Without treatment, HIV is a serious, life-threatening infection and it is therefore inevitably associated with illness. The availability of effective HIV treatment has transformed the outlook for people with HIV, however, and doctors are now optimistic that many people with HIV will be able to live a near-normal life-span. HIV treatment hasn’t been around long enough for us to yet now just how long this might be, but using the information we already have, researchers have predicted that many people with HIV will be able to live well into their 70s.
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 weak 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 infection are called AIDS-defining.
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.
You are recommended to start HIV treatment when your CD4 cell count is around 350. Starting treatment at this time has been shown to cut the risk of developing HIV-related and even non-HIV-related illness. So serious HIV-related illnesses are very rare in people taking successful HIV treatment.
But not everyone with HIV needs to take HIV treatment, and people taking HIV treatment can still become ill due to a number of causes, so it makes good sense to have an understanding of the range of symptoms and illnesses that are common 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 so the cause of your illness can be identified and the right treatment provided. It’s also worth remember that illnesses can affect people in different ways, so it makes good sense not to regard the list of symptoms as a sort of tick 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, and can also be caused by allergic reactions to some medicines.
Most people have a body temperature between 36.5-37.5 degrees. If you have a temperature for more than a few days, or if it reaches 39 degress then it's a good idea to go and see your doctor.
Taking paracetamol can help reduce fevers, but 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 obviusly 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 yif ou have other symtpoms as well, it makes good sense to speak to your doctor about it.
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. So 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 then HIV itself can cause night sweats. Make sure you mention them to your doctor.
What to do
Make sure that you sleep in a well-ventilated, cool room. This should help to 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. If an infection is the cause, its diagnosis will mean that you can receive appropriate treatment.
Practical measures such as taking an aspirin or paracetamol before sleeping may be helpful, but paracemetol should be used carefully if you have liver problems and 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 with, particularly if your sweats are less severe.
Cough, chest and breathing problems
Cough and chest problems are very common 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. So 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 your temperature goes above 102, 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 like 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 special antibiotics. Other causes of chest and breathing problems may require other types of special 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 should you need them.
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.
if you have skin problems it's good to know that 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. It is especially important to do this if a rash is accompanied by any other symptoms, such as difficulty breathing, a temperature or stomach problems.
A common skin complaint in people with HIV is seborrhoeic dermatitis. This can cause scaly patches on the skin, and can be successfully treated with ointments.
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). You are particularly likely to get this if you have a low CD4 cell count, and they can spread around the body quite rapidly. They are treated by freezing them off or by surgery. If you develop them 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, 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 a special ointment. Some strains of the anal and genital wart virus can cause cell changes to the anus or cervix that can lead to cancer. Spotting this 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 cervical cancer have been developed. But they are only effective in people who haven't yet been infected with the virus and there is no information on how effective they are in people with HIV or in men.
Black, purple or dark brown spots on the skin can be a sign of the AIDS-defining cancer Kaposi’s sarcoma (KS). It's now very rare, thanks to HIV treatment, 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 special 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.
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 single dose 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 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 human papilloma virus (HPV) - the virus that causes genital warts. It therefore makes good sense 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.
Stomach and digestion problems
Pain or difficulty swallowing can be caused by oesophageal problems. The oesophagus is the tube that food passes down. Pain in the abdomen, nausea, vomiting, diarrhoea and constipation can all indicate stomach 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.
But 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 idenitified. If digestive problems last more than a few days, or you start to lose weight, then it makes good sense to see your doctor.
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.
Headaches and mental health
Everybody gets headaches from time to time. However, 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.
If you have any problems with your head lasting more than a few days, or any headaches which don’t go away with normal painkillers such as paracetamol or ibuprofen, then it's a good idea to go see your doctor.
Some anti-HIV drugs (efavirenz in particular) can affect the mood and sleep. Many other 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 these side-effects.
Brain infections, such as toxoplasmosis and meningitis, are rare since the introduction of effective HIV treatment. So too is AIDS-related dementia and lymphoma involving the brain. But 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.
Depression is more common amongst people with HIV. For more information see the section, Mental and emotional wellbeing.
Just like everybody else, people with HIV will experience some sort of physical pain most days. But this is usually very mild and goes away by itself and doesn't 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 go as the body recovers.
Long-term pain in people with HIV can be caused by infections, other long-term heath problems, chronic injury or the side-effects of treatment.
A painful side-effect that can be caused by 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 safer drugs that don't cause such side-effects are now available.
Some protease inhibitors can also cause painful side-effects, for example, stomach cramps, and kidney stones can be a side-effect of the now rarely used indivinavir. The fat wasting caused by some anti-HIV drugs (AZT and d4T - neither of these drugs is now recommended for routine HIV treatment if other treatment options are available), particularly in the buttocks, can cause discomfort sitting. Sometimes people taking anti-HIV drugs report feeling generally unwell, involving, for example, muscle pain and headache.
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 an anti-HIV drug(s) 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. Asprin, paracetamol and ibuprofen are painkillers available over the counter without a prescription. 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 difficult. 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, and you should 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 a short- and a long-term solution to skeleto-muscular pain, and your doctor can provide you with a referral.