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Longer-term side-effects

Kidney problems

Effective HIV treatment has significantly reduced the risk of serious kidney disease in people with HIV. However, most anti-HIV drugs can cause some damage to the kidneys, so your routine HIV care will involve regular tests to check on the health of your kidneys.

Tenofovir (Viread, also in the combination pills Truvada, Atripla and Eviplera) is processed by the body through the kidneys, and there is evidence that it can cause damage to the kidneys over time. UK treatment guidelines recommend that people with moderate or severe existing kidney disease should not take tenofovir if there is a suitable alternative. People with other risk factors for kidney disease (for example high blood pressure or diabetes) might have an increased risk of developing kidney problems when taking this drug.

If you develop kidney problems, it might be necessary to change your HIV treatment or to have additional treatment for this.

Metabolic changes

Anti-HIV drugs can disrupt your metabolism – the way your body processes the substances it needs to work properly.

Specifically, anti-HIV drugs can cause abnormal levels of lipids – blood fats, or cholesterol and triglycerides – and also blood sugar.

Cholesterol

There are two types of cholesterol: high-density lipoprotein or HDL cholesterol, often called ‘good’ cholesterol, and low-density lipoprotein (LDL), or ‘bad’, cholesterol.

Levels of HDL cholesterol are often reduced in people with HIV and other chronic illnesses. High levels of LDL cholesterol indicate that you are at greater risk of heart disease, and increases of LDL cholesterol are often seen in people taking anti-HIV drugs.

High rates of LDL cholesterol can cause narrowing and hardening of the arteries, increasing the risk of heart disease, heart attack and stroke. If you have high LDL cholesterol, the following factors increase your risk of heart disease even further:

  • Smoking.
  • High blood pressure.
  • A family history of heart disease.
  • Being physically unfit.
  • Being aged over 45 for men and over 55 for women.
  • Diabetes or insulin resistance.
  • High blood sugars.
  • Being very overweight, particularly with a lot of fat around the waist.
  • Use of stimulant recreational drugs such as cocaine or amphetamines.

It is particularly important to monitor LDL cholesterol levels if you are taking a protease inhibitor.

Triglycerides

Triglycerides are fatty acids derived from fat, sugar and starches in food. These travel through the bloodstream and are stored in tissues or in the liver. Levels of triglycerides can be increased by some anti-HIV drugs.

Glucose

Glucose is a form of sugar found in the blood. High levels of glucose can increase the risk of heart disease. Levels of glucose can be increased by some anti-HIV drugs.

Insulin is the substance produced by the body to control glucose levels in the blood. Some people taking anti-HIV drugs need to produce more insulin to keep their blood levels of glucose normal. This is called insulin resistance.

You will have your blood glucose checked as part of your regular HIV monitoring.

Symptoms of metabolic change

Abnormal levels of fats and sugars in the blood can sometimes cause symptoms including:

  • Tiredness.
  • Dizziness (due to high blood pressure).
  • Loss of concentration.
  • More frequent urination.
  • Thirst.

However, some people don’t notice any symptoms, even when they’ve had abnormal levels of fats and sugars for a long time and are at greater risk of heart disease.

Heart disease and anti-HIV drugs

Levels of fats in your blood may start to rise when you start HIV treatment, particularly if you are taking certain protease inhibitors. Sometimes the size of the increase will mean you’ll need to take some action to reduce it. This will probably start with making changes to your diet and doing more exercise, but might also involve taking medication to control blood fats. You can find out more about how to change your diet in NAM’s booklet Nutrition.

Large studies of people taking protease inhibitors have shown that they have a slight, but nevertheless significant, increase in their risk of heart disease. Some (but not all) studies have also suggested that abacavir (Ziagen, also in the combination pills Kivexa and Trizivir) might increase the risk of heart disease, particularly for people who already have risk factors for heart problems.

If you have any existing risk factors for heart disease, your HIV treatment should be carefully chosen to ensure that it doesn’t raise the risk even further. And a ‘risk’ of heart disease does not automatically mean that heart problems will develop. A lot can be done to prevent this happening.

Your cholesterol, triglyceride and glucose levels should be monitored each time you have a routine clinic visit. This will mean that your doctor can spot any warning signs early.

There is also a lot you can do to reduce the risk of developing heart disease. This includes eating a healthy diet, with lots of fresh fruit and vegetables and without too much fat, taking regular exercise, and not smoking.

You can find out more about eating well, managing metabolic changes and taking exercise in NAM’s booklet Nutrition.

In some circumstances your doctor might prescribe what are called lipid-lowering drugs. These are used to reduce the risk of heart disease and prevent existing heart disease from getting worse. They include statins (to lower cholesterol) and fibrates (to lower triglycerides and also cholesterol). Some statins can interact with protease inhibitors, and both statins and fibrates can cause their own side-effects, so your doctor will monitor you to see if these are developing.

Liver problems

Having a healthy liver is important for people with HIV as most anti-HIV drugs are processed by the liver. Some people have experienced liver problems when taking HIV treatment. In many cases, they had other risk factors, such as also having hepatitis B or C, having an opportunistic infection or being treated with other medicines that can harm the liver.

Having a low CD4 cell count when starting HIV treatment, especially if you have also had an opportunistic infection, and the treatment for some of those infections, can cause liver problems. And some aspects of your lifestyle can affect the health of your liver, such as drinking heavily or using recreational drugs. Your HIV clinic will be able to offer advice and support if you are worried about your alcohol or drug use.

Your routine HIV care will involve blood tests to monitor the health of your liver. If you do develop liver problems, possible options include changing your HIV treatment or having additional treatment for your liver problems.

Changes in your diet may also help, so try to eat lots of fresh fruit and vegetables, avoid fatty food (as the liver is the organ that breaks down fat in your body), and eat slow-release starchy foods, such as bread and potatoes. NAM’s booklet Nutrition provides information on eating well.

Lipodystrophy

Lipodystrophy is a syndrome which causes changes in body shape. It was originally thought that the cause was protease inhibitors, but it now seems that some drugs in the NRTI class may be the main cause. The long-term use of the drugs most associated with lipodystrophy – AZT and d4T – is now avoided as much as possible. Anti-HIV drugs now prescribed in the UK only rarely cause changes in body shape.  

Sometimes people find that they gain weight after starting HIV treatment. This weight gain is more likely to be due to improved health as the result of being on treatment, or to the most common reasons people put on weight – eating too much and/or not doing enough physical exercise. You can find out more about maintaining a healthy weight in NAM’s booklet Nutrition.

Body fat changes seen in people taking HIV drugs can involve fat loss, fat gain, or a mixture of both. This may result in: increased waist size (without rolls of fat); increased breast size; fat gain around the back of the neck and upper back; fat gain around the neck and jaw; facial wasting, especially of the cheeks; wasting of the buttocks; prominent veins in the arms and legs (because of fat loss). Some people have developed small lumps of fat called lipomas, often in the limbs or trunk.

The abdominal fat gain in lipodystrophy is made up of hard fat that accumulates around the internal organs, causing the belly to feel taut and pushed out. This is different to the squeezable fat gained if people put weight on through over-eating or lack of exercise.

Even when people have stopped taking the treatment associated with fat loss, the body fat can be slow to return, and may not come back at all. Fat loss from the face can be repaired in a number of ways. The most commonly used technique involves injections of a product called polylactic acid (New Fill or Sculptra) into the affected areas. This treatment is often available from HIV clinics so ask your doctor or another member of your healthcare team if this treatment is available to you.

Surgery can be an option for removing fat accumulation around the neck, and lipomas can also be surgically removed if needed.

Other possible treatments involve human growth hormone or anabolic steroids. Again, you can talk to your doctor about these.

Diet, regular cardiovascular exercise and weight training have been shown to have some positive effect on fat gain. You can find out more about eating well and the sort of exercise that can help with lipodystrophy in NAM’s booklet Nutrition.

People who have experienced body fat changes have sometimes found this stigmatising – a visible sign that they are taking HIV treatment. The bodily changes can also affect the way that people feel about themselves. If you have developed lipodystrophy and feel this way, acknowledging your feelings and talking to somebody about them can be very helpful. Your HIV clinic should be able to talk to you about accessing talking therapies if you think it would be helpful for you.

Peripheral neuropathy

Nerve damage (neuropathy) can be caused by HIV. It can also be caused by some anti-HIV drugs, and by some treatments for opportunistic infections: some antibiotics, TB drugs, and therapies for Kaposi’s sarcoma.

The drugs most closely linked to peripheral neuropathy are d4T and ddI, no longer routinely used in the UK, and ddC, which is no longer available. Peripheral neuropathy is now a rare side-effect of most anti-HIV drugs. The risk is very small and it is usually dependent on another factor increasing the risk, such as having a CD4 cell count under 100, having had neuropathy before, having another condition that can cause it (such as diabetes), older age or drinking heavily.

Overall, effective HIV treatment reduces the risk of peripheral neuropathy developing.

The nerves which can be damaged by anti-HIV drugs are in the limbs (and very rarely, male genitals), so this side-effect is called peripheral neuropathy.

Peripheral neuropathy usually involves damage to the nerves in the lower legs and feet or, less commonly, the hands. The symptoms can range from mild tingling and numbness through to excruciating pain that makes it impossible even to wear a pair of socks. Usually both sides of the body are equally affected.

Other symptoms of neuropathy can include dizziness, diarrhoea and sexual dysfunction in men (inability to obtain or sustain an erection).

If you do develop drug-related neuropathy, it is important to discuss this with your doctor. It may be necessary to stop taking the anti-HIV drugs that are contributing to the neuropathy. Once the drug has been stopped, the neuropathy may continue to get worse for a couple of weeks, but it will often go away over time. If you have been on the treatment for a long time, there may be some permanent nerve damage.

In the meantime, standard painkillers will help with mild pain. If these aren’t enough, your doctor can prescribe other treatments to reduce the pain. These include different types of drugs (some anticonvulsants and some antidepressants) that act as painkillers. Patches (called Qutenza) and cream containing capsaicin, a substance made from chilli peppers, may provide some pain relief.

A supplement called L-acetyl carnitine may help. Some people report that acupuncture has provided relief, although this is unproven scientifically. There is evidence that cannabis (marijuana) can help, as it is thought to have pain-killing properties. Bear in mind that cannabis use is illegal, that a safe dose for short-term or long-term use isn’t known, and that there can be other health implications. Soaking feet in cold water, avoiding tight shoes and socks, avoiding long periods of standing and walking, and massage may provide relief.

If you have reduced sensation in your feet, there are some practical precautions you can take. Test the temperature of a bath with your elbow rather than your feet, check the soles of your feet regularly for damage, be careful when first wearing new shoes and avoid walking barefoot.

As there are several possible causes of nerve damage, it is very important to tell your doctor if you have tingling, numbness or pain in your feet so that the cause can be properly investigated.

Bone problems

Loss of bone density is more common in people with HIV than in the general population. There is a link between HIV itself and bone loss, possibly caused by HIV-related inflammation.

There is also a link between the anti-HIV drug tenofovir (Viread, also in the combination pills Truvada, Atripla and Eviplera) and bone problems. Some research has suggested there is also a possible link between bone loss and protease inhibitors.

Overall, the benefits of being on HIV treatment outweighs an increased risk of bone loss. In many cases, people had other risk factors for bone problems. These include being older (and for women, having gone through the menopause), smoking, heavy drinking, being underweight, lack of exercise, a family history of bone loss, and low testosterone levels.

Your regular HIV monitoring will include blood tests to check the health of your bones. You may have additional tests as you get older, especially if you have other risk factors for bone loss. You can find out more in NAM’s booklet CD4, viral load & other tests.

There are actions you can take to reduce the risk of bone loss, and to help slow it down or deal with it if it does occur. These include eating a healthy diet, with enough calcium and vitamin D, getting some sunlight on your skin (for vitamin D production) and doing weight-bearing exercise. You can find out more about all of these in NAM’s booklet Nutrition.

Side-effects

Published July 2013

Last reviewed July 2013

Next review July 2016

Contact NAM to find out more about the scientific research and information used to produce this booklet.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.