Struggling to Find an HIV Drug Regimen That Fits

HIV medications have certainly evolved since 1987 when azidothymidine, also known as AZT (Retrovir, zidovudine), became the first drug approved to treat HIV. At the time it was the only line of defense against HIV, but high doses had toxic results. Crippling side effects and impossible pill-taking schedules were the norm.

Then in 1996, the modern era of HAART (highly active antiretroviral therapy) began, saving an estimated three million years of life in the U.S. in its first decade. HAART offered customizable treatment choices from several drug classes. Treatment options have continued to expand, and become increasingly more tolerable, causing fewer side effects and requiring fewer pills. Sounds like a winner, right?

But finding the right combination of drugs that will suppress the virus and cause minimal side effects is still a struggle for some people living with HIV. From the continuous doctor visits to the physical consequences to the emotional toll, the Goldilocks process of trial and error can be exhausting and daunting. Below, people living with HIV share their experiences finding the HIV medication regimen that works for them -- and what they learned along the way.

Teniecka Drake, Blogger for; Diagnosed in 2001

When I was diagnosed I had 750,000 copies of the virus in my system. I had 30 T cells and had an AIDS diagnosis when I was first diagnosed. So I was prescribed Viramune [nevirapine]. That did not work at all. It broke my face out into a disgusting rash. I went back to my doctor and told him this pill isn't working for me. He had also put me on Truvada [tenofovir/FTC]. He thought it may be the Truvada. I said "No. It's not the Truvada because I don't take it on a regular basis." The rash was so bad that I couldn't go to work because my face was covered. Eventually they put me on Truvada regularly and switched the Viramune to Sustiva [efavirenz, Stocrin]. Well that caused a lot of vomiting.

They kept me on Truvada for the longest time because that seemed to be working, and switched me over to Kaletra [lopinavir/ritonavir] gel capsules -- the ones that need to be refrigerated. That was OK but sometimes I would forget my pills because they were in the refrigerator. One time I went to my girlfriend's wedding and forgot my pills -- I had to fly to Nebraska without my pills. So after that they switched [me] to the capsules that are just hard pills.

I was going good and then my body started to resist the drugs. I was taking Invirase [saquinavir], and Zerit [stavudine, d4T] and Viread [tenofovir] and my body was rejecting them. It took a long time to get me back to the stage where my body wouldn't reject these drugs. By that time I had to go to a specialist and we did a bunch of blood tests to see what resistance problems were going on. They tried a lot of different pills and finally came up with a regimen that I've been on for a while. I've been taking Epzicom [abacavir/3TC, Kivexa] and Kaletra since 2008.

Kaletra can put on weight though. I also got neuropathy in my feet due to taking these pills. So I would wake up feeling like I'm walking on pins and needles. But I'm glad to be alive. Some of these things just come with the territory.

Some common side effects to HIV meds are fatigue, appetite loss, diarrhea, nausea and vomiting, rash and even mood changes. Most of these effects will eventually clear up on their own. But the arduous task of balancing side effects with daily activities such as working and caring for others can make adherence a challenge.

The number of pills to ingest at one time is another problem that many people face. Taking numerous pills at various times a day can also be hard to manage (and quite overwhelming).

Lillibeth Gonzalez, Community Health Educator, Gay Men's Health Crisis; Diagnosed in 1992

I was diagnosed 23 years ago. In 1992 I had advanced to AIDS due to my challenges with treatment. At the time it was hard for me to take 22 pills per day on time. I was in denial as well. I thought I was going to die. I lost my two brothers and a sister to complications due to AIDS. I had the side effects like nausea, stomach pain, lipodystrophy and wasting syndrome. It was like this for about a year.

At the time I was taking Combivir [AZT/3TC], Zerit, Epivir [lamivudine, 3TC], Viracept [nelfinavir] and Viramune. I was also taking Rescriptor [delavirdine] -- that one gave me a rash all over my body. I had to stop taking it. Then I found out that I had tuberculosis so I had to take pills for that too. I was up to 27 pills a day.

When I was diagnosed I was alone, scared and I had no idea where to go. I found out about Gay Men's Health Crisis. They had support groups with people who had some of the same side effects as me. Their nutritional program helped me manage my wasting syndrome.

Now I'm taking Intelence [etravirine, TMC125], Isentress [raltegravir], Prezista [darunavir] and Norvir [ritonavir]. I've been taking this regimen for four years now and it's working so well for me. I don't have any challenges. They have helped me so much. My [CD4] T-cell count went from 0 to 1,271. My viral load went from 300 million to undetectable. The treatment has been very successful. It's just finding the right combination and the right doctor that can work with you.

I ended up going there to get trained to be a peer educator. In 2006 I became a community health educator for Gay Men's Health Crisis. They saved my life. This is my home.

Another problem is allergies. Not every drug is compatible with everyone's body. Some people experience reactions to their medications due to allergies. These sensitivities can at times create treatment-choice puzzles.

Warren A. Dates, Senior Peer Linkage Specialist, Alabama Department of Health; Diagnosed in 2009

I was diagnosed in 2009, Nov. 2, to be exact. I was having trouble swallowing my own spit or being able to take food down. At the time I didn't have insurance so I had to wait to go to the doctor. When I finally got a job in October 2009, my insurance started on day one. I knew something was different about this, so I made an appointment with an infectious disease doctor. He examined me and they discovered my temperature had risen to 104.6. They sent me to the emergency room. They did a routine of tests including an HIV test. When I woke up the next day, that infectious disease doctor and a team of five more told me I had full-blown AIDS* and my T-cell count was eight. They gave me eight days to live.

I didn't know that I had an allergy to any drugs, and I didn't know anything about HIV drugs. I did not know there was such a thing as drug resistance. I was being treated for a week and nothing had changed. They gave my mother a 48-hour notice to make my funeral arrangements. I had two ulcers: one in my throat that was the size of a quarter and the other at the bottom of my esophagus where it connects with the stomach, the size of a golf ball. Apparently they had been there for some time. My immune system was compromised, and I found out that many of the drugs they were giving me were sulfa based, which I was allergic to. I'm also allergic to penicillin, acetaminophen, and Isentress.

Since then they have found a regimen that works for me: Truvada, Prezista and Norvir. We know as of late that there is a new drug called Stribild [elvitegravir/cobicistat/FTC/tenofovir, a one-pill-a-day HIV medication regimen] that will reduce the number of pills I take on a daily basis. However, my physician recommended that we keep the three-pill regimen. I've gone from taking 24 pills to taking three, but I still have plateaued because of the risks that come with new medications. I have resolved that I will never be that person who takes just one pill a day.

Now I link newly diagnosed people to care. I can give them my personal experience. I'm one of those worst-case scenarios that turned out for the better -- a blessing I attribute to this being my life's purpose. When you are keeping up with your doctor appointments and doing what you're instructed to do (at least 90% of the time), you can have life everlasting. I say that because I'm not perfect and even with my discipline, I make mistakes and sometimes get off course.

* Editor's note: The term "full-blown AIDS," while inaccurate (mainly because there's no such thing as "partial AIDS"), is a casual term for the stage at which a person has "progressed to AIDS," or has been given an "AIDS diagnosis." Read more about what defines an AIDS diagnosis.

Candace Y.A. Montague is an award-winning freelance health writer and health reporter for Capital Community News in Washington, DC.