What lupus medication causes blindness? The link between hydroxychloroquine and retinopathy

October 10, 2025 •

4 min read

An estimated one-third of people with systemic lupus erythematosus experience ophthalmic symptoms, but the most significant risk of irreversible vision loss is tied to a specific medication. Long-term use of hydroxychloroquine (Plaquenil), a cornerstone of lupus therapy, can cause a rare but serious condition known as retinopathy, which can lead to permanent vision loss if not detected and managed properly.

Quick Summary

Long-term use of the lupus medication hydroxychloroquine can cause irreversible retinal damage called retinopathy. This risk increases with higher doses and prolonged use. Early detection through regular ophthalmologic screening is vital to prevent permanent vision loss. Dosage must be carefully managed, and alternative therapies exist for high-risk patients.

Key Points

Hydroxychloroquine (Plaquenil) Risk: Long-term use of the antimalarial drug hydroxychloroquine is the primary lupus medication associated with a rare but serious risk of irreversible blindness.
Retinopathy Mechanism: The drug can cause retinal toxicity by accumulating in the retina and damaging its light-sensitive cells over time, sometimes creating a 'bull's-eye' pattern around the macula.
Key Risk Factors: Higher daily doses relative to body weight, longer treatment duration (over 5 years), kidney or liver disease, and concurrent use of tamoxifen increase the risk of retinopathy.
Proactive Monitoring is Crucial: Early detection through regular ophthalmologic screening using tests like SD-OCT and visual field analysis is vital, as early retinopathy is often asymptomatic.
Irreversible Damage: Any vision loss resulting from hydroxychloroquine retinopathy is often permanent, making prevention through careful monitoring and dosing the priority.
Alternative Therapies: For patients at high risk or with confirmed retinopathy, alternative lupus medications like methotrexate, mycophenolate mofetil, or biologics can be used effectively.

The role of hydroxychloroquine in lupus treatment

Hydroxychloroquine, also known as Plaquenil, is a common and important medication for managing systemic lupus erythematosus (SLE). It acts as both an antimalarial and a disease-modifying anti-rheumatic drug (DMARD), helping to regulate the immune system in autoimmune conditions. By inhibiting inflammatory chemicals, it helps alleviate typical lupus symptoms like pain, swelling, and fatigue.

Despite its effectiveness, prolonged use of hydroxychloroquine can rarely lead to retinopathy, a serious side effect involving damage to the retina that can result in vision loss. The drug can build up in the retina, potentially affecting photoreceptor cells and the retinal pigment epithelium. In advanced cases, this damage can create a distinctive bull's-eye pattern in the macula, indicating permanent impairment.

How hydroxychloroquine causes retinopathy

While the exact mechanism is not fully understood, it's thought that hydroxychloroquine binds to melanin in the retinal pigment epithelium. This can disrupt cell function and lead to the death of retinal cells. Over time, this damage can form a 'bull's-eye' pattern around the macula, central to sharp vision, often signifying permanent damage.

Risk factors for retinopathy

The risk of developing retinopathy from hydroxychloroquine is rare but is influenced by several factors. These include:

Daily dosage: A daily dosage that is too high, particularly relative to body weight, increases the risk.
Duration of use: The risk is low in the first five years but rises significantly after 20 years.
Kidney or liver issues: Impaired function of these organs can raise drug concentration and toxicity risk.
Existing retinal conditions: Having other eye diseases affecting the retina is a risk factor.
Age: Starting treatment after age 60 increases risk.
Tamoxifen use: Taking tamoxifen simultaneously significantly elevates the risk.

The importance of screening and monitoring

Early detection is critical to preventing permanent vision loss, as retinopathy often has no symptoms initially. The American Academy of Ophthalmology (AAO) recommends a comprehensive screening protocol.

Typical monitoring tests

Baseline exam: A thorough eye exam within the first year of starting hydroxychloroquine is recommended to establish a baseline.
Annual screening: For most patients, yearly screening begins after five years of treatment. Those with increased risk factors may need earlier monitoring.

Advanced imaging techniques

Modern screening methods offer sensitive ways to detect early retinal changes, even before symptoms appear. These include:

Spectral Domain Optical Coherence Tomography (SD-OCT): Provides detailed images of the retina's structure.
Visual Field Testing (10-2): Checks for blind spots in central vision.
Fundus Autofluorescence (FAF): Images the RPE to identify damaged areas.
Multifocal Electroretinography (mfERG): Measures the retina's electrical response to light, assessing its function.

Managing retinopathy and vision changes

If hydroxychloroquine retinopathy is diagnosed, the medication is typically stopped to prevent further damage. However, any vision loss that has already occurred is often irreversible. The condition may even continue to worsen for a time after stopping the drug due to its presence in the body.

Comparison of lupus medication risks


Medication Type	Examples	Primary Lupus Benefit	Potential Ocular Side Effects	Risk of Permanent Blindness	Management and Monitoring
Antimalarials	Hydroxychloroquine (Plaquenil)	Reduces disease flares, fatigue, and joint pain	Retinopathy, corneal deposits (reversible)	Rare but serious, can be irreversible	Regular ophthalmologic screening with SD-OCT and visual field testing
Corticosteroids	Prednisone	Quickly reduces inflammation during flares	Cataracts, glaucoma (increased eye pressure)	Possible over time if uncontrolled glaucoma develops	Routine eye pressure checks, regular cataract screening
Immunosuppressants	Methotrexate, Mycophenolate	Used for moderate-to-severe disease and organ involvement	Increased risk of eye infections, rare optic nerve issues	Extremely rare	Depends on specific drug; generally focused on overall health and infection risk
Biologics	Belimumab (Benlysta)	Targets specific parts of the immune system	Generally fewer ocular side effects, potential for infections	Extremely rare	Primarily systemic monitoring for infections and other side effects

Alternatives to hydroxychloroquine

If hydroxychloroquine must be discontinued due to retinal toxicity or high risk, several alternative treatments are available, chosen based on the individual's lupus severity and affected organs.

For skin and joint symptoms, options include methotrexate or mycophenolate mofetil.
Mycophenolate mofetil is often used for lupus affecting the kidneys.
For severe, active disease, biologic agents like belimumab may be considered, sometimes in combination with other medications.

Conclusion

While hydroxychloroquine is a fundamental treatment for lupus, the potential for blindness from retinopathy, though rare, is a significant concern. Mitigating this risk requires a collaborative approach between patients and healthcare providers, emphasizing strict adherence to monitoring guidelines. Regular ophthalmologic exams, including advanced imaging, are crucial for detecting early signs of retinal toxicity before irreversible damage occurs. If retinopathy is found, stopping the medication can help preserve remaining vision. Fortunately, various alternative medications can effectively manage lupus in high-risk patients. Open communication with doctors and ophthalmologists about any visual changes is essential for safe and effective long-term lupus care.

Frequently Asked Questions

Hydroxychloroquine retinopathy is a rare but serious condition where long-term use of the medication causes damage to the retina. If left unchecked, this damage can be irreversible and lead to permanent vision loss.

The most effective way to prevent vision loss is through regular eye screenings with an ophthalmologist, starting after five years of treatment or sooner if you have additional risk factors. Early detection allows for the medication to be stopped before significant damage occurs.

Early retinopathy is often asymptomatic. When symptoms do appear, they may include blurred central vision, difficulty reading, trouble seeing at night, and changes in color vision (particularly reds appearing washed out).

If significant retinal toxicity is confirmed, the medication is typically discontinued to prevent further damage. In some mild cases, your doctor may consider continuing with a reduced dose, but this must be done with careful consideration and strict monitoring.

For most patients, an annual eye exam is recommended starting after five years of use. For those with higher risk factors (such as kidney disease, tamoxifen use, or a daily dosage too high for their weight), monitoring may be required sooner.

Yes, many alternative treatments exist, including corticosteroids for inflammation flares and immunosuppressants or biologic agents for more severe disease. Your doctor will determine the best alternative based on your specific condition.

Yes, chloroquine is more retinotoxic than hydroxychloroquine, which is why it is used less frequently today. Monitoring protocols for chloroquine typically begin much sooner than for hydroxychloroquine.