Lipodystrophy means abnormal fat changes. It is used to describe a number of unwanted changes in body fat that are experienced by many HIV+ people. Lipodystrophy can also include changes in fat and sugar levels in the blood of HIV+ people.

Although there is no official definition of lipodystrophy in HIV, it is generally broken down into two categories:

• Body shape changes – Includes fat loss (lipoatrophy) and fat gain (lipohypertrophy) or redistribution in particular areas of the body
• Metabolic complications – Includes increases in fats and sugars in the blood

HIV+ people can experience both body shape changes and metabolic complications. This is sometimes called lipodystrophy syndrome.

Changes in the way your body looks are caused by fat loss or build up.

Fat loss may happen in the:

• Arms and legs (fat loss may cause bulging veins in the arms and legs)
• Buttocks
  
• Face (sunken cheeks)
  

Fat build up may happen in the:

• Stomach
• Breasts
• Back of the neck (“buffalo hump”)
• Round lumps of fat may appear under the skin (lipomas)
  

Some studies show that lipodystrophy affects men and women differently. Women are more likely to see fat gain in their breasts and stomachs while men are more likely to see fat loss in their legs, arms, buttocks, or faces. However, many men and women suffer from both symptoms. It is not clear why there might be differences based on sex. It might have something to do with hormones or with how men and women burn fat differently.

Lipodystrophy can dramatically change your appearance. These changes can leave some people with feelings of poor self-image and low self-esteem. Some people may want to stop taking their HIV drugs. Others may put off treatment due to fear of experiencing lipodystrophy symptoms. You should talk to your health care provider if you are feeling this way.

Changes in fat (lipids) and sugar (glucose) in your blood are called metabolic complications and include:

• Increased lipids in your blood such as cholesterol and triglycerides (hyperlipidemia)
• Increased glucose levels (hyperglycemia)
• Insulin resistance or diabetes
• Increased lactic acid in your blood (lactic acidosis)
  

Metabolic changes cannot be seen without lab tests, but can cause serious long-term health problems.

• Increased levels of cholesterol and triglycerides can put you at a higher risk of developing heart disease or having a heart attack or stroke.
• Increased glucose and insulin levels greatly increase the chance of developing diabetes, a disease that can cause vision and kidney problems and may be life threatening.
• Increased lactic acid can lead to a rare but dangerous condition called lactic acidosis. Symptoms include nausea, vomiting, or stomach pain; feeling very weak and tired; and shortness of breath.

Be sure your health care provider is ordering regular lab tests to monitor you for metabolic complications. Call your health care provider right away if you are experiencing symptoms of lactic acidosis.

See TWP sheets on hyperlipidemia, diabetes and lactic acidosis for more information.

Scientists have many theories about what causes lipodystrophy and research in this area is ongoing. However, the exact causes of lipodystrophy are still unknown. There may be different causes for different symptoms.

• Fat loss: Research shows that certain HIV drugs from the nucleoside reverse transcriptase inhibitor (NRTI) class are the main cause of fat loss. These drugs are Retrovir (zidovudine, AZT) and Zerit (stavudine, d4T)
• Fat gain: It is less clear what causes fat gain. Taking protease inhibitors (PIs), another class of HIV drug, may increase the risk of fat accumulation. Another theory is that insulin resistance and increased lipid levels play a role in fat gain
• Increased lipids: Some of the PIs are believed to increase lipid levels. It is still not clear which ones are most likely to do this, but Reyataz (atazanavir) seems to be the least likely to cause increased lipid levels
• Increased glucose levels, insulin resistance, and diabetes: Both PIs and NRTIs have been linked with insulin resistance and diabetes
• Lactic acidosis: Some of the NRTIs are associated with lactic acidosis, especially Zerit and Videx (didanosine, ddI).

Not everyone taking HIV drugs develops body shape changes or problems with fat or sugar levels in the blood. Researchers have been looking for other factors that may cause lipodystrophy. The following appear to be risk factors:

• Starting HIV treatment with lower CD4 cell counts
• Starting HIV treatment at an older age
• Being on an HIV drug regimen containing certain PIs and NRTIs (the longer the time on the regimen the higher the risk)
• HIV itself
• Cigarette smoking
• White race

At this time, there is no simple treatment for lipodystrophy. However, there are a number of approaches that are being used to treat some of the symptoms.

Fat loss

• Switching or avoiding Zerit and Retrovir: People who have not developed fat loss should avoid taking the NRTIs Zerit or Retrovir to prevent the condition. People who have fat loss can switch these drugs for others in the same class (either Viread [tenofovir] or Ziagen [abacavir]). The results of switching drugs are uncertain and may take some time; you and your health care provider may decide that changing medications is not right for you. Be sure to talk with your health care provider before stopping or switching any medications.
• Injections, implants, and plastic surgery: Some people have procedures done to restore fullness in the face. Injections of fat or synthetic fat substitutes can fill out sunken cheeks, as can cosmetic cheek implants. However, many of these treatments are still being studied and have not been approved by the Food and Drug Administration (FDA) for HIV-related lipodystrophy. If you are considering plastic surgery, research the options carefully. Some treatments are short-term, can be very expensive, and don’t work for everyone. It is important to consult with a plastic surgeon or dermatologist experienced in treating HIV-related lipodystrophy. Also find out if your insurance company will cover plastic surgery.
  
  

Fat gain

• Human growth hormone (HGH): HGH may decrease excess fat build up in the stomach; however, it can also cause fat loss in the arms, legs, or face. Two drugs, a synthetic human growth hormone (Serostim) and a synthetic growth hormone releasing factor (tesamorelin), have shown the ability to reduce fat build up in studies, but are not FDA approved for use in HIV-related lipodystrophy.
• Liposuction: Liposuction is a plastic surgery procedure that can be used to remove fat from the back of the neck and around the breasts, but not usually in the stomach (since fat gain caused by lipodystrophy in this area is deep, internal fat). Liposuction tends to be a temporary solution and the unwanted fat frequently returns. It can also be painful and is generally not covered by health insurance plans, although some people have had some success getting reimbursed for this expensive procedure.

Increased lipids

• Switching HIV drugs: There are some HIV drugs that have less of an impact on cholesterol and triglycerides. These include Viramune (nevirapine), Intelence (etravirine), Isentress (raltegravir), and Selzentry (maraviroc). Reyataz and Prezista (darunavir) are also less likely to increase lipids, but both require use with Norvir (ritonavir), and Norvir does increase lipids.
• Lipid-lowering medications: There are drugs available to reduce lipid levels. Some lipid-lowering medications interact with HIV drugs, so have your health care provider review all your medications before prescribing anything.

Increased glucose levels, insulin resistance, and diabetes

• Switching HIV drugs: Switching to other HIV drugs may reduce glucose levels. Speak to your health care provider about this option before stopping any medications.
• Medications: There are some drugs that can be used to treat these conditions, such as Glucophage (metformin).

All symptoms of lipodystrophy

• Diet and exercise: Increasing exercise and improving your diet may help with all of the symptoms of lipodystrophy. Exercise can help reduce fat gain, build muscle, and reduce elevated lipid and glucose levels.

Lowering the amount of saturated fats (found in animal products) may help reduce cholesterol levels. Lowering the amount of fats and carbohydrates may help reduce triglyceride levels. Some health care providers recommend more fiber in the diet to help control insulin resistance and help decrease stomach fat.

While there is no definite proof that these methods will improve lipodystrophy, there is no down side to eating right and exercising. It is a good idea to speak with a nutritionist or dietician about the steps you can take to improve your diet and exercise habits.

See the TWP sheets on lipodystrophy treatments, nutrition, and exercise for more information.

If you are experiencing lipodystrophy it is especially important to take care of your body. Keep all of your doctor’s appointments, get regular lab tests, and tell your doctor about any changes in the way you feel or in your body shape. Recording body measurements and weight on a regular basis, whether or not you are taking HIV medications, may give you valuable information down the road.

Some of these body shape changes and metabolic problems have been linked with heart disease and strokes in HIV+ people, so make sure you are monitored closely. Other factors also contribute to the risk of heart attacks and strokes, including high blood pressure. If you have high blood pressure, make sure it is treated. You can also support your body, and especially your heart, with a healthy diet, regular exercise, and giving up smoking.

Even though the physical changes of lipodystrophy can cause emotional distress, no researcher has suggested that people with lipodystrophy should stop taking their HIV medications. If you are concerned about your appearance, speak to your health care provider before making any changes to your HIV medication schedule that might jeopardize your health.