wanted to live a little longer. Also, I got a job as Outreach Coordinator at All Nations Hope AIDS Network. (Even though I didn’t want to deal with my own problems, I still wanted to help other people.)

When I went to see the doctor, she put me on Kivexa and Sustiva. Basically, she left the room, wrote out the prescription and put it in my hand. I didn’t ask questions — I figured the doctor knows what she’s doing. I think I put too much faith in the doctor. I was never given the opportunity to discuss the medications. There could be something out there that’s better for me, but nobody’s ever given me the chance to talk about it.

Plus, nobody has ever discussed with me the side effects of any of the meds I’ve been on. The only way I know about side effects is from the information package that comes with the meds. I’ve found out more about my meds and their side effects from that package than from my doctor. I get more help from my pharmacist than from anybody else. I’m also on methadone, and nobody’s ever talked to me about drug interactions.

I'm fortunate because I get the education I need about HIV from the field I work in. What about the people out there who don’t have that opportunity?



Diagnosed with HIV in 1985
CD4 count: 570
Viral load: <40 (“the new undetectable”)

How I chose my HAART regimen, or, life in the default lane: My choice was pretty limited in the early days, as it was for everyone else. It wasn’t just that there weren’t many drugs to choose from, but the ones that were available were harsh, although fortunately they proved to be effective.

Thanks to the arrival of protease inhibitors, I was pulled back from the brink. Initially, I was on a dual therapy of saquinavir (Invirase) and d4T (Zerit), and in 1998 I stepped into the world of HAART when a third drug, nelfinavir, was added.

Since then, there have been changes to my regimen in attempts to minimize side effects and take advantage of newer and hopefully less-toxic drugs. My choice of antiretrovirals has been limited due to my intolerance of ritonavir. The side effects of my regimen have been constant and chronic, and I am now eyeing drugs from new classes, such as the integrase inhibitor raltegravir (Isentress), that seem to be very well tolerated.

I recently went through four months of test-driving several new combos in an attempt to switch to a regimen that’s less toxic. New classes of drugs, new drugs in old classes and drugs combined into one pill — I tried them all. It was a rough ride and at the end I was left taking the same old meds — saquinavir and nelfinavir. Tenofovir (Viread), the third member of my HAART team, was signed on because it’s a less toxic non-nuke than the older but still potent d4T.

While my choices at first were pretty much by default and made by my doctors, 20 years on it is a different story. Now I learn about the drugs that are available. I review the literature and talk with people who are taking the drugs, trying to weigh the benefits and potential side effects before I meet with my HIV doc. My doctor is open to discussing my options and considering possible combinations of antiretrovirals.

So, it’s been through a combination of consultation and elimination that I’ve ended up on my current HAART regimen.