It’s well established that meds slow HIV and let positive people live long, healthy lives. But that doesn’t mean taking them is easy. A little knowledge can help you decide when to take pills—and which ones
Not everyone who tests positive needs to take HIV meds right away. Current guidelines recommend starting when your CD4 count dips below 350 (see below for an explanation of CD4 count). But it’s a decision you and your doctor will make based on things like how ready you feel to start taking meds, your lab numbers and other health conditions you face. Learning which side effects—if any—to expect is a big part of the picture (see “About Those Side Effects...,” below).
If you and your doc decide its time to start, next comes picking a combo. Today, there are more choices than ever, in four drug classes (each disrupts HIV at a different point in its life cycle). There are nucleoside/nucleotide reverse transcriptase inhibitors, known as NRTIs or nukes; non-nucleoside reverse transcriptase inhibitors (NNRTIs, or non-nukes); protease inhibitors (PIs); and entry inhibitors (EIs.) New classes are being studied too. Learn more at www.AIDSmeds.com.
HIV meds are taken in combination because when one drug is used alone, HIV may quickly develop a way to outsmart it (a.k.a. resistance). It’s easier to control HIV when you hit it at a few different points in its life cycle. Standard treatment (often called HAART, or highly active anti-retroviral therapy) combines at least three meds, usually two nukes plus either a non-nuke or a PI. Today’s choices allow for therapy tailored to your unique needs. Some things to consider when choosing meds:
Potency: Does the combo pack enough punch to control HIV? Durability: Can the combo stave off resistance? Safety: What’s the combo’s long-term effect on your body? Toxicity: Can you put up with the side effects? Convenience: Do the meds cramp your style? Works Well With Others: Do they interact with other meds you take?
After you and your doctor decide when to start and what to take, there’s the issue of adjusting to swallowing meds every day. It can be a challenge to take every dose of your meds as directed all the time, and it takes some getting used to. But skipping doses can allow the virus to change in a way that lets it get around the drugs so the combo no longer works. Support from other positive people, as well as from family and friends, can make taking meds easier. It may help to know that most people diagnosed with HIV today don’t have to handle handfuls of pills and difficult food requirements. Some of the newer meds can be taken just once a day, with more options coming soon.
Know Your Lab Tests
Having HIV means monitoring your health regularly. You’ll have blood drawn every three to six months to see how well you’re responding to the virus, as well as how your overall health looks. Here are some of the lab tests you’ll become familiar with:
Viral Load (VL)
This measures the amount of HIV in your blood. Meds can make VL undetectable, which doesn’t mean the virus is gone, just too low to measure—a sign your treatment is working.
CD4s are immune system white blood cells (also called T cells) that fight invaders in your body. HIV kills these cells, so they decrease over time. Negative people normally have CD4s above 800. Positive people with counts above 500 usually have pretty healthy immune systems. The U.S. government recommends starting to take HIV meds when your CD4s fall below 350. Below 200, you’re at risk for opportunistic infections (OIs) and your doctor may prescribe other drugs to prevent them.
Complete Blood Count (CBC)
This test checks all the different types of blood cells. Watch your red blood cells (too low means anemia) and your neutrophils (a type of white blood cells; if they’re low, your risk of infection goes up).
This one measures the fats in your blood (lipids), including cholesterol and triglycerides. Some HIV meds can raise blood fats, and high lipids can be a signal of increased heart-disease risk.
High blood sugar (also called glucose) can be a sign of insulin resistance, which can turn into diabetes. Some HIV meds can put you at greater risk of diabetes.
Liver and Kidney Function
These tests show how well these organs are working. Your liver processes everything you take in, and some HIV meds can cause liver toxicity and kidney problems. Liver tests are especially important if you also have hepatitis B or C.
These tell if your HIV has developed resistance to certain meds, which means that those drugs might not control your virus very well.
ABOUT THOSE SIDE EFFECTS...
There are ways to manage side effects so that you can manage to take your HIV meds
Many people avoid HIV treatment because they dread side effects. And it’s true that the drugs have drawbacks. Many people have no side effects or only mild and manageable ones. Or you may feel some—like nausea, diarrhea or a flulike feeling—when you first start meds, but these go away in a few weeks, as your body adjusts to the drugs.
Listen to Michael Smith, who tested positive in 2001: “When I was diagnosed, I needed to start HIV meds plus other drugs for infections, because I had only 50 T cells. You’ve heard people say, ‘I was fine until I took the meds, then I got sick.’ That’s me. Even with 50 T cells I was feeling OK. Then I started the meds and had vomiting, diarrhea, all of it.”
But Smith, a 40-year-old documentary filmmaker who lives in Brooklyn, was determined to gain control. “I worked at it,” he says. “At first, I had to plan my whole day around side effects. But I learned to manage diarrhea with less fat and more fiber in my diet and timed my doses so the nausea didn’t disrupt my life. This went on for nearly three months. My doctor helped talk me through it, and then I started getting better lab reports. That made me realize it was worth it. Now, I take my meds without any of that side-effect drama.”
Other side effects can change your body over time. Raising blood fats or sugars is one example; causing fat loss in your face or limbs (lipoatrophy) is another. You and your doctor will be watching for these, and you can switch meds if there’s a problem. There are also drugs and nutritional supplements that can lessen or alleviate some side effects. Don’t suffer in silence. Tell your doc about any symptoms you are experiencing, and ask for help.
Some of today’s newer meds cause fewer side effects than their older cousins. HIV meds are not a cure. But with new drugs coming down the pipeline, you have a better chance than ever to find a combo that suppresses your virus without suppressing your quality of life.