Despite advances in treatment, figuring when to start it—and what to start with—are two of the most intimidating decisions many HIV-positive people face.
HIV treatment works. Numerous studies have shown that ARV therapy reduces the amount of virus (viral load) in the blood, increases and maintains CD4 cell counts, and, most important, keeps HIV-positive people alive longer and healthier. And not only are there approximately two dozen ARV options available, we know how to use these medications even more easily, safely and effectively than ever before.
Because many newly diagnosed people don’t need to take ARVs right away, there’s often time to learn more about HIV treatment before making any decisions.
Fortunately, there are some basic guidelines in place. Generally speaking, treatment is recommended when your CD4 count falls below 350, and the regimen you use should consist of the safest, most effective medications available (see “When to Start, What to Start With?”). However, treatment decisions are dependent on a number of individual factors. And this is where close communication and planning with your health care provider can be extremely helpful.
All HIV medications can cause side effects that can make staying on treatment a challenge. Some regimens also have easier dosing schedules than others. “My first regimen suppressed my viral load to an undetectable level but caused some unpleasant side effects and I had to take 10 pills a day, in three doses,” says Hofmann. “Today, I am on a treatment regimen with no discernible side effects and I get to take all my pills once a day. I take them when I brush my teeth before I go to bed each night. That way, it’s a ritual and I almost never forget.”
It’s very important to let your doctor know about any issues you have with your treatment. It’s also key to be honest about how diligent you are when taking your pills; even a couple of missed doses a month can allow the virus to become resistant to your meds. And don’t forget to get regular lab work done to ensure that the drugs are working and that they, or the virus, are not creating any other health concerns. “For me,” says Hofmann, “a stellar set of lab work is a great reward for being responsible with my health and treatment. I get my labs done every three months and each time my viral load is undetectable, I get a bottle of champagne!”
“I’d say get as much information as you can and just surround yourself with support.”
MANAGING SIDE EFFECTS Like any drugs, HIV treatments can have side effects—at least some of the time. Some people don’t experience any side effects, others may experience them but find them tolerable, whereas some end up switching treatments because of them. Fortunately, ARV treatments are getting safer and more tolerable.
Talking with your health care provider and doing some homework (check out AIDSmeds.com) ahead of time about potential side effects can reduce your anxiety and ensure that if you do have a side effect you’ll know what to do about it. Some side effects like headaches and stomach problems commonly occur in the first few days after starting a new treatment but eventually subside. Other side effects, like elevations in cholesterol, require blood tests to diagnose and may need to be treated if switching isn’t an option.
You and your doctor should choose a regimen you think you can live with, allow yourselves time to get used to it, and have a backup plan if side effects are too severe.
THE LAB TESTS YOU'LL NEED The eyes may be the window to the soul, but lab tests are the window to your health. These tests, usually conducted every three months, will help you and your doctor look out for damage that can be caused by HIV, other diseases or medications you are taking. They include:
CD4 cell count As HIV disease progresses, CD4s decrease from a normal count of 500–1,500 to as low as zero. Below 200, you’re at an increased risk of an AIDS-related infection or cancer. Experts recommend beginning treatment when CD4s hit 350 or lower.
Complete blood count Measures the major blood cells, notably red blood cells, white blood cells and platelets.
Blood chemistry A series of tests to help determine if your major organs (e.g., liver, kidneys and pancreas), muscles and bones are working the way they should. “These tests are especially important in the first couple of years after starting new medications,” says Richard Loftus, MD, president of the Health Management Institute in San Francisco.
Viral Load Tests the amount of HIV in your blood and is often used to make sure that treatment is working once it’s started. An “undetectable” result—generally, a VL below 50—indicates that therapy is doing what it should be. “I expect all of my patients to be undetectable if they are taking their meds properly,” says Dr. Loftus. A VL that fails to go undetectable while on treatment, or becomes detectable again, he adds, could mean that treatment has stopped working effectively. “Then we need to do something about it.”
Drug-resistance testing Your doctor may want to test your virus soon after you’re diagnosed to see if you were infected with a strain of HIV resistant to any of the available ARVs—this can help guide your treatment when you’re ready to start. These tests are also useful for people whose VL suggest that their treatment is not working correctly.
WHEN TO START? WHAT TO START WITH? When should treatment be started? Fact is, there’s really no right or wrong answer—it all depends on the individual. Working with your health care provider, you’ll make the decision based on a number of factors, including your CD4 cell count (see “The Lab Tests You’ll Need”), other health issues you’re facing and your mental readiness to start treatment and stick with it.
“Every time researchers look at the question of when to begin HIV treatment,” says Loftus, “the answer keeps coming back that the higher your CD4 cells over the course of your life, the better they will protect you against health problems—not just AIDS-related infections, but many types of cancer.”
Regardless of when treatment is started, there’s no shortage of ARVs to choose from. A typical drug regimen—HIV meds are always used in combinations of three or more drugs to be maximally effective—contains a protease inhibitor (PI) or a non-nucleoside reverse transcriptase inhibitor (NNRTI) plus two nucleoside reverse transcriptase inhibitors (NRTIs).
Here are some questions you’ll want to ask your health care provider when the time comes to pick a treatment regimen:
Drug resistance Has my virus been checked to make sure that all of the available medications will work against it?
Dosing Is it better for me to take meds once or twice a day?
Side effects What are the most common side effects of different ARVs? Am I at a higher risk for certain side effects because of my family medical history or other health issues I’m dealing with? What should I do if I’m experiencing a side effect?
Drug interactions Can other prescription medications, over-the-counter drugs and supplements I’m taking be combined safely with HIV medications?
Loftus warns his patients, “Starting on HIV medicines is like trying on shoes—there’s a good chance the first one you try won’t be a perfect fit.” That’s OK, he says, because changes can be made. They should be very comfortable, since we want you to use them every day.”