Symptoms

Effective HIV treatment has transformed the outlook for people with HIV.

Researchers have been able to predict that many people taking HIV treatment will live well into old age. People diagnosed with HIV now, who start treatment at the recommended time, are likely to have the same life expectancy as their HIV-negative peers.

Soon after HIV treatment became available in the late 1990s, the amount of serious HIV-related illness seen in the UK dropped dramatically and has stayed at low levels. The serious illnesses that can develop when a person with HIV has a seriously weakened immune system (a CD4 cell count of 200 or below) are called opportunistic infections (because they take the opportunity of the body’s weakened immunity to develop) and many of these infections are called AIDS-defining illnesses.

Without treatment, HIV is a serious, life-threatening infection and it is therefore associated with illness. There are still about 800 new AIDS-defining illnesses diagnosed in the UK each year. However, most of these are in people who have only had their HIV diagnosed after they have had HIV for many years and have a very weak immune system.

In the UK, it is usually recommended that you start HIV treatment when your CD4 cell count is around 350, and in some cases even higher. Starting treatment at this time has been shown to cut the risk of developing HIV-related illnesses, as well as some that are not considered to be HIV-related. Serious HIV-related illnesses are very rare in people who are taking HIV treatment and whose HIV is suppressed.

Not everyone with HIV is on HIV treatment, and people taking HIV treatment can still become ill due to other causes. This section will help you have an understanding of the range of symptoms and illnesses that are more commonly seen in people with HIV.

Brief details have been provided of some of the most common AIDS-defining illness and there are links to further information on aidsmap.com about them. There is also information on some non-HIV-related infections and illnesses which occur more frequently in people with HIV and, once again, you can find out more information about these by clicking on the links.

Many of the symptoms outlined below can be caused by routine cold and flu viruses or stomach bugs, so HIV isn’t necessarily the reason you’re feeling unwell. If, however, your symptoms last for more than a few days, particularly if you have a low CD4 cell count, it makes good sense to go and see your doctor. Then the cause of your illness can be identified and the right treatment provided. It’s also worth remembering that illnesses can affect people in different ways, so don’t regard the list of symptoms as a complete list.

Fevers and tiredness

These are sometimes called ‘constitutional’ symptoms because they affect the whole body. They can be the result of your body’s attempt to fight an infection, and so can be caused by many different illnesses. They can also be caused by allergic reactions to some medicines.

Most people have a body temperature around 37 degrees Celsius (98.6 degrees Fahrenheit). A fever (high temperature) is a temperature of 38C (100.4F) or over. In children under five, a fever is a temperature of over 37.5C (99.5F). If you have a raised temperature for more than a few days, or if it reaches 39 degrees, it's a good idea to see your doctor.

Taking paracetamol can help reduce fevers. Make sure you follow the instructions on the packet. It should be used with caution by people with liver problems.

Tiredness (or fatigue) can be caused by your body fighting an infection – but it can obviously have other causes as well. Normally tiredness is nothing to worry about and will improve with rest. However, if it doesn't go away or gets worse, or if you have other symptoms as well, speak to your doctor about it.

Night sweats

These are a common problem, and may be either mild and infrequent or quite severe, resulting in the need to change your bed linen or clothes.

Many people experience night sweats and they are often nothing to worry about. It's a good idea to first ask yourself if your sweats are being caused by something other than illness, such as the weather becoming warmer or having the heating on too high. Anxiety is also a common cause of night sweats.

If your night sweats are accompanied by a fever, an infection is often the cause. Colds and flu can cause night sweats, but so can more serious health problems. If you're not taking HIV treatment, HIV infection itself can cause night sweats. Make sure you mention them to your doctor.

Try to sleep in a well-ventilated, cool room. This should help alleviate night sweats that do not have a medical cause.

If an infection is the cause, this needs to be diagnosed, so mention night sweats to your doctor. Diagnosis will mean that you can receive appropriate treatment.

Practical measures such as taking an aspirin or paracetamol before sleeping may be helpful, but paracetamol should be used carefully if you have liver problems. It's important not to take more than the recommended daily dose.

If there's no infection causing your night sweats and you're not taking anti-HIV treatment, the cause could be HIV itself. If you need to start HIV treatment, then it's likely that any night sweats will go away as your viral load falls and CD4 cell count increases.

Changing sheets because of night sweats can be tiring and annoying. Sleeping with a towel on the pillow and on top of the sheet may help avoid the need to do this so often, particularly if your sweats are not severe.

Coughs and chest and breathing problems

Cough and chest problems are very common health conditions in the general population and can be can caused by colds, flu, smoking, asthma and bronchitis.

A lot of coughs go away by themselves and don't require any special treatment.

However, people with HIV with weak immune systems are particularly vulnerable to some very serious chest infections such as PCP (a type of pneumonia) and tuberculosis (TB). Coughs and chest symptoms, such as shortness of breath, lasting more than a few days need to be taken seriously, particularly if you also have a high temperature or night sweats.

It’s also worth knowing that breathing problems, often accompanied by a rash, can be a symptom of a severe allergic reaction to certain medicines.

Finding out the cause of coughs and chest problems is important so you can receive the right treatment. Standard tests used if you have chest or breathing problems include:

  • Listening to your lungs with a stethoscope. This will enable your doctor to hear if there is any inflammation or fluid in the lungs. 
  • Checking your temperature. A high temperature can be a sign that you have an infection, and if you have a raised temperature for several days or your temperature goes above 39 degrees, you should see your doctor as soon as possible.
  • A blood count. A blood sample is taken to see if your red blood cells, which carry oxygen, are depleted.
  • A chest X-ray. This will show if there is inflammation or fluid on the lungs.
  • A sputum culture. A sample of spit or phlegm is taken to see if there is any sign of infection.

In some circumstances, you may need to have a bronchoscopy. This involves passing a very small tube down with a tiny camera attached down a nostril or the throat into the lungs. A small tissue sample, called a biopsy, may also be taken. Bronchoscopies are only performed if doctors are uncertain what the cause of a chest problem is. They can be uncomfortable and if you need to have one you will normally be offered a sedative such as Valium.

The type of treatment you receive will depend on the cause of your problem. Sometimes you may need no treatment at all as the cough will go away by itself. Bacterial chest infections are likely to need treatment with antibiotics, and if the infection is serious this could mean going into hospital for a few days. TB is treated with a combination of specialist antibiotics. Other causes of chest and breathing problems may require other types of treatment.

There may also be cases when other treatment can help lessen the symptoms caused by chest problems, and these should be discussed with you if you need them.

Skin problems

Although skin problems are common in people with HIV, in most cases they aren't serious and should be little more than annoying or inconvenient. There is a wide range of treatments available that may be helpful to you.

It's also important to know about skin symptoms that have more serious causes so you can seek help if you need to, and get the right treatment.

A rash can be the result of an allergic reaction to a medicine. If you've just started a new treatment and develop a rash, you would be well advised to speak to a member of your healthcare team as soon as possible. If a rash is accompanied by any other symptoms, such as difficulty breathing, a fever or stomach problems, it is very important you contact your HIV clinic as soon as possible, or your local A&E department out of hours.

A common skin complaint in people with HIV is dermatitis. This can cause scaly patches on the skin and can be successfully treated with ointments or liquids put into the bath.

Sometimes infections can be the cause of skin problems. Small, painful blisters around the mouth, genitals and anus can be caused by the herpes simplex virus. Herpes can be controlled using aciclovir (for more information, see the section on Sex).

Small colourless bumps on the skin with a pearly top can indicate that you have molluscum contagiosum (molluscum for short). They are caused by a virus and can affect anyone, but people with a low CD4 cell count may be particularly prone to them. They can spread around the body quite rapidly. They can go away by themselves after about 12 to 18 months, although it may take longer if your CD4 cell count is low. They can be treated with creams or liquids, or by freezing them off or with surgery. All of these treatments can cause some scarring. If you developed molluscum before starting HIV treatment you may well find that they go away by themselves once your immune system strengthens.

Small cauliflower-like growths are probably warts. These often go away by themselves. A lot of people with HIV are infected with the anal and genital warts virus, human papillomavirus (HPV). It's a good idea to have a regular sexual health check-up so any warts can be spotted. They can be treated by freezing or with an ointment.

Some strains of HPV can cause cell changes to the anus or cervix that can lead to cancer.  Having this diagnosed early means that you can receive the most appropriate treatment and care with the best chance of success. Vaccines that protect against the strains of HPV that cause pre-cancerous cell changes have been developed. There’s mounting evidence that immunisation would be beneficial for a large number of people with HIV. However, at the moment the priority group to receive is the vaccine is school-aged girls. You can find out more about this in NAM’s factsheet on HPV.

Black, purple or dark brown spots on the skin can be a sign of the AIDS-defining cancer Kaposi’s sarcoma (KS). Thanks to HIV treatment, it's now very rare, but cases are still seen. To have KS properly diagnosed, a sample of skin from the affected area needs to be biopsied. HIV treatment can be an effective therapy for mild cases of KS, and treatment is available for more advanced cases, so if you notice any unusual marks on your skin, make sure you bring them to your doctor’s attention.

Mouth problems

Good dental hygiene including twice-daily brushing and flossing once a day will help you avoid most routine mouth problems.

However, people with HIV, particularly those with a low CD4 cell count, can be vulnerable to oral thrush, a fungal infection. Keep an eye out for white patches in the mouth. These can be painful, particularly if they are at the top of the throat, and can also cause an unpleasant taste. Oral thrush is easy to treat with a course of anti-fungal medication or lozenges. Once you start taking HIV treatment and your immune system gets stronger, you’ll probably find that you stop getting thrush.

If the white patches in your mouth are slightly hairy, then you might have an infection called oral hairy leukoplakia. This is caused by a virus and is treated with the anti-viral drug aciclovir. Again, you’re likely to stop getting it once your immune system gets better after starting HIV treatment.

Herpes blisters can affect the lips and mouth and can be treated with aciclovir. Mouth ulcers are more common in people with HIV, particularly people with low CD4 cell counts, but mouthwashes can help relieve the pain they cause.

There's some evidence that people with HIV might be more vulnerable to cancers of the mouth, throat and neck, but the number of such cancers is very small. This is related to infection with some strains of the human papillomavirus (HPV) – the virus that can also cause genital warts. It’s a good idea to report any wart-like growths or unusual patches of skin, or pain in the mouth or throat, to your doctor so the cause can be identified and the most appropriate treatment offered.

Eating, stomach and digestion problems

Pain or difficulty swallowing can be caused by oesophageal problems. The oesophagus is the tube that runs from the throat to the stomach, and that food passes down.

Pain in the abdomen, nausea (feeling sick), vomiting (being sick), indigestion (heartburn), reflux, flatulence (wind), diarrhoea and constipation can all indicate stomach or digestive problems.

Remember that most anti-HIV drugs can cause digestive problems, but these tend to pass with time and drugs can be taken to help control the symptoms.

You should still take problems like these seriously. If they are a treatment side-effect, the chances are your doctor can do something about them. If there are other causes, it is important that these are identified. If digestive problems last more than a few days, or you start to lose weight without trying to, see your doctor.

Eye problems

It's unlikely that HIV will cause any eye problems unless you have a very weak immune system. It's a good idea to have a periodic eye test, just like everybody else, to check your vision.

If you have a very low CD4 cell count (below 100), you should take problems with your vision very seriously. Blurred vision, blind spots, eye pain, or spots moving across the eye can all be symptoms of CMV (cytomegalovirus). This can be treated, but treatments work best if any eye damage is caught early. CMV used to be quite common in people with HIV, but effective HIV treatment means it is now rare.

Headaches and mental health

Everybody gets headaches from time to time. Most headaches aren’t serious. They can be treated with over-the-counter painkillers, but make sure you follow the instructions for taking them.  Lifestyle changes, such as getting enough sleep and drinking plenty of fluids, can also help.  

If you have pain in your head lasting more than a few days, or any headaches which don’t go away with normal painkillers such as paracetamol or ibuprofen, see your doctor.

Many anti-HIV drugs can cause headaches. These side-effects tend to go away after time, and if they don’t and you find that the symptoms you are experiencing lower your quality of life, then speak to your doctor. You may be able to take some other tablets to help you with your symptoms, or it may be possible to change to another anti-HIV drug which does not have this side-effect.

Mental health problems

Mental health problems can affect anybody, but it seems that people with HIV are more likely to experience a range of mental health problems, not least because the groups most affected by HIV in the UK (gay men, refugees, migrants and drug users) are already more likely to have mental health problems.

For more information on mental health problems, see the section Emotional wellbeing and mental health.

Some anti-HIV drugs can cause side-effects that can affect your mood, or make you feel a little 'spaced out', vague or forgetful, as can certain infections, particularly if you have a low CD4 cell count. Efavirenz (Sustiva, also in the combination drug Atripla) in particular can affect mood and sleep. These side-effects tend to go away after time, and if they don’t and you find that the symptoms you are experiencing lower your quality of life, then speak to your doctor. You may be able to take some other tablets to help you with your symptoms, or it may be possible to change to another anti-HIV drug which does not have these side-effects.

Brain impairment

Brain infections, such as toxoplasmosis and meningitis, are rare since the introduction of effective HIV treatment, as are AIDS-related dementia and lymphoma involving the brain. If you experience symptoms of confusion, memory loss, poor concentration, speech problems or blackout tell your doctor immediately, particularly if you have a low CD4 cell count. If an infection is causing your symptoms, the sooner it is diagnosed, the sooner you'll be able to receive the right treatment and care.

Pain

Just like everybody else, people with HIV will experience some sort of physical pain most days, for all sorts of reasons. This will usually be mild, go away by itself and not cause any real problems.

However, pain in both the short term (acute), and long term (chronic), can be severe enough to lower quality of life and can cause emotional distress.

The causes of pain in people with HIV (just like in the general population) are varied. Short-term pain can be caused by infections, injuries, the after-effects of medical procedures, or may even have no apparent cause. Nevertheless, the pain will usually go as the body recovers.  

Long-term pain can similarly have a range of causes. It can be caused by other long-term health problems, including some relating to age, such as arthritis, or to the chronic effects of an injury. For people with HIV, there can be long-term pain as a result of the side-effects of treatment (usually related to older treatments that are no longer commonly used) or because of damage done before treatment was started.

Some anti-HIV drugs can cause you to feel generally unwell, involving, for example, muscle pain and headache, but these side-effects should reduce and go away over time, and can be treated while they are still present.

A painful longer-term side-effect that can be caused by older anti-HIV drugs ddI (Videx) and d4T (Zerit) is called peripheral neuropathy. This involves damage to the nerves in the feet and lower legs, and occasionally the hands. Neither of these drugs is used very much now, mainly because drugs that don't cause such side-effects are now available.

Some protease inhibitors can cause painful side-effects, for example, stomach cramps. Kidney stones can be a side-effect of the now rarely used indinavir (Crixivan).

The fat wasting caused by some older anti-HIV drugs, including AZT (zidovudine, Retrovir) and d4T (stavudine, Zerit) , particularly in the buttocks, can cause discomfort sitting. These drugs are no longer recommended for routine HIV treatment if other treatment options are available.

Pain that has minor causes will often go away quite quickly without you taking any action. However, both acute and chronic pain can be distressing and disabling, and can also be a warning sign that you have a serious medical problem. Therefore, it is important to tell your doctor if you are experiencing distressing or constant pain so he or she can find out the underlying causes and treat them.

Treating underlying medical problems can help address pain in the long term. If one of your anti-HIV drugs or other medicine is causing painful side-effects, it may be possible to change to medicines that don’t have such side-effects.

Pain-killing medication of varying strengths can also be used in both the short and long term to control pain. For short-term pain, aspirin and paracetamol are painkillers available over the counter without a prescription. Make sure you check for any possible interactions with your anti-HIV drugs orany other medication you are on.

If the pain lasts for more than a few days, or is very severe, see a doctor. Never take more than the recommended daily dose of any pain medication. Over–the-counter pain medication should be used very cautiously if you have liver problems.

Managing chronic pain can be more complex. You might need to receive treatment from a specialist pain clinic, which your doctor can refer you to.

There’s nearly always a way to control pain. Talk over your options with your doctor, when you will have an opportunity to discuss the side-effects of pain medication and possible interactions with other drugs you are taking.

Physiotherapy can be a good way of providing both short- and long-term solutions to skeleto-muscular pain – your doctor can provide you with a referral. Some people find complementary therapies such as acupuncture, massage and osteopathy are helpful. You will probably have to pay for these, and bear in mind that there may always not be the same levels of regulation of complementary therapies as there for conventional medicine.

Your mood can affect how you experience and cope with pain. Sometimes, people find that getting help for their emotional wellbeing also helps them manage physical pain.

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.