HIV and Body Shape Changes: Where and What Kind?

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Although thankfully not as common as they once were, body shape changes remain a reality for some people living with HIV. But whereabouts in the body do they happen? And what kind of changes are we talking about?

The medical term is lipodystrophy. "Lipos" is the Greek word for fat and "dystrophy" refers to an abnormal growth or change. So lipodystrophy means changes in body fat.

Within lipodystrophy, there are three main types of changes:

  • loss of fat;
  • gains in fat; and
  • less visible changes in the way the body processes fat and sugar.

A Problem With Older Treatments

The first generation of HIV medications contributed to lipodystrophy, particularly fat loss. A number of people who took HIV treatment a decade or two ago are still living with the unwanted impact the early meds had on their body shape.

The outlook today is much more encouraging, as today's medicines have far fewer side effects. Most people starting HIV treatment today will not experience body shape changes due to their HIV treatment.

It's Not Necessarily Lipodystrophy

If you have concerns about your body shape or your weight, it's worth checking that there isn't a more common explanation than drug side effects. After all, most of us eat more and exercise less than doctors recommend.

Also, if you were run down before beginning HIV treatment, then an increase in weight since you started may simply be due to your improved health.

But if you do have unwanted or unexpected changes to your body shape, then it's worth checking in with your doctor. For example, weight loss can be an important warning sign of the presence of an infection or another condition. The problem might not be HIV related, but it certainly should be investigated.

Sunken Cheeks

One well-known form of lipodystrophy is loss of fat in the face, creating sunken cheeks. It can also result in the outlines of the facial muscles being seen through the skin, the appearance of folds in the skin when smiling or chewing and loss of fat in the temples.

Fat loss was a common side effect of medications that are no longer regularly used in the United States -- but which you may have taken in the past. These include Combivir (AZT/3TC), Retrovir (zidovudine, AZT) and Zerit (stavudine, d4T).

Fat Loss Elsewhere

Fat loss can affect other parts of the body. Depletion of fat from under the skin on your arms and legs can make them thinner with veins being more visible. Fat can be lost from the soles of the feet making walking more painful and tiring. Similarly, fat loss in the buttocks can make sitting uncomfortable.

The medical term for fat loss is lipoatrophy. The fat that is lost is subcutaneous, in other words, from just below the surface of the skin.

A Taut, Pushed Out Belly

Fat gain most commonly affects the abdomen. The fat that builds up is visceral fat -- the fat deep inside the body, surrounding organs like the bowel and liver. It may push the stomach wall out from the inside, creating an enlarged but firm belly.

If you have extra fat around your waist that feels doughy or fleshy, this is probably not due to lipodystrophy, but everyday weight gain due to over-eating or lack of exercise.

The build up of abdominal visceral fat remains a problem for a minority of people taking HIV treatment for the first time. It isn't the side effect of a specific drug, but it may be caused by the recovery of the immune system after receiving effective HIV treatment.

Fat Gain Elsewhere

Fat gain can affect other parts of the body and may involve subcutaneous fat just below the skin. Some people have had fat deposits on the back of their neck and shoulders (the so-called "buffalo hump"). Both men and women have had fat deposits in their breasts. Some people have developed small lumps of fat called lipomas, often in the limbs or trunk.

The medical term for fat gain is lipohypertrophy. ("Hyper" means excessive.)

Changes to Blood Fats and Sugars

Visible changes to body shape may happen at the same time as increases in the amount of fat and sugar in the blood. Both fat loss and fat gain have been linked to changes in the way the body processes these fats and sugars.

In terms of fats, levels of triglycerides and Low Density Lipoprotein (LDL, the "bad" cholesterol) may be too high. In terms of sugars, the body may have difficulty processing glucose: This is known as insulin resistance.

These changes can raise the risk of heart disease, stroke and diabetes.

Managing Body Shape Changes

Body shape changes are complex problems whose causes are only partially understood. Similarly, the best way to manage these problems is not entirely clear, although interested clinicians and activists have a wealth of practical knowledge. If you are concerned about lipodystrophy, you may need to take an active role in getting the best monitoring and care.