Patient information from BMJ

HIV: long-term complications

Last published:Jul 06, 2020

Modern treatments mean that HIV can be managed much better than in the past, so that many people with the infection can live long and fairly healthy lives.

But having HIV can make you more likely to have some other health problems, some of them serious. Being aware of these problems, and talking to your doctor about any symptoms you have, can help you stay as healthy as possible.

What is HIV?

HIV stands for Human Immunodeficiency Virus. If you are infected by the HIV virus it damages your immune system. This makes it harder to fight off some types of infection, and easier for some cancers to develop.

Without treatment, HIV infection can lead to AIDS. AIDS stands for Acquired Immune Deficiency Syndrome.

AIDS is the name given to the group of infections and illnesses that develop as the immune system is weakened by the HIV virus. Without treatment, AIDS usually develops between 6 and 9 years after infection with HIV.

What does 'long-term complications' of HIV mean?

Many medical conditions have what are called 'complications'. It just means that if you have a certain health problem, it makes you more likely to get certain other ones.

For example, people with diabetes are more likely to have heart problems. This is because diabetes damages your blood vessels.

HIV is a complicated condition. It affects your immune system and the way many of the organs in your body work. This means that there are many possible complications.

How likely are complications?

It’s not possible to say what will happen to you as an individual. Some people are affected by several complications, while some people are not affected by any. And some complications are more common than others.

But remember, while the list of complications might look scary, these are just possible problems: they might not happen to you at all.

What we do know is that learning about possible complications, and about their signs and symptoms, can help you to stay healthy.

What are the main complications I should know about?

The main long-term complications of HIV are listed below. Some are caused by the effect on the body of the HIV virus. But some are linked to the effects of antiretroviral treatment (ART), the main treatment for HIV.

This is not really surprising, as all medicines can cause side effects in some people. The important thing to remember is that knowing about these complications can help you to stay as healthy as possible.

Low testosterone

Many men with HIV have low levels of testosterone, the 'male hormone'. As well as a reduced sex drive, low testosterone can lead to other health problems, including weaker bones and muscles.

Treatment is fairly simple, and is called testosterone replacement therapy (TRT). It involves taking testosterone supplements. But the treatment can have side effects, including an increased chance of heart problems.

So your doctor should explain the possible benefits and risks of this treatment so you can decide whether it’s right for you.

Heart disease

Doctors know that people with HIV are roughly twice as likely as other people to get heart disease. So your doctor will keep an eye on your heart health: for example, you should have regular blood pressure tests.

Keeping your heart in good shape also means eating a healthy diet and being as active as you can.

Blood clots

You’ve probably heard of deep vein thrombosis (DVT), possibly linked to long-haul flights. DVT happens when a blood clot forms in a vein, often in the leg, then travels to one of your lungs where it can cause serious problems.

People with HIV have a slightly increased chance of DVT. Many people with DVT don’t have any warning symptoms. But some people have swelling and pain in the calf or thigh of one leg. The affected part of your leg may also feel hot and turn red or purple.

Kidney disease

People with HIV have an increased chance of getting kidney disease, or of their kidney disease getting worse if they already have it.

Kidney disease is more likely to affect older people with HIV, and people of African origin.

The symptoms of kidney disease are a little vague. But they include tiredness, nausea, and urinating more or less than usual. If you notice these symptoms, tell your doctor.

Weakened bones

Bone weakness (osteoporosis) can be caused by HIV or by the treatment, and it increases your chance of having a fracture. Many people with HIV have low levels of vitamin D, which can lead to weaker bones.

You can help prevent osteoporosis by staying as active as possible, and by not smoking or drinking alcohol. Your doctor might also recommend vitamin D supplements.

But if you have HIV you should always talk to your doctor before taking any supplements - even vitamins.

Some cancers

Before ART medicines were available, many people with HIV would quickly progress to having AIDS. Many people would die from cancers common in people with AIDS, such as non-Hodgkin’s lymphoma and cervical cancer.

People with HIV are still more likely to be affected by cancer compared with other people. But ART greatly reduces this risk, and the types of cancer that affect people with HIV are now similar to those that affect people without HIV.

Liver disease

Many people with HIV have hepatitis. This means that they have an increased chance of liver problems, which can be serious and sometimes life-threatening.

Treatments for some types of hepatitis have improved a lot in recent years, which could improve the outlook for many people.

Mental changes

HIV can affect people’s mental health in several ways. Some people find that it can sometimes affect their memory or their ability to think clearly. And some people are affected by depression.

Talk to your doctor if you are affected by depression. There are treatments that can help.

Diabetes

Type 2 diabetes seems to be slightly more common in people with HIV. It’s possible that taking ART medicines might actually increase your chance of getting diabetes.

Common symptoms of type 2 diabetes are feeling thirsty all the time, and urinating a lot more than usual. If you are concerned about diabetes, talk to your doctor.

Hearing problems

Hearing problems seem to be more common among people with HIV, but it’s not clear why. If you start to notice that your hearing is getting worse, talk to your doctor, as there are good treatments that can help.

Infections

HIV affects your immune system, so it’s not surprising that people with HIV have an increased chance of some types of infection, including tuberculosis and other lung problems, and candidiasis (thrush).

Being aware of infections is a vital part of managing HIV, so your doctor should have discussed this with you right at the start of your treatment. For more information, see our leaflet HIV: common infections in people with HIV.

What will happen?

It’s not possible to say what will happen to individual people with HIV. As with all illnesses, some people do better than others.

Because of ART, people with HIV live much longer than they used to. In many countries, the average life expectancy of people who start ART at age 20 is now between 63 and 67 years old.

But HIV is still a serious illness that can cause lifelong difficulties for many people. If you have HIV you should see your doctor regularly, and be aware of the symptoms of other problems that can happen.

Most people find that living well with HIV is easier if they have the support of the people closest to them. Talking about HIV with your loved ones can be an important part of staying well.

Staying healthy when you have HIV doesn’t just depend on taking your medications properly.

Good nutrition is crucial when you have an illness that affects your immune system. Talk to your doctor or nurse about how to eat well.

Practising safe sex helps to keep your sexual partners safe. That means using condoms, and educating yourself about other safe sex practices.

It’s much easier to stay healthy with HIV when you don’t use drugs, drink alcohol, or smoke. All these things can affect your immune system and make you weaker.

If you can’t stop injecting drugs, talk to your treatment team about how to get clean needles and syringes. Your doctor might be able to help you get drug treatment.

Many organisations and support groups offer help and information to people with HIV. For example, in the UK, the Terrence Higgins Trust (tht.org.uk) has been providing these services for many years.

Your doctor might be able to help you find support in your area, or you can easily search online.