“HIV treatment today often involves a single pill once a day,” says Paul Volberding, MD, a professor emeritus in the department of medicine at the University of California in San Francisco, in contrast to the side-effect-heavy, multi-pill regimens of the 1990s described in an article in the British Journal of Clinical Pharmacology. “The expectation is that people with HIV will have few, if any, side effects from treatment.” Researchers are still working to understand the long-term side effects of HIV treatment, and to distinguish them from physical changes that may be caused by the virus itself. Read on to learn more about short-term and potential long-term side effects of HIV treatment, and what you can do about them.
Fatigue Try to schedule extra rest and scale back strenuous workouts.Nausea Eat smaller meals and limit spicy foods. Try to avoid being around overpowering cooking aromas.Diarrhea Drink plenty of water and other healthy beverages like fruit juice or broth to replace lost fluids. Try cutting back on spicy dishes and focus on bland food.Rash Skip scented body products and try to wear only clothes made from natural, soft fibers like cotton and linen.
Other temporary side effects of HIV treatment may include headache, fever, muscle pain, and dizziness. Ask your doctor whether it’s safe to take over-the-counter pain relievers to relieve these minor side effects. But be aware that sometimes side effects that seem mild — like a rash, fever, or nausea — may be a sign of a more serious problem. When starting a new HIV medication, be sure to ask your doctor how long you should wait for any of these side effects to subside before seeking medical attention. Also note that any allergic reaction to your medications — like swelling in your face or around your eyes, lips, or tongue — may be life-threatening and require emergency care.
Long-Term Side Effects of HIV Treatment
More significant side effects of HIV treatment can develop over time. It’s important to communicate openly and regularly with your care team if you start to have issues rather than making any changes to your medication on your own. While side effects can be potentially serious, the consequences of not taking needed HIV medication can be much worse. It’s worth noting that HIV-positive individuals who started taking ART in the 1990s, when early medications were more toxic, may have different long-term effects than someone who started taking ART in the 2020s. The data we have on the long-term effects of ART on aging survivors of HIV, such as that produced by a study published in Infectious Diseases and Therapy in June 2018, mostly show the effects of that first generation of drugs, and not the improved treatments we have today. Since researchers have been collecting data on HIV/AIDS only for about 40 years, there are also uncertainties about whether long-term side effects are due to ART or the virus itself. Regardless, these side effects can include:
High levels of cholesterol and other fats in your blood A simple blood test can check for these changes. You may need to start taking cholesterol medication and avoid fats in your diet.High levels of sugar in your blood In order to lower diabetes risk, you may need to adjust your diet and medication.Changes in the way your body stores or metabolizes fat Called lipodystrophy, this side effect can lead to fat buildup in certain areas of your body, such as your belly, and fat loss in others, such as your face and limbs. Strength-training exercise as well as certain drugs may help counter this issue.Buildup of lactic acid in your blood Symptoms include loss of appetite, nausea, vomiting, and stomach pain. Report these symptoms to your doctor as soon as possible.Osteoporosis People who have been on certain ART regimens are at increased risk of bone fragility fractures, per the aforementioned article in Infectious Diseases and Therapy. Your doctor can schedule a scan to assess your bone density. Prevention steps include weight-bearing exercise and a diet that promotes bone health.Liver disease Signs and symptoms include abdominal pain, dark-colored urine, jaundice, and light- or clay-colored stools. Your doctor can test for this disease and determine whether you need treatment.Premature renal failure If you experience a change in how frequently you urinate, you have blood in your urine, or your urine is frothy, tell your doctor.
What Is Lipodystrophy?
HIV and some medications used to treat it can lead to fat loss (atrophy), movement of fat around the body, and storage of fat in unusual places — various changes doctors refer to broadly as lipodystrophy. Fat may also form in deposits on the heart, liver, or in the blood, or it may accumulate as visceral fat around the belly or other areas. The earliest generation of ART contained certain HIV-blocking enzymes called nucleoside reverse transcriptase inhibitors that caused issues like fat atrophy. But Steven Grinspoon, MD, who serves as the chief of the metabolism unit at Massachusetts General Hospital in Boston, says that “Nowadays the newest concern relates to the use of integrase inhibitors,” which according to HIVinfo.NIH.gov is a type of medicine that stops the virus from replicating and may or may not be part of a person’s ART regimen. “This class of drugs is often associated with weight gain. At this time the long-term cardiovascular consequences of that weight gain are not known.” Research shows up to 32 percent of HIV patients have a lipodystrophy condition known as HIV-related adipose redistribution syndrome, or HARS, sometimes called “hard belly” by patients. In this condition, fat accumulates underneath the abdominal muscles and sometimes in the upper back or neck. This deep fat, or visceral adipose tissue, feels harder than fat that rests just under the skin, and it can push up against the organs. At the same time, it can cause patients to lose soft fat from the face, limbs, and buttocks. HARS can cause daily negative physical effects, from bending and breathing difficulties to stomach issues like acid reflux, abdominal cramping, peptic ulcers, constipation, and diarrhea. It can also have emotional consequences, like depression and anxiety caused by stigma, body dissatisfaction, and loss of mobility. Over time, hard belly can increase a person’s risk of inflammation, heart and liver disease, cancer, and even death. If belly fat is concerning you and it doesn’t go away with diet and exercise, ask your doctor if it could be visceral adipose tissue. Certain medications may be able to target this deep fat.
Understanding HIV Drug Resistance
A change in medications to avoid certain side effects isn’t always the best solution, Dr. Grinspoon says. “In HIV, you can develop resistance to therapeutics if you keep switching therapies,” he explains. Per HIVinfo.NIH.org, drug resistance in HIV typically occurs when the virus has the opportunity to mutate (make new variations of itself) and multiply, and a medicine that was previously working no longer does what it should. The risk of drug resistance increases when you don’t take an HIV medication exactly as directed, or you skip doses, start and stop using ART, or switch medications often. If an HIV treatment plan that was once effective no longer seems to be, tell your doctor. Blood tests can identify drug resistance and help determine other effective HIV treatment options for you.
Bottom Line
Your doctors can work to manage side effects with additional medications and early detection, so communicate openly about your concerns and continue to take your medication as prescribed.