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Body Weight and Body Shape Changes

There are a number of changes in the body that can occur in some people living with HIV, such as regular weight loss or gain, or unintentional wasting. Not all causes of such changes are directly related to HIV infection or antiretroviral drugs. The good news is that newer antiretroviral drugs do not lead to lipodystrophy, a specific type of body change that was associated with some older drugs. People with this condition sometimes look to surgeries or other cosmetic therapies to address the visual effects of these changes.

Figuring out the cause 

The causes of body changes from HIV are not fully understood. In some cases, body changes may occur when antiretroviral therapy (ART) leads to a stronger immune system, or the changes might be because of HIV itself, which may affect the ways in which the body stores and uses blood fats. In other cases, these body changes are the same type seen in HIV-negative people and are related to diet, exercise or general aging.

Along with the gradual slowing of metabolism that is common as we grow older, weight gain can happen in people living with HIV in the same way, and for the same reasons, as it does in people who do not have HIV. However, there are several factors related to HIV that can lead to the weight and body changes that are part of lipodystrophy syndrome.

Weight gain

Thanks to the widespread availability of HIV testing and antiretroviral treatment (ART) in Canada and other high-income countries, AIDS-related conditions, including wasting (involuntary and progressive loss of muscle mass), are now rare compared to the time before ART was available. Today, weight continues to be an issue among people living with HIV in high-income countries, but in a different way than it was in the 1980s and early 1990s. However, there are increasing concerns among healthcare providers and scientists that more HIV-positive people are becoming overweight or obese. When people living with HIV begin ART, they usually experience an increase in weight over the first year or two. Generally, this increase ranges from a few pounds to a few kilos. 

Weight gain is normal in people who were previously underweight because of HIV-related health issues. This can signal a return to good health. However, when the weight gain leads to being overweight or obese, this can create other health problems. Carrying excess weight has long-term implications, including an increased risk for pre-diabetes and diabetes, abnormal cholesterol levels and higher-than-normal blood pressure—all of which add to the risk of heart attack and stroke.

It should be noted that, compared to earlier decades, more HIV-negative people have also become overweight or obese. Several factors contribute to a risk for excessive weight, including:

  • exercise
  • food portion sizes
  • accessing healthy, nutritious foods 
  • certain medications

The following issues affect weight gain:

Physical activity

Daily physical activity, including walking and climbing stairs, can help maintain a healthy weight. 

Sleeping problems

The quality of sleep is as important as how many hours you sleep. People who have sleeping problems tend to gain weight. Assessing sleep problems may be useful if you are unexpectedly gaining weight.

Emotional and mental health

How you respond to stress can affect your weight. For example, some people eat more fat and carbohydrate-rich foods when stressed, as these foods may provide as a source of psychological comfort. Constant, excessive intake of carbohydrates and fatty food can lead to weight gain over time. 

Depression can also affect appetite. Some people gain weight when depressed, while others might lose weight. 

Metabolic conditions, hormones and arthritis

Some health conditions and stages in life are associated with weight gain, including:

  • diabetes
  • problems with the thyroid gland and its hormones
  • menopause
  • arthritis

HIV causes chronic and excess inflammation and activation of the immune system – taking ART and achieving and maintaining an undetectable viral load significantly reduces, but does not normalize, inflammation and immune activation. Among HIV-negative people, chronic inflammation contributes to an increased risk for many conditions, including obesity. It is plausible that the chronic inflammation seen in HIV infection also plays a role in increasing the risk for weight gain and obesity over the long term.

Diet

Not everyone follows a diet that is informed by dietary guidelines. If subsidized access to dietary counselling is available (sometimes this is provided in large hospitals and clinics), consultation with a registered dietitian may be helpful. Registered dietitians can assess the quality and quantity of meals, and if necessary, provide helpful advice about making healthy changes. Some community organizations may be able to help you access healthier foods, too.

Alcohol

Alcohol contains calories, which can lead to weight gain  As well, some mixed drinks contain added sugar.

Non-HIV medicines and weight gain

Some medicines used to treat other conditions can sometimes cause weight gain in people, whether or not they have HIV. When investigating excess weight gain, it is important to discuss with your pharmacist and healthcare provider the possibility that some of the excess weight you are carrying could be caused by these other medicines. Just because these medicines may have contributed to weight gain, it does not mean that you should stop taking them. Talk to your healthcare provider about your options. 

ART and weight gain

Some people who use ART gain weight. This weight gain is modest for most people. Weight gain of a few pounds or kilos is probably a good thing for many people – it is a return to health if they are underweight. However, a minority of people have more substantial weight gain. This increase in weight may not necessarily be caused by ART but could be caused by changes to your body’s metabolism as a result of using ART or, perhaps, underlying issues (such as pre-diabetes or something else) have intensified. 

Most people living with HIV today are taking a regimen based on a class of drugs called integrase inhibitors. Commonly used integrase inhibitors include:

  • bictegravir (in Biktarvy)
  • dolutegravir (in Dovato, Juluca and Triumeq)
  • cabotegravir (in Cabenuva)
  • raltegravir (in Isentress)

Since so many people living with HIV are taking integrase inhibitors, it is difficult to prove the role that integrase inhibitors are playing in weight gain. Some people experience weight gain while others do not. 

The good news is that any increased weight that sometimes occurs with the use of these drugs usually stabilizes after a few years. For most people, weight gain that may occur with these drugs is modest. However, some people experience serious weight gain and become overweight or obese, and investigation is needed to understand why weight gain has occurred. 

Nucleoside analogues

There have been reports that some people gain weight when they switch from one formulation of tenofovir (TDF) to the newer formulation (TAF). Pills that contain TAF are:

  • Biktarvy
  • Descovy
  • Genvoya

It may be that the older formulation of tenofovir (TDF) was associated with minimal weight gain and even a bit of weight loss. As with weight gain with integrase inhibitors, so many people are taking TAF that it is difficult to separate the exact cause of weight gain from the different drugs in a regimen. 

What to do about weight gain

The first step is to confirm that you are gaining weight. You can rely either on a scale at home or at your healthcare provider’s office. Check with your healthcare provider that they are keeping track of your weight.

You or your healthcare provider can also calculate your body mass index (BMI), which is your weight divided by the square of your height. There are online calculators that can do this and there are charts that explain a healthy BMI. 

HIV meds

Studies have found that the benefits of ART are greater than the risks, so it’s best to work with your healthcare provider to try and find the possible cause(s) of weight gain. ART is life-prolonging. Stopping ART is not a good idea, as HIV can come out of hiding and begin to damage the immune system.

Non-HIV meds

In addition to asking your healthcare provider about any possible effect of HIV drugs on your weight, keep a checklist of other non-HIV medicines that you are taking to discuss with your healthcare provider. If you want to find out more about the non-HIV medicines that you are taking and their potential impact on weight, you can ask your pharmacist.

Issues that can contribute to weight gain

As mentioned earlier, there are many other issues that can contribute to weight gain. Tell (or remind) your healthcare provider if you are experiencing:

  • anxiety or excess worry
  • depression
  • menopause
  • prediabetes or diabetes
  • problems falling asleep, staying asleep or not feeling rested after sleeping
  • thyroid hormone issues

If any of these issues are untreated or not managed well, they could be contributing to weight gain. Some people have experienced weight loss after these issues have been treated.

Diet and alcohol

To deal with dietary issues, you might be able to access subsidized dietary counselling if you and your healthcare provider feel you will benefit from it. The cost and availability of these services vary considerably across Canada. If access to this counselling is costly, check Canada’s food guide for simple ideas.

Some people have a drink of alcohol every night or every other night. Alcohol contains calories and, over time, this could be one factor that contributes to weight gain. Review your use of alcoholic beverages with your healthcare provider.

Late-night eating

Eating late at night, when our metabolisms are lower (compared to the daytime, when we are usually more active), is associated with an increased risk for weight gain. This is especially the case with foods that are rich in calories, particularly carbohydrates and fats. If you do eat these foods late at night, try decreasing the amount and try not to eat them every day. If you have trouble cutting back, talk to your healthcare provider.

Physical activity

Many people living with HIV are not getting enough exercise. You don’t have to join a gym, but you can put activity into daily routines, such as going for daily walks. If facilities are available, think about joining an exercise group, taking dance lessons, going swimming or some other physical activity that you can enjoy. Some people introduce climbing a flight of stairs every day to their routine. 

If you are ready to embark upon something more strenuous than walking, first talk to your healthcare provider to find out what kind of exercise is right for you. Start your exercise program slowly, perhaps a couple of days a week at first. Then, when you feel ready, increase the number of days per week that you exercise and gradually increase the intensity of each exercise. Some places offer subsidized gym memberships.

Losing excess weight is a journey. The excess weight you may have did not build up overnight. Whatever solutions you and your healthcare provider agree to implement for weight loss, they should be for the long-term. Studies have found that people who lose weight rapidly, through crash diets or other means, tend to quickly regain weight.

Unintentional Weight loss

Although less common these days, some people living with HIV will lose weight. Planned weight loss can be the result of lifestyle changes such as exercise and diet. Unintentional and sustained weight loss has many possible causes and can be HIV-related or not. Common causes include:

  • depression, which can cause you to lose interest in eating
  • hyperthyroidism, a condition caused by an overactive thyroid that causes you to burn calories quickly
  • problems with your mouth, teeth or throat that make eating painful
  • certain drugs, such as methamphetamine
  • infections, including those caused by parasites
  • cancer

The most extreme form of unintentional weight loss is HIV- associated wasting. This is rare now, thanks to improvements in HIV diagnosis and treatment. However, it does still occur, especially among people who are diagnosed late. HIV-associated wasting is a complex problem that requires a multi-step approach alongside ART. This includes appetite stimulation and, if appropriate, diet supplementation to boost calories and provide nutrients including protein. The approach can also include hormone replacement therapy, particularly testosterone, as appropriate; glutamine supplementation; treatments for anything that affects food intake and absorption, such as nausea or problems of the mouth; treatments for any infections; and, in some cases, human growth hormone therapy.

Lipodystrophy Syndrome

Lipodystrophy syndrome is the term used to describe a range of symptoms that include changes in body shape and metabolism. Lipodystrophy-associated body changes can involve fat loss or fat gain in specific parts of the body.

Lipoatrophy is the loss of fat in the face, arms, buttocks and legs. This fat loss can cause veins to protrude in the arms and legs and create sunken cheeks, along with loss of fat elsewhere in the face.

Lipohypertrophy is the accumulation of fat that results in enlarged breasts, an enlarged belly, as well as fat on the base of the neck and shoulders known as a “buffalo hump.” Some people also develop lipomas, which are round, moveable lumps of fat under the skin. These are sometimes called fatty tumours but they are not cancerous.

Although some people consider fat changes to be a “cosmetic” issue, they can cause considerable discomfort when:

  • the buffalo hump leads to difficulty sleeping, headaches and neck pain that makes it harder
  • to turn your neck or shoulders, which can affect side vision and make driving difficult
  • the excess abdominal fat causes breathing, digestive and back problems
  • the facial fat loss and body changes cause emotional distress, isolation and non-adherence to medications

Antiretroviral drugs

Several classes of antiretroviral drugs have been associated with fat accumulation. Protease inhibitors (PIs) may alter the function of certain enzymes needed for maintaining healthy, functional fat cells and healthy levels of blood fats. The result is fat accumulation. The older PIs may be more likely to cause fat accumulation, whereas at least two of the newer PIs, atazanavir (Reyataz) and darunavir (Prezista), have not been associated with fat accumulation.

Nucleoside analogues (nukes) can cause fat accumulation in some people, possibly because they contribute to insulin resistance, which is associated with an increase in gut fat. HIV itself may also contribute to insulin resistance. Non-nucleoside reverse transcriptase inhibitors (non-nukes) and integrase inhibitors are less commonly associated with fat accumulation.

Fat loss has most commonly been associated with two of the oldest nukes, d4T (Zerit) and AZT (Retrovir, and in Combivir, Trizivir and generic formulations). These drugs may damage mitochondria, which are your cells’ energy factories. This damage can cause fat cells to lose their ability to function normally and distort their shape. In some cases, the cells can die. If enough fat cells are affected by this mitochondrial damage, it can cause wasting of fat tissue in the face and other parts of the body.

Nukes that have not been linked to fat loss include:

  • 3TC (lamivudine, and in Combivir, Trizivir, Triumeq and Kivexa)
  • FTC (emtricitabine, in, Atripla, Biktarvy, Complera, Descovy,  Genvoya and Stribild)
  • tenofovir (Viread, and in Atripla, Truvada, Complera and Stribild)
  • abacavir (Ziagen, and in Trizivir, Triumeq and Kivexa) 

Whether ddI (Videx EC) causes fat loss is not clear, but it is very rarely used in Canada today.

Fat loss has also been associated with the non-nuke efavirenz (Sustiva, and in Atripla) though it is not known how efavirenz causes this fat loss.

Reversing changes in fat distribution associated with lipodystrophy is difficult. The best option is to choose drugs that have a lower chance of causing fat changes. If you have concerns about medication-related fat loss or gain, always discuss these with your healthcare provider.

For people who have developed lipoatrophy, discontinuing the older nukes and substituting either tenofovir or abacavir can help. Fat loss will usually stop after the problematic drugs are stopped and, in some people, fat loss may actually reverse somewhat. Restoration of fat is usually only partial and generally occurs very slowly, with visible changes taking six months to several years. People who have not been on the problematic drugs very long, and have not experienced serious fat loss, will generally have the best results with fat restoration after switching drugs.

Supplements

Because of the link between lipoatrophy and mitochondrial damage, some people seek to prevent or reverse mitochondrial damage by taking a combination of:

  • a potent multivitamin that includes the whole B complex of vitamins and a broad spectrum of antioxidants (vitamin C, carotenoids, selenium and others)
  • acetyl-L-carnitine (500 mg, three times daily with meals)

A separate supplement of N-acetyl-cysteine (NAC; 600 mg, three times daily with meals) can be added to boost glutathione levels, since glutathione is an antioxidant that can be deficient in HIV disease. Talk to your healthcare provider or pharmacist about any supplements you plan to take so they can help you make the right choice based on your other health conditions and treatments.

Anabolic steroids, exercise, and growth hormone stimulators

The use of anabolic steroids, when combined with exercise, can help boost “lean tissue,” including muscle size, but this combination does not significantly improve fat loss or accumulation. In studies of people using the steroids oxymetholone or nandrolone, muscle size increased but there were no reductions in accumulated fat, and there were worrisome decreases in HDL cholesterol (the healthy kind of cholesterol). In those using oxymetholone, there were also increases in liver enzymes, indicating possible toxicity to the liver.

Exercise alone has generally been shown to have either a small benefit or no benefit in terms of losing the fat associated with lipodystrophy. But exercise does have many other benefits, including boosting cardiovascular fitness, mental well-being and self-esteem.

Tesamorelin (Egrifta) is a synthetic growth hormone-releasing medication that is sometimes used for the treatment of HIV-associated fat accumulation. Clinical trials showed that Egrifta reduced visceral gut fat, but also that it would have to be used long-term. When the drug was stopped, gut fat returned.

Surgeries, facial fillers and related therapies

Liposuction can remove fat in some areas of the body. It has been used successfully with buffalo humps and lipomas. Standard surgery can be done for breast reduction, although the fat sometimes returns over time. Neither liposuction nor other surgical techniques can be used in the belly because of the high risk of bleeding.

To help fill out sunken cheeks and restore a fuller appearance to the face, a variety of facial fillers and other therapies have been used. Some fillers have serious drawbacks and possible complications, so it is important to choose carefully. Results vary widely among individuals using these fillers for facial wasting, and are not generally long-lasting. The skill of the healthcare provider injecting these substances is important for the best results. 

These surgeries and therapies can be costly. Talk to your healthcare provider to find out if there is any coverage for these services in your region.