- Most people living with HIV don't experience eye problems related to HIV.
- Sight problems are more likely to occur in people with very low CD4 counts.
- The most common HIV-related eye problems are HIV retinopathy, optic neuropathy, cataracts, dry eyes, infectious retinitis, and uveitis.
- The best way to prevent serious eye problems related to HIV is to take HIV treatment.
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Can HIV affect my eyesight?
HIV can affect your eyesight, but this is much less common than it used to be thanks to effective anti-HIV treatment. However, some people with HIV will develop eye problems. These are usually caused by:
- HIV affecting the blood vessels and nerves in your eye
- opportunistic infections such as cytomegalovirus (CMV)
- medication that you’re taking to treat an opportunistic infection.
You’re much more likely to experience HIV-related eye problems if you have a very low CD4 count, if you’re not taking HIV treatment, or if your HIV treatment isn’t working properly.
The most common HIV-related eye problems are HIV retinopathy, optic neuropathy, cataracts, dry eyes, infectious retinitis, and uveitis. There is more information about these conditions on this page.
HIV retinopathy is a condition where the blood vessels in your retina become damaged. This causes small haemorrhages (bleeding) and cotton wool spots (damage to the nerve cells). HIV retinopathy can affect your eyesight, but the amount of vision loss is usually small. You might not notice these changes in your eyes. They are more commonly found during an eye test.
What causes HIV retinopathy?
It’s not always known for sure why the blood vessels in your eye become damaged. It’s thought it might be the result of changes in your blood that are caused by HIV. HIV retinopathy can happen if you’re taking anti-HIV treatment but it’s more common in people with CD4 counts below 100 who aren’t taking treatment or whose treatment isn’t working well.
HIV retinopathy by itself rarely leads to serious sight loss but it increases the risk of more severe eye problems such as infectious retinitis.
There is no specific eye treatment for HIV retinopathy. If you’re not taking anti-HIV treatment then starting treatment should help. If you are already taking treatment your doctor might want to check it’s working properly.
Optic neuropathy is a condition where the optic nerve in your eye becomes damaged. Your optic nerve sends visual signals from your retina to your brain. Optic neuropathy causes the colours you see in your affected eye to get fainter, or ‘washed out’. If it’s more serious, or it isn’t treated it can lead to significant sight loss.
What causes optic neuropathy?
Optic neuropathy most commonly develops if you:
- have an opportunistic infection such as toxoplasmosis (a parasite infection)
- are taking medications such as ethambutol, which is used to treat tuberculosis (TB)
- have syphilis
- have cryptococcus (a common cause of meningitis).
Optic neuropathy was also a side effect of an older anti-HIV medication called didanosine, but this isn’t used anymore.
In some people living with HIV, there is no clear cause of optic neuropathy. It’s thought it could happen as a result of changes in the blood vessels caused by HIV, in a similar way to HIV retinopathy. The treatment of optic neuropathy depends on what is causing it. Early diagnosis and prompt treatment give the best results.
Cataracts and dry eyes
Cataracts and dry eyes are very common conditions that affect many people. People living with HIV seem more likely to develop cataracts and dry eyes. It’s thought that this is because of changes in your eyes that are caused by HIV. However, as they are both very common conditions, you might also experience them for reasons unrelated to HIV such as getting older.
Cataracts are cloudy patches on the lens of your eye. People living with HIV seem to be more likely to develop them at a younger age compared to the general population. The risk of developing cataracts is higher if you’ve had a very low CD4 count in the past.
People living with HIV are also more likely to experience dry eyes. This seems to be because the virus can affect the way your eyes make tears. If you have dry eyes your doctor or optician can give you advice about how to manage your symptoms. You might be prescribed eye drops or creams to help.
CMV retinitis is an infection that causes severe damage to your retina. Early symptoms of CMV retinitis can include:
- blurred vision
- new 'floaters' (spots that move around in your line of sight)
- a blind spot in your vision
- flashes of bright light.
CMV can lead to retinal damage or even a detached retina, which needs to be treated with surgery.
What causes CMV retinitis?
CMV retinitis is caused by cytomegalovirus, which is an opportunistic infection. Many people with HIV have active CMV infection and don’t know they are infected. However, you’re much more likely to develop problems because of CMV, including retinitis, if you have a very low CD4 count (below 50).
You may be offered anti-CMV medication to try and prevent CMV retinitis from developing if you have a low CD4 count, or if a blood test finds signs of CMV.
If your CD4 count is low you should take any symptoms of CMV retinitis very seriously and contact your doctor. CMV retinitis might only damage one eye first but the infection will usually spread to the other eye if it isn’t treated. CMV retinitis can cause serious, permanent, loss of sight.
If your CD4 count is above 50, a vision problem is unlikely to be CMV retinitis, but you should still tell your doctor about your symptoms. The sooner an eye problem is diagnosed and treated, the less damage it is likely to do.
How is CMV retinitis treated?
Treatment of CMV retinitis aims to stop the damage to your retina from getting worse. Sight loss caused by CMV retinitis can't be corrected by glasses because your eye is permanently damaged.
Medications such as valganciclovir, ganciclovir, cidofovir, and foscarnet can slow down or stop CMV from doing any more damage to your eyes. These medications can be taken in different ways, including tablets, injections into a vein (intravenous infusion), and injections into your eye.
Once the CMV retinitis is stable (not getting any worse), you will continue to take medication to stop it from reactivating. You might be able to stop taking this medication once anti-HIV treatment has strengthened your immune system. You should speak to your doctor about whether this is safe for you to do.
Uveitis is inflammation (swelling) in the middle layer of your eye. It causes:
- a dull pain in your eye, particularly when focusing
- sensitivity to light
- new ‘floaters’ (spots that move around in your line of sight)
- blurred vision.
Your symptoms might start suddenly or they might take a few days to develop. The sooner uveitis is treated, the less damage it will do.
What causes uveitis?
Uveitis can develop if:
- you have an opportunistic infection such as toxoplasmosis (a parasite infection)
- you are taking cidofovir to treat CMV
- you are taking the antibiotic rifabutin which is used to treat opportunistic infections such as tuberculosis and MAC (this is more likely if you take ritonavir or cobicistat)
- you experience immune reconstitution inflammatory syndrome (IRIS) when you start anti-HIV treatment – there is more information on this below.
Uveitis can also be caused by syphilis and tuberculosis.
What is immune recovery uveitis?
Some people develop a condition called immune reconstitution inflammatory syndrome (IRIS) within the first few months of taking anti-HIV medication. You’re more likely to develop IRIS if you have a low CD4 count when you start your treatment. IRIS causes inflammatory symptoms as your immune system gets stronger. If it affects your eyes, it can cause a condition called immune recovery uveitis.
It’s thought that immune recovery uveitis develops when your immune system becomes strong enough to react to a previously treated CMV infection that was treated before you began anti-HIV treatment. It causes the same symptoms as other types of uveitis and is usually treated in the same way.
How is uveitis treated?
If you have uveitis, you might be prescribed anti-inflammatory treatments such as steroids to help with your symptoms.
If your uveitis is caused by an infection then treatment of the infection will often help. If your uveitis is caused by medication, it might be treated by stopping or reducing your dose.
Retinal necrosis is when some of the tissue in your retina dies. Symptoms of retinal necrosis include:
- vision loss
- sensitivity to light
- pain in your eye
Retinal necrosis causes permanent damage to your retina. This causes sight loss because the damage stops your retina from picking up light or because the retina detaches. Detached retinas can sometimes be reattached with surgery but this isn’t always possible.
What causes retinal necrosis?
Retinal necrosis is usually caused by an opportunistic infection. This means you’re much more likely to develop retinal necrosis if you have a low CD4 count. Retinal necrosis is most often caused by the varicella zoster virus, which is a type of herpes. It can also be caused by other herpes viruses.
If you develop retinal necrosis, it’s usually treated with antiviral medication and steroids.
The best way to prevent serious eye problems related to HIV is to take your HIV treatment.
Many things that keep you generally healthy will also help maintain the health of your eyes. Exercise, a healthy diet, not smoking, and not drinking too much alcohol will all help, as will protecting your eyes from direct sunlight.
In the UK, it’s recommended that all adults, whatever their HIV status, have their eyes checked at least every two years. You may be advised to go more often if you’re over 40, if you have certain health conditions, or if you’re at higher risk of some eye problems. If you have a CD4 count under 50 you might be advised to have an eye test every three months.
People with HIV may be more likely to develop sight problems such as glaucoma and cataracts as they get older. If you notice any changes in your eyes or your sight, speak to your doctor or an optician.
If you have permanent loss of vision your HIV clinic can refer you to social services that can help you adjust.
Thanks to Professor Remco Peters and Dr Michael Stewart for their advice.