A parent's long-term tablet and the eyes: hydroxychloroquine and other medicines that need an eye check

Mum has taken a tablet every day for years, for lupus or rheumatoid arthritis, and it keeps her joints and her energy going. Then someone at the pharmacy or the rheumatology clinic mentions that she needs an eye check as well. This page is for the son or daughter who wants to know why, what the check looks for, and what the family should and should not do.

One rule comes first, and the page repeats it: keep taking the medicine. Nothing here is a reason to stop it, cut it down or change it. That decision belongs to the doctor who prescribed it. What a family can do is bring the medicine list to the eye check and tell the prescriber about any change in vision.

Why would a tablet for lupus or arthritis need an eye check?

Because hydroxychloroquine can, in some people, slowly damage the retina after years of use. The retina is the light-sensing layer at the back of the eye. The NHS says that people who have taken it for a long time, or who are at higher risk of eye problems, will have regular eye check-ups to look for retinopathy, which means damage to the retina.

The reason for checking at fixed times is that there is no warning. The American Academy of Ophthalmology (AAO) said in 2016 that the aim is to find retinopathy before it can be seen on an ordinary look at the back of the eye, and that the damage is not reversible and has no current treatment.

Its 2025 revision adds that the retina often looks normal for years, and that toxicity can then appear at an unpredictable time. Early change causes no symptoms, so the check cannot wait until Mum complains.

The check exists to catch change early. Until then the tablet keeps doing the job it was prescribed for, so Mum keeps taking it.

How common is it, and who is at higher risk?

Uncommon in the first years, and more likely the longer the tablet is taken. The AAO's 2016 paper gave the risk at the recommended dose as under 1% up to five years and under 2% up to ten years, rising to almost 20% after twenty years. That is the reason the checks carry on for as long as she takes the tablet.

The AAO lists four things that raise the risk: a high dose, a long time on the medicine, kidney disease, and tamoxifen. Its 2025 revision adds starting the tablet at an older age. The Royal College of Ophthalmologists (RCOphth) lists a dose above 5 mg per kg of body weight a day, tamoxifen and kidney impairment. So tell the eye doctor if Mum has kidney disease or takes tamoxifen. The prescriber works out the dose from her weight. It is not something to adjust at home.

One more point for a Malaysian family. The AAO says Asian patients often show damage away from the very centre of the retina, so the tests are meant to look wider than the middle.

When should the first eye check happen, and when do the yearly checks start?

That depends on which guidance a clinic follows, and the published guidance does not agree on every point. We do not blend the numbers. Here is what each one says.

• AAO, 2016: a baseline look at the back of the eye, to rule out existing disease of the macula (the central retina). Yearly screening begins after five years for people on acceptable doses without major risk factors.
• RCOphth, 2020: baseline testing before starting is no longer recommended. Yearly monitoring starts after five years of hydroxychloroquine and continues each year while she takes it. It can start after one year if there are extra risk factors, such as a very high dose.
• AAO, 2025 revision, which replaces the 2016 paper: a baseline exam soon after starting, with an OCT scan and fundus autofluorescence. Yearly screening during use, which may be deferred in the first five years if there are no significant risk factors.

Which one her clinic follows is for her doctors. The RCOphth says the prescribing doctor is responsible for making sure monitoring happens. If Mum has taken the tablet for years and nobody has mentioned an eye check, ask the prescriber at the next visit when it is due and who is arranging it. Do not stop the tablet while you wait.

What does the eye check involve?

Mostly scans of the retina, and sometimes a visual field test. The AAO's 2016 paper names automated visual fields and OCT (optical coherence tomography, a scan of the layers of the retina) as the primary tests. The newer guidance moves toward imaging: the RCOphth says monitoring should use OCT and widefield fundus autofluorescence, and the AAO's 2025 revision calls OCT and wide-pattern fundus autofluorescence the primary tests, with visual fields as a confirmatory one.

Our page on the glaucoma check for a parent explains the visual field test and the nerve scan in plain words. The AAO also says a questionable result should be repeated or confirmed, so that a medicine is not stopped without good reason.

What about the TB medicine ethambutol?

Ethambutol is one of the tablets used for tuberculosis (TB), and it can affect the optic nerve, the cable that carries sight from the eye to the brain. EyeWiki, an online eye reference, describes painless loss of central vision in both eyes, and says a change in colour vision can be the first sign, usually between red and green. It can begin soon after starting, and typically appears between 1 and 36 months in.

EyeWiki lists a higher dose, longer treatment, age over 65, high blood pressure and kidney disease as raising the risk, and advises an eye examination before starting, then regular checks of central vision. An expert consensus paper adds that colour vision can still be normal early, and says patients should see an ophthalmologist immediately if they notice any visual disturbance.

So ask Mum now and then whether she reads as easily as before and whether colours look the same, and tell her TB doctor the same day if anything has changed. Do not stop ethambutol yourselves. The NHS says to take TB medicines until the course is finished, even if you feel better, and that stopping early could let TB return. EyeWiki says the eye doctor should contact the prescribing doctor directly before it is stopped. The two doctors decide together.

Do long-term steroid tablets or inhalers affect the eyes?

They can. The NHS names problems with the eyes, such as glaucoma or cataracts, among the serious side effects of steroid tablets, and says higher doses and longer use raise the chance. Glaucoma here means a rise in the pressure inside the eye that can damage the optic nerve. A cataract is a clouding of the lens.

A StatPearls review adds detail. Steroid tablets carry less risk to eye pressure than steroid eye drops, but the risk is still meaningful with long-term use. Inhaled and nasal steroids usually have a smaller effect at standard doses, although a high dose may still matter.

The pressure rise is often silent and found on a routine eye exam, and prolonged steroid use can cause a type of cataract at the back of the lens. Higher risk goes with existing glaucoma or a family history of it, high short-sightedness, diabetes, and connective tissue or inflammatory disease, so Mum's own condition may be on that list.

The NHS is clear on the other side: do not stop steroid medicine without talking to your doctor first. If a grandchild is on long-term steroids, our page on eye checks for children on long-term steroid medication covers it. If glaucoma runs in the family, read who should be checked and from what age.

What should we bring and say at the eye check?

Bring the whole medicine list, with the name, the dose and the start date of each, plus her glasses. Say what she takes for lupus, arthritis, TB or anything else, how long she has taken it, and whether she has kidney disease or diabetes. The eye doctor may not otherwise know what the tablet is. The AAO says decisions about stopping hydroxychloroquine are made jointly by the patient, the eye doctor and the prescribing doctor, so that a risk such as a lupus flare is managed.

The sources read for this page cover hydroxychloroquine, ethambutol and steroids. Other medicines may also call for eye checks, so ask the prescriber or the pharmacist whether any of Mum's tablets do. Dr Chan sees adults as well as children, and this page explains who is seen. A sudden loss of sight in one eye is not a medicine check but an emergency, covered in sudden loss of vision in one eye in a parent.

Common questions

References

1. American Academy of Ophthalmology · Recommendations on screening for chloroquine and hydroxychloroquine retinopathy (2016 revision), Ophthalmology 2016 · pubmed.ncbi.nlm.nih.gov
2. American Academy of Ophthalmology · Recommendations on screening for hydroxychloroquine retinopathy (2025 revision), Ophthalmology 2026 · pubmed.ncbi.nlm.nih.gov
3. American Academy of Ophthalmology · Revised guidance for patients exposed to chloroquine, hydroxychloroquine · www.aao.org
4. The Royal College of Ophthalmologists · Hydroxychloroquine and chloroquine retinopathy: recommendations on monitoring (2020) · curriculum.rcophth.ac.uk
5. NHS · Hydroxychloroquine · www.nhs.uk
6. EyeWiki · Ethambutol optic neuropathy · eyewiki.org
7. PubMed Central · Ethambutol toxicity: expert panel consensus for the primary prevention, diagnosis and management of ethambutol-induced optic neuropathy · pmc.ncbi.nlm.nih.gov
8. NHS · Tuberculosis (TB) treatment · www.nhs.uk
9. NHS · Steroid tablets and injections · www.nhs.uk
10. StatPearls (NCBI Bookshelf) · Steroid-Induced Glaucoma · www.ncbi.nlm.nih.gov

By Dr Chan Li Yen. General information only. It does not replace a consultation. If you are worried about your child's eyes or vision, please see an eye doctor.