Weight Gain From HIV Treatment: Personal Experience

HIV treatment (antiretroviral therapy) has changed the face of HIV/AIDS. Successful treatment now allows millions of infected people to keep the virus in check – even undetectable – and lead healthy lives.

But as with all medications, it can come with side effects. In some people, weight gain is one of them. 

Recent studies show that 1 in 6 people who start HIV medications gain at least 10% in body weight in 1-2 years. Why this happens is still somewhat of a mystery. 

If you’re underweight when you’re diagnosed, the gain can be welcome and a milestone on the road to what’s called a “return to health.” 

But if you’re normal weight or overweight, it can be a stubborn problem and may lead to weight-related health problems. This could include diabetes and heart disease. 

Race, Sexual Orientation, HIV, and Weight

HIV affects Black/African American gay, bisexual, and other men who have sex with men more than any other groups in the United States. Black/African American gay and bisexual men accounted for more than a quarter of the almost 37,000 new infections in 2019. 

Weight gain is more common in Black people who are under treatment. So it could affect Black gay men in greater numbers. 

Reginald Austin and Eric (name changed to protect his privacy), are two gay Black men. They’re among those who struggle with their weight because of HIV medications.

Eric, 48, was diagnosed 3 years ago. He started the combination HIV medication Biktarvy and noticed weight gain within 4 months. 

“My weight naturally fluctuates, but never have I experienced such the amount of weight I am currently experiencing. At first, I attributed having a hard time losing weight to my age and slower metabolism.” 

He put on 35 pounds in total but lost 15. It’s been a struggle to keep it off. Eric has regained and lost that same 15 pounds a few times. 

Eric says he’s found some success by getting plenty of fiber and swapping one meal a day with a protein and veggie powder shake mixed with small amounts of fresh fruit and ginger. 

Biktarvy has made Eric’s viral load undetectable. “Other than having high blood pressure, I am considered healthy. I would be even healthier without the weight gain.” 

Reginald Austin’s Story 

Austin was diagnosed at 19 years old. That was 15 years ago, and his viral load is now undetectable. During his journey, Austin has taken several HIV medications and he started to put on weight within at least a year after first starting therapy. 

Jokingly, his family nicknamed him “Lurch” (from The Addams Family) before his weight gain because he was so tall and thin. His weight ballooned from 174 pounds to 248.  His father made a comment at one point, saying, “God, son, how big are you going to get?” 

The meds deposit fat in the lower midsection, and “It just doesn’t want to leave,” Austin says, adding that it was hard to take off weight in that area. 

Austin says everyone he knows gets heavier after starting medication.  He works as a linkage-to- care coordinator and case manager at Thrive SS, an Atlanta organization with a mission to support and work for health equity for Black gay men. 

He works with newly diagnosed people who are usually very sick, thin, frail, and unhappy with the way they look. “I look at them and smile and say, ‘Honey, trust me, when you get on the meds, that will stop.’” Austin says, at first, people are excited because they’re getting better with medication. But then often, the weight gain doesn’t stop. 

Now, at 34, Austin takes the combination pill Dovato, which he calls a “breath of fresh air.” He’s now 197 pounds but says it’s still hard to control his weight. 

Austin says he was at risk of developing other health problems because of his weight, so he overhauled his habits. He’s gone back to the gym and credits his plant-based diet for helping him drop the weight. 

Austin says he’s at a “happy place” in his life right now but not at “peace.” He worries that if he changes medication, his weight may “blow up again.” He says, “I am nervous about switching over to the (long-acting) shots. My first question is: ‘Will it cause weight gain?’” 

Healthy Living With HIV

“It is very important to be consistent with visits to see medical providers, especially the infectious disease doctors, because they generally have greater knowledge about living with HIV and secondary illnesses that may accompany HIV,” Eric says. “I would advise individuals to be hopeful that research is ongoing that will help promote longer and healthier lives.” 

Talk to your health care providers if you’re concerned about your weight. Your doctors may be able to come up with a new treatment plan that works better for you. They can also suggest ways to help you lose weight, including: 

• A referral to a registered dietitian who can help you craft healthy food plans that you’ll enjoy that can also help you drop pounds 
• Ways to work exercise into your daily routine and help you get started 

Besides weight loss, exercise has a lot of other benefits. It: 

• Helps your immune system work better 
• Fights depression 
• Builds strength and endurance

Don’t let weight gain or anything else, including cost, get in the way of sticking with treatment. If you have trouble affording HIV medical care, Austin has these suggestions: 

• Turn to your local health department for testing and referrals to local agencies that can link you to care. 
• Ask your doctor’s office if you’re eligible for Ryan White HIV/AIDS Program coverage. That’s a government program that helps people without insurance or who can’t afford care including doctor visits, medications, and support services like food services and psychological support. 

Build a Support Team

Eric says having a strong group of friends makes all the difference in his life. “People should surround themselves with individuals that will keep them accountable for healthy living standards, as well as welcome the opportunity for crucial and vulnerable conversations to occur.”   

He says: “I am a part of a group of gentlemen who also live with HIV. Knowing they have lived with this condition for many more years than I have gives me hope that I can live a great life that not only includes being healthy but also experiencing love.”