The term “PrEP belly” appeared this spring when one X user commented on a picture of DJ John Summit shirtless on stage, saying he looked like he had “PrEP belly,” Implying that one can develop a visibly enlarged gut from taking pre-exposure prophylaxis (PrEP).
For clinicians who prescribe PrEP, conversations about side effects are common, but they say concerns fueled by social media have created new barriers, particularly ones that touch on body image.
When Damian Roman, an adult gerontology primary care nurse practitioner and HIV specialist at Central Outreach, first heard the term “PrEP belly,” it was brought to him by a patient who had seen it on social media.
At first, Roman thought people might be confusing PrEP with a much older class of HIV treatment medications that caused a condition called lipodystrophy, basically visceral fat in the abdomen.
“That did happen with older drugs, but PrEP is not even in the same drug class,” Roman said. “It’s a harmful, damaging piece of misinformation.”
Others may be referring to short-term gastrointestinal symptoms that can occur when starting the medication, he said. However, less than 10% of people experience nausea, vomiting, and diarrhea, and if it does occur, it usually subsides within the first two weeks of taking a new medication.
Misinformation about appearance-related side effects can be especially influential in communities where body image concerns are already prevalent.
“Among gay men specifically, I see a lot of body dysmorphia within the community,” Roman said. “We tend to be a bit harder on ourselves about how we look.”
Research supports those observations. A 2022 study published in PLOS ONE found that gay men reported higher levels of body dissatisfaction, body dysmorphic symptoms, and appearance-related anxiety than heterosexual men, suggesting that social comparison and internalized appearance ideals may contribute to heightened concerns about physical appearance.
“We have that culture that can play into very dangerous ways of thinking,” Roman said.
While PrEP has been available since 2014, awareness and familiarity with the medication still vary widely, according to providers at Central Outreach.
PrEP has transformed HIV prevention over the past decade. The medication, available as a daily pill or long-acting injection, is highly effective at preventing HIV when taken as directed.
Anybody who is at risk for HIV is a candidate for PrEP, which is nearly everyone, but there are some people who are more vulnerable due to lifestyle.
Khavitha Ramakrishnan, an infectious disease physician at Central Outreach, said patients seeking PrEP span all demographics.
“We see young people, older people, people who align with the LGBTQ community,” Ramakrishnan said. “I see a lot of college students.”
Some patients arrive knowing exactly which medication they want, she said, while others are simply “PrEP-curious.”
“Some folks have heard the term PrEP, but are not sure it’s for them,” Ramakrishnan said. “I think that’s a great starting point for conversation. There is no option that fits all.”
The conversations Ramakrishnan has daily with patients often include addressing fears about side effects.
“PrEP is completely safe, it’s highly effective, and we don’t see a lot of long-term side effects, especially with newer drugs and with better kidney-friendly and bone-friendly drugs that have come out,” Ramakrishnan said.
Ramakrishnan says that for PrEP-curious people, she tends to try to meet them where they are, whether that means telemedicine, where patients can ask questions from the comfort of their own homes, or even shipping medications to their homes.
Ramakrishnan says that there may be some gastrointestinal issues at first, or the feeling of being bloated, but most of the time it gets better within a few weeks of consistently taking a new medication.
“From real-world, anecdotal experience, I can’t even think of a single patient who has come back and complained of persistent nausea and bloating beyond a month, or that side effects have prevented them from taking the medication.”
For Sarah Miller, a nurse practitioner and vice president of clinical operations in Pennsylvania, and the lead provider at Central Outreach’s North Shore clinic, combating misinformation has become an increasingly important part of patient care.
“A lot of our population are young, healthy individuals who are not on any medications, so we are trying to convince a young healthy person to take daily medication for something they might think they aren’t at risk for, so it sometimes can already be a hard sell,” Miller said. “So if we have this extra social media misinformation on top of that that we are fighting, it makes it really hard to convince someone that yes this really is important for you, and it is something that you need.”
“These medications are safe,” Miller said. “They are safer than taking an aspirin a day.”
Miller said patients should not hesitate to bring questions about information they encounter online into the clinic.
“We can see so much online now,” Miller said. “Some of it’s true, and it’s great information. It’s where a lot of people are getting their information these days. But we do need to fact-check.”
“Fact checking can include calling your provider,” Miller said. “Call, email, show up in the clinic, and ask us. We are happy to talk through these things; we are happy to address any needs, questions, concerns, or anything that somebody sees online and wonders, ‘Is this true?’ We want to talk about it.”