“I’m concerned a slight bit about the meds. But I have friends who have been on them for years. And they keep telling me that it’s not as bad as it sounds.” —Andre Cruz, San Antonio, TX, Diagnosed: 2004
You will probably need to use HIV medications to control your virus—unless you are so-called long-term non-progressor, the lucky 2 to 5 percent or so of HIVers who are still healthy and off meds 15 or 20 years after infection. But ideas on when to start treatment have changed a lot since the mid-‘90s. Then, the philosophy was “hit hard, hit early,” in hopes of knocking down your viral load as soon as possible. Now that we know more about the meds’ drawbacks and the immune system’s resilience, most docs won't even talk to you about starting meds till your CD4 count has fallen below 350—and some prefer to wait till it's near 200.
HIVers ready to start treatment need to consider the four main qualities of HIV drugs and how well each suits your medical needs and personal lifestyle:
Tolerability describes whether or not a drug’s side effects are tolerable to you—whether you can handle diarrhea, for instance, but don’t have a strong enough liver to take one of the meds that tends to be hard on that organ. The most uncomfortable side effects usually appear within days after starting a new treatment and then taper off after four to six weeks, but others have been linked to problems that only develop after months or years.
“I thought, great, I can take medicine and that’s gonna make me feel better. Maybe it’s a little on the naïve side. But I have no side effects. They might not work for everybody, but I’m grateful they work for me.” —Joshua Sacks, Washington, DC, Diagnosed: 2004
Potency is another term for strength, or how effectively a drug suppresses HIV. Certain drugs perform this task better than others.
Durability is how long most people can take a certain combo before their HIV becomes resistant to it. For folks just starting therapy, the two longest-working combos are those recommended by the recently revised government guidelines (three or more years in most people).
Pill burden describes the number of pills and doses you’ll be taking daily. A lighter pill burden can be helpful if you're the forgetful type. And it's now possible to take some combos just once a day.
Meet the meds!
“The medicine is really your friend and if you look at it as an enemy then that’s really what it becomes. I switched regimens because they were making me fat, and I’m so into my whole appearance. It caused me to be off medicine for a month before I learned what I had done to my body and to myself.” —Marvelyn Brown, Nashville, TN, Diagnosed: 2003
HIV meds come in three “classes.” (We’re skipping fusion inhibitors and entry inhibitors because they’re not normally used by people who are newly diagnosed.) You take drugs from at least two classes (that’s why it’s called combination therapy) because each class attacks HIV at different points in its self-copying process and a one-two punch is harder for the virus to escape. It takes teamwork to keep HIV down to the point where it is undetectable and causing as little damage as possible.
THE “NUKES” (nucleoside/nucleotide reverse transcriptase inhibitors • NRTIs) Some are single nukes: Emtriva (FTC), Epivir (3TC), Hivid (ddC), Retrovir (AZT), Viread (tenofovir), Videx and Videx EC (ddI), Zerit (d4T) and Ziagen (abacavir). Some are two drugs in one: Combivir (Retrovir + Epivir in one pill), Epzicom (Epivir + Ziagen) and Truvada (Emtriva + Viread). Trizivir (Retrovir + Epivir + Ziagen in one pill) is three drugs in one.
Nukes are generally the “backbone” of combination therapy because few combos without them get inside the CD4 cells to keep HIV from making copies of itself by using your own cells as factories.
Nukes side effects include nausea, malaise (generally feeling yucky), fatigue-causing anemia (low red blood cell count) and neuropathy (numbness, tingling or pain in the limbs). And some research suggests that nukes cause lipoatrophy (fat loss in the face, arms and legs), particularly when taken with protease inhibitors.
THE “NON-NUKES” (non-nucleoside reverse transcriptase inhibitors • NNRTIs) There are three: Rescriptor (delavirdine), Sustiva (efavirenz) and Viramune (nevirapine).
Like nukes, non-nukes keep HIV from copying itself. When used with nukes, non-nukes can suppress HIV without many of the side effects associated with protease inhibitors.
HIV needs to mutate only once to become resistant to a non-nuke (versus several times for PIs). And when it does, it becomes resistant to all three—possibly ending this class as a treatment option.
The most common side effect of non-nukes are skin rashes. In some cases, with Viramune or Rescriptor, the rash can be serious and may need to be treated. Viramune can also cause liver problems. Side effects for Sustiva may include dizziness, trouble sleeping or concentrating and unusual dreams or nightmares. In rare cases, it can also cause depression. The symptoms may be less noticeable if Sustiva is taken at bedtime.
PIs block the protease enzyme; without that, new copies of the virus can’t be made. These powerful anti-HIV meds may be slower to cause resistance than non-nukes.
PIs cause an array of side effects in some HIVers, including diarrhea, nausea and vomiting; elevated cholesterol levels; and lipodystrophy—abnormal fat build-up in the belly, breasts or shoulders, or abnormal fat loss in the face, arms and legs. All PIs (except Lexiva) have food requirements.
For more about HIV meds, we recommend you check out AIDSmeds.com.