Underestimated HIV-related symptoms - HIV update, 10 April 2024

Underestimated HIV-related symptoms

HIV symptoms can vary from person to person and many people don’t experience symptoms at all. But some people with HIV may experience symptoms that can be caused by HIV-related illness or side effects from HIV medication. They can be very burdensome for some people and can impact quality of life.

Researchers in Spain have found that HIV doctors often underestimate how many people with HIV experience these symptoms and side effects. The researchers asked over 500 people living with HIV if they experience symptoms and also asked HIV doctors to estimate how many patients experience these symptoms.

Between half and two-thirds of people living with HIV reported experiencing the following symptoms:

• nervousness or anxiety
• sadness
• fatigue
• sleep problems
• muscle/joint pain.

But HIV doctors estimated that only 22-27% of people with HIV experienced these symptoms. Doctors were most likely to underestimate the prevalence of gastrointestinal symptoms (such as bloating, pain, or gas in the stomach); 66% of patients reported them compared to 45% of doctors. That means doctors frequently thought these symptoms are less common than they actually are.

People with HIV were also asked how bothersome they found these symptoms. The most bothersome symptom was sleeping difficulties (81%). Around 70% reported that symptoms related to their mental health or central nervous system (such as anxiety, sadness, depression and lack of energy) were bothersome. A similar proportion said this for hair problems.

Almost half of respondents living with HIV had experienced at least one drug-related adverse event in the last month. When discussing this with their HIV doctor, only 60% felt listened to and that their doctor took appropriate action. A quarter felt their doctor downplayed their experience and around one in five had to insist on receiving the required care.

HIV doctors thought that depression, dizziness and sleep problems are the symptoms or side effects most likely to lead to someone stopping their HIV treatment.

The results of the study show that many HIV-related symptoms may be overlooked or dismissed. This can mean they may not get properly investigated and treated.

Advocating for yourself can be challenging, especially if you are not feeling very self-confident or when you’re feeling unwell or vulnerable. But it’s important to remember that you are entitled to good care and that your symptoms shouldn’t be dismissed. You can visit aidsmap.com for more tips on how to make the most of your HIV clinic appointment.

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Weight gain on HIV treatment

Starting HIV treatment can help you to improve your health, suppress your HIV and restore your immune system. In recent years, studies have shown that people living with HIV often gain weight after starting HIV treatment. However, not everyone gains weight and the amount of weight gained varies.

Experts have two main theories of why some people may gain weight after starting HIV treatment:

• Weight gain is caused by the HIV drugs. This is the original theory.
• Weight gain is a ‘return to health’ phenomenon that happens when treatments suppress HIV. People gain weight because they’re recovering from the impacts of HIV on their body. Also, there’s been more weight gain in recent years than before because some of the older HIV drugs were actually suppressing people’s weight.

Studies have found plenty of reasons to question the role of HIV drugs in weight gain. However, research presented last month at the Conference on Retroviruses and Opportunistic Infections (CROI 2024) also suggests that weight gain on HIV treatment is not only a ‘return to health’ effect.

According to the ‘return to health' theory, people who have been living with untreated HIV for a long time and have a low CD4 count should have the strongest weight gain after starting HIV treatment. That’s because HIV treatment would help them recover the most.

Researchers have now investigated whether the people least likely to show a ‘return to health’ effect (people who have recently acquired HIV) have any signs of weight gain after starting treatment. The researchers found differences according to the types of HIV drugs people took – in those with the lowest body weight before starting treatment, people taking integrase inhibitors or protease inhibitors had gained substantially more weight than people taking NNRTIs. They also found that people with normal weight or who were overweight gained less weight than those with a low starting weight.

Another group of researchers looked at the results of two studies of people starting HIV treatment in African countries. These found that treatment with the integrase inhibitor dolutegravir was associated with greater weight gain, especially when combined with another drug called TAF. Increases in weight were much smaller for people taking the HIV drugs efavirenz and TDF (two drugs which are thought to suppress weight).

People who had a CD4 count below 100 would be expected to have the lowest body weight and the greatest weight gain in a ‘return to health’ effect. The researchers found that these people had the greatest weight gain on dolutegravir and TAF, and were the most likely to develop obesity. This suggests that a long period of immunosuppression may prime the body to respond more strongly to drug-induced metabolic changes (how food is broken down and turned into energy) – or that when weight increases, some drugs will blunt the weight gain.

Some researchers also investigated weight changes in monkeys infected with an HIV-like virus. They found that the bodies of lean monkeys reacted to receiving treatment in a way that was similar to a condition called pre-diabetes. This state of pre-diabetes encourages the development of obesity through greater fat storage.

Another study looked at hormones and weight gain in mice. The researchers found that when female mice were fed dolutegravir for two weeks, the activity of oestradiol (a sex hormone) was blocked by dolutegravir, and the mice spent less energy, even though they ate the same amount of food. These findings may point to a mechanism by which integrase inhibitors lead to weight gain, especially in women.

Scientist are continuing to work to better understand why some people gain weight when taking HIV medications. If you’re worried about weight gain, we recommend you speak to a member of your healthcare team.

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Opioids to deal with pain in older people with HIV

People with HIV are now living longer than ever, because of effective HIV treatment. And many people living with HIV, especially older people, experience pain. The causes of pain in people living with HIV are varied. Some causes of pain are connected to HIV and others are unrelated.

One way of treating pain is with medications known as opioids. They’re painkillers that block pain signals between the brain and the rest of the body. When prescribed by a doctor, opioids can be a helpful way to manage pain in the short term. But when taken over a long time period, opioids can lead to dependency – this means your body has become used to taking opioids so regularly that it needs them to function normally. It can feel like you can’t live without the drug anymore.

That means people who take opioids are at risk of opioid use disorder. This is also called opioid addiction. About 2.5 million adults in the US had opioid use disorder in 2021. Between 1999 and 2021, there have been an estimated 645,000 deaths from opioid overdose in the US, including from both prescription and illicit opioids, such as heroin and fentanyl. Tighter restrictions on opioid prescribing in recent years mean that many people who had previously been prescribed opioids by their doctor now take opioids they buy illegally. Older people who take opioids are at higher risk of sedation, cognitive impairment, falls, fractures and constipation.

Researchers in the US have now investigated how many older people with and without HIV had been prescribed at least one opioid medication and how many were diagnosed with opioid use disorder. In total they looked at data from 124,488 people with HIV and 373,464 people without HIV over the age of 65.

Despite decreases in opioid prescribing over time, a higher percentage of people with HIV received at least one opioid prescription between 2008 to 2019 – from a high of 43% in 2010 to a low of 32% in 2019. In comparison, prescribing to HIV-negative people ranged from a high of 36% in 2010 to a low of 25% in 2019. People with HIV were 1.3 to 1.4 times more likely to receive an opioid prescription than HIV-negative people.

Similarly, people with HIV were significantly more likely to be diagnosed with opioid use disorder – between 2-5% compared to 0.6-2% in HIV-negative people.

It’s important to remember that not all opioid use is dangerous – short-term use of opioids prescribed by your doctor can help manage pain. But using opioids long term can be very dangerous and can lead to opioid use disorder. If you’re worried about your opioid use or want support dealing with persistent pain, we recommend you reach out to your healthcare provider.

If you’re living in the US and you’re worried about your opioid use, you can contact the National Opioids Crisis Helpline on 1-800-662-4357.

In the UK, you can find support on the NHS website. For more information on pain and HIV, see our page below.

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