ConditionEyes & vision
Hydroxychloroquine (Plaquenil) Retinopathy
Hydroxychloroquine retinopathy is damage to the retina, the light-sensing layer at the back of the eye, caused by long-term use of hydroxychloroquine (Plaquenil) for lupus, rheumatoid arthritis and similar conditions. It is uncommon in the first 5 years but becomes more likely with higher doses and longer use. Early damage causes no symptoms and is permanent, so yearly screening tests are used to catch it before vision is affected.
Also called: Plaquenil retinopathy, Plaquenil toxicity, hydroxychloroquine retinal toxicity, chloroquine retinopathy, bull's eye maculopathy
At a glance
- What it is
- Toxic damage to the retina's light-sensing cells from years of hydroxychloroquine or chloroquine.
- How common
- Rare before 5 years of use. With recommended doses, risk is under 2% at 10 years and about 20% after 20 years.
- Main risks
- Dose over 5 mg per kg of real body weight per day, more than 5 years of use, kidney disease, and tamoxifen.
- Symptoms
- None early. Later, missing patches in central vision, trouble reading and reduced night or color vision.
- Screening
- Baseline eye exam, then yearly tests from 5 years (sooner with risk factors), using visual fields and OCT scans.
- Treatment
- Stopping the drug. Damage does not reverse.
When to get help
See a doctor within a day or two
- Missing letters or words when reading, a ring-shaped blind area around the center of vision, or new distortion while taking hydroxychloroquine
- An eye doctor reports early retinal changes on your screening tests (contact your prescribing doctor before your next dose)
Book a routine appointment
- You have taken hydroxychloroquine for 5 years or more and have not had a screening test in the past year
- Starting hydroxychloroquine (book a baseline eye exam within the first year)
- New kidney disease or starting tamoxifen while on hydroxychloroquine
- Blurred near vision in the first weeks of treatment (often a temporary focusing effect, but worth checking)
What hydroxychloroquine retinopathy is
Hydroxychloroquine is an antimalarial medicine widely used for lupus, rheumatoid arthritis, Sjögren's syndrome and some skin diseases. It is generally safe and very useful, and lupus guidelines recommend it for nearly everyone with the disease.
Over years, the drug builds up in the pigment cells of the retina and damages the photoreceptors (the cells that detect light). In most people the damage starts in a ring around the center of the macula, the area used for reading and detail. In many people of Asian descent it starts further out, beyond the major blood vessels. Once cells are lost they do not recover, and damage can even progress for a time after the drug is stopped.
The advanced appearance is called bull's eye maculopathy: a ring of damaged pigment around a spared center. Screening aims to find the problem long before this stage.
Risk factors
| Risk factor | Why it matters |
|---|---|
| Daily dose above 5 mg/kg of real body weight | The strongest predictor. Risk rises steeply at higher doses |
| Duration over 5 years | Toxicity is cumulative |
| Chronic kidney disease | The drug is cleared by the kidneys, so levels rise |
| Tamoxifen use | Increases retinal risk substantially |
| Existing retinal or macular disease | Makes screening harder and adds vulnerability |
| Chloroquine instead of hydroxychloroquine | Chloroquine is more toxic. The dose limit is 2.3 mg/kg/day |
Your doctor uses your actual weight to choose a safe dose. Never change the dose on your own: lupus and arthritis can flare dangerously if the medicine is stopped abruptly.
Symptoms
Early retinopathy has no symptoms, which is why screening exists. As damage grows, people notice:
- Missing letters or parts of words while reading
- A patchy or ring-shaped blind area near the center of vision
- Blurred vision or difficulty with fine detail
- Reduced night vision, glare sensitivity, or faded colors
- Flashes or shimmering in advanced cases
Hydroxychloroquine can also cause harmless deposits on the cornea and, briefly at the start, trouble focusing. These are different from retinopathy.
Screening: the Plaquenil eye exam
The American Academy of Ophthalmology recommends:
- Baseline exam within the first year of treatment, to look for existing eye disease.
- Annual screening from 5 years of use if you have no major risk factors.
- Annual screening from the start if you have kidney disease, take tamoxifen, take high doses, or have other retinal disease.
The key tests are:
- Automated visual field testing: usually a 10-2 pattern, or a 24-2 or 30-2 pattern in Asian patients to cover the outer retina.
- Spectral-domain optical coherence tomography (SD-OCT): a painless scan that shows thinning of retinal layers.
- Fundus autofluorescence and multifocal electroretinography (mfERG) to confirm suspicious findings.
A simple eye chart and retinal photograph alone are not enough, because vision can be normal on the chart even when damage exists. Abnormal findings are usually confirmed with a second test before the drug is stopped.
What happens if retinopathy is found
There is no treatment that repairs the retina. The ophthalmologist and the prescribing doctor decide together:
- Definite toxicity: stop hydroxychloroquine and switch to another medicine for the underlying disease.
- Early or uncertain changes: repeat tests, reassess dose and kidney function, and weigh the risk to vision against the risk of disease flares.
Found early, vision usually stays good for life. Advanced damage can lead to permanent central vision loss. Low-vision services help with magnifiers, lighting and reading aids.
For other medicines that can harm the retina, see drug-induced retinopathy. Other causes of central vision changes include macular degeneration.
Frequently asked questions
How common is Plaquenil retinopathy?
At recommended doses of 5 mg/kg/day or less, retinopathy affects fewer than 2% of users in the first 10 years and under 1% in the first 5. Risk rises after that and reaches about 20% after 20 years. Higher doses and kidney disease increase risk considerably.
How often do I need an eye exam on hydroxychloroquine?
Have a baseline exam within the first year, then yearly screening starting after 5 years of use. If you have kidney disease, take tamoxifen, use higher doses or have other retinal disease, yearly screening should begin straight away. Screening must include visual fields and an OCT scan.
Is hydroxychloroquine retinopathy reversible?
No. Lost retinal cells do not regrow, and mild progression may continue for a while after stopping the drug. That is why screening aims to catch changes before symptoms appear. Stopping at an early stage usually preserves good, useful vision.
Should I stop hydroxychloroquine if I am worried about my eyes?
Not without talking to your doctor. Stopping can cause serious flares of lupus or arthritis, and the drug also protects against blood clots and organ damage in lupus. Keep up with screening. If tests show toxicity, your doctors will switch you to another treatment.
What are the first signs of hydroxychloroquine toxicity in the eyes?
Usually there are none: early damage appears only on OCT scans and visual field tests. When people do notice symptoms, they typically miss letters while reading or see a patchy ring of reduced vision around the center. Any new reading difficulty should be reported promptly.
Sources
This guide was written from current patient and clinical guidance, including:
- American Academy of Ophthalmology: Recommendations on screening for chloroquine and hydroxychloroquine retinopathy (2016 revision)
- Royal College of Ophthalmologists: Hydroxychloroquine and chloroquine retinopathy: recommendations on monitoring
- American College of Rheumatology: Hydroxychloroquine (Plaquenil) patient fact sheet
- MedlinePlus: Hydroxychloroquine