The Hydroxychloroquine Conundrum: What I Would Weigh Before Taking It
- Posted
- Medically Reviewed by: Mr Mfazo Hove, Consultant Ophthalmic Surgeon
- Author: Mr Mfazo Hove
- Published: October 14, 2026
- Last Updated: October 14, 2026
TL;DR: Before taking hydroxychloroquine, I would weigh its benefits for the condition being treated against the individual risk of permanent retinal damage and the practicalities of reliable long-term eye monitoring. Monitoring aims to identify damage early but cannot prevent it or guarantee detection before vision is affected. Decisions about starting, continuing or stopping treatment should be made with the prescribing specialist.
Why This Question Is Hard
At Blue Fin Vision®, we are often asked to check a patient’s eyes before they start hydroxychloroquine. We offer the core tests that current guidelines recommend:
- Optical coherence tomography (OCT), a scan that shows detailed cross-sections of the retina, the light-sensitive tissue at the back of the eye.
- Wide-pattern autofluorescence imaging, which uses naturally occurring fluorescence to reveal changes across a broad area of the retina and its supporting tissue.
- Visual field testing, which maps how well you see in different parts of your field of vision.
A small number of uncertain cases also need electrodiagnostic testing, specialist tests that measure the retina’s electrical responses to light, for which we refer to a specialist electrodiagnostic department.
The scans are the easy part. The harder part is the conversation that follows. When patients see the full picture, many pause to reconsider the balance, ask further questions or go back to their prescriber for clarification. Some decide not to start; others proceed after discussing their individual benefits and risks with their prescriber.
The purpose of the assessment is to support an informed decision, not to steer patients towards either answer.
The conundrum is simple to state. Hydroxychloroquine is one of the safest and most valuable medicines in rheumatology, the specialty that treats joint conditions and related immune-system disorders. Its retinal toxicity, meaning its potential to damage the retina, is more common than older estimates suggested, the damage is permanent, and monitoring is demanding to deliver well over many years.
Why the Drug Matters
Hydroxychloroquine is used for lupus, rheumatoid arthritis, Sjögren’s syndrome and several skin conditions. Lupus can cause the immune system to attack different parts of the body; rheumatoid arthritis mainly affects the joints; Sjögren’s syndrome commonly causes dry eyes and a dry mouth. It is cheap, well tolerated and does not suppress the immune system in the way many alternatives do.
In lupus, the case for it is strong. It reduces flares, periods when the disease becomes more active, protects against organ damage and thrombosis, the formation of blood clots, and is associated with longer survival.¹ When patients with stable lupus stopped it in a randomised trial, flares were more frequent.² This is why lupus guidelines recommend it for almost everyone with the condition.
So any honest discussion of the eye risk has to start here. For some people, not taking hydroxychloroquine carries risks of its own, and those risks sit outside the eye.
Retinal Toxicity Is More Common Than Older Estimates Suggested
For years, retinal damage from hydroxychloroquine was thought to be rare, because it was only recognised once it was visible on examination. Modern OCT scanning changed that. A landmark 2014 study found retinopathy, damage to the retina, in 7.5% of long-term users.³
A large contemporary cohort with active screening, followed for up to 15 years, provides useful estimates of long-term risk. Overall, 2.5% of users developed retinopathy by 10 years and 8.6% by 15 years.⁴ Risk climbed steeply with dose, measured against actual body weight. The unit mg/kg/day means milligrams of medicine per kilogram of body weight each day:
Average Daily Dose, First 5 Years (Actual Body Weight) | Any Retinopathy by 15 Years | Moderate to Severe by 15 Years |
|---|---|---|
5 mg/kg/day or less | 2.7% | 1.1% |
More than 5 to 6 mg/kg/day | 11.4% | 2.4% |
More than 6 mg/kg/day | 21.6% | 5.9% |
Two things stand out. Risk keeps rising the longer the drug is taken, at any dose. And most cases found by regular screening were mild, which is why the two right-hand columns should not be read as the same outcome.⁴
Personal factors matter too. Older age at starting, female sex, chronic kidney disease (CKD) stage 3 or worse, meaning a moderate or greater reduction in kidney function, and tamoxifen use all increase risk. Tamoxifen is a medicine used to treat and prevent some breast cancers. Starting at 65 or older carried more than five times the risk of starting before 45.⁵
What Monitoring Involves
Two sets of guidance are relevant. The American Academy of Ophthalmology (AAO) published updated recommendations in 2026.⁶ In summary, they advise:
- A baseline examination soon after starting, with fundus examination, an examination of the back of the eye, OCT and autofluorescence, to rule out existing macular disease and provide a comparison for later scans. Macular disease affects the central part of the retina, which provides detailed central vision.
- Annual screening with OCT and wide-pattern autofluorescence as the primary tests, with visual fields and electrodiagnostic tests used to confirm suspected changes.
- Earlier annual screening where significant risk factors exist, with older age at starting now recognised among them. People without risk factors may reasonably defer screening for the first five years.
The Royal College of Ophthalmologists’ 2020 recommendations, which apply in the UK, advise annual monitoring after five years for most patients, and after one year for those at higher risk.⁷ The College removed routine baseline testing after weighing its clinical yield against the resources it requires.
At Blue Fin Vision®, we offer a baseline assessment before or soon after starting. We find a baseline useful because it provides a personal reference against which small later changes can be judged, and it identifies existing macular disease that could make monitoring harder. Later scans can still be interpreted without one.
The Honest Limits of Testing
No single test catches every case, which is why monitoring combines them. In a 2014 series, about 10% of patients with early toxicity had a clear ring of field loss, an area of reduced vision around the centre, while their OCT still looked normal.⁸ That finding is the argument for complementary testing; it is not an estimate of what a modern combined programme misses.
Visual fields, in turn, are subjective and affected by fatigue, concentration and other eye conditions.
This creates grey zones. In one UK monitoring service, 1.6% of long-term users had definite retinopathy, but a further 4.7% had possible retinopathy.⁹ A “possible” result means further testing, not automatic withdrawal. UK guidance recommends continuing treatment while possible toxicity is investigated, to avoid stopping an effective drug unnecessarily.⁷
Testing also depends on expertise. Early changes are subtle, often a slight thinning of one retinal layer just outside the centre. They are best read by someone who looks at these scans regularly, ideally against the patient’s own earlier scans.
If Damage Is Found
There is no treatment that reverses hydroxychloroquine retinopathy. When early signs appear, the decision between stopping the drug and continuing with closer monitoring is made individually, by the patient and their prescriber, weighing the eye findings against the disease being treated.⁶
What happens next depends largely on how early the damage is found. In long-term follow-up, eyes with early or moderate damage stayed largely stable for up to nine years after stopping.
Eyes where the deeper supporting layer (the retinal pigment epithelium) was already damaged kept deteriorating for up to 20 years.¹⁰ Another series found continued progression for at least three years after stopping in severe cases.¹¹
This is the real case for monitoring. In the UK, patients whose retinopathy was found on routine monitoring had better vision and visual fields at diagnosis than those diagnosed after noticing symptoms.¹² Monitoring does not prevent damage. It aims to find it while it is still small enough to have the best chance of stabilising, which is likely but not certain.
"Rarely Causes Blindness" Is Not the Whole Story
Patients are sometimes told that hydroxychloroquine retinopathy rarely leads to blindness. That is true, but blindness is not the only outcome that matters.
The damage typically forms a ring just outside the very centre of vision. Reading acuity, the ability to distinguish small letters, can stay good while that ring affects words, faces and parts of the visual field.
For driving, the Driver and Vehicle Licensing Agency (DVLA) assesses the field of both eyes together, usually with a binocular (Esterman) test, a visual-field test using both eyes, when an assessment is needed.¹³ An abnormal result on a single-eye screening test does not automatically mean losing a licence, but established retinopathy may affect whether someone meets the DVLA’s visual field standards.
For someone whose work depends on driving, fine detail or screens, that would be a significant loss. It belongs in the decision alongside the benefits of the drug.
Who Is Responsible, and Where Can Follow-Up Break Down?
On paper, the answer is clear. In England, arranging monitoring is the responsibility of the doctor who prescribes the drug, usually a rheumatologist, a specialist in joint and related immune-system conditions, or a dermatologist, a skin specialist.¹⁴ The eye service carries out the tests.
In practice, maintaining reliable monitoring across services over many years is difficult. A patient may take hydroxychloroquine for 15 years or more, under a hospital specialist, then a GP, sometimes across several hospitals, with no single system linking prescriptions, doses and eye tests.
A national UK study estimated that between July 2018 and February 2020, only about 2.6% to 5.5% of long-term users who should have been monitored were being reached.¹² That figure was estimated indirectly, from reported cases and published monitoring yields, and describes provision at that time; services have developed since.
When one NHS area later reviewed every patient on the drug, it found gaps in monitoring and in how prescribing information was shared between services, and built a shared register to close them.¹⁵
Fragmented pathways that span many services over many years can contribute to missed monitoring. The safest arrangement is one where the plan is written down, shared with everyone involved, and held by you as well as your doctors.
What a Monitoring Register Should Hold
We propose a practical way to improve continuity: a single register of every patient taking hydroxychloroquine, held by the prescribing service and shared with the GP and eye service. The NHS area mentioned above built exactly this after its review.¹⁵ To make monitoring reliable over 15 years or more, each entry needs:
Information | Why It Matters |
|---|---|
Condition being treated and start date | Duration is one of the two strongest risk factors |
Every dose change, with date and body weight at the time | Risk depends on dose per kg of actual body weight, which changes as weight changes |
Daily dose in mg/kg and cumulative dose, the total amount taken over time | Doses above 5 mg/kg/day carry much higher long-term risk⁴ |
Age at starting | Older age at initiation raises risk⁵ ⁶ |
Kidney function, measured by estimated glomerular filtration rate (eGFR), an estimate of how well the kidneys filter the blood, updated regularly | Kidney disease raises drug levels and retinal risk⁵ |
Tamoxifen use, and any existing macular or retinal disease | Tamoxifen increases toxicity risk; existing macular or retinal disease can make monitoring harder⁷ |
Risk category and when monitoring should start | Determines whether annual tests begin at year one or year five |
Date, provider and tests of each eye assessment | Shows whether monitoring actually happened, and allows comparison over time |
Result of each assessment: normal, possible or definite retinopathy | The categories UK guidance uses to communicate results to prescribers⁷ |
Date the next test is due, and who will arrange it | Makes responsibility for the next assessment explicit |
Missed appointments and recall actions taken | Identifies patients drifting out of monitoring before years are lost |
Date stopped, and the reason | Ends routine monitoring, or flags the need for continued eye follow-up if toxicity was found |
If you take hydroxychloroquine, it is reasonable to ask your prescriber whether you are on a register like this. Keeping your own copy of the same information, including your eye test letters, is a simple safeguard if you move area or change doctor.
What I Would Weigh, and Why
Mr Mfazo Hove, Consultant Ophthalmic Surgeon
Patients often ask me directly: “Would you take it?” They deserve a straight answer, so here is mine.
For me, a drug that puts central vision at risk, with damage that may continue after stopping and monitoring that cannot promise to catch it in time, would need a life-threatening condition to justify it. That is a personal threshold, shaped by what I see in clinic and by how much my own work depends on my sight.
It is not a clinical recommendation, and it should not be used as a reason to stop or decline treatment without discussing the consequences with your prescribing specialist.
It is not a rule for anyone else. Another person may reasonably accept the retinal risk to relieve substantial disability, or to prevent their disease from causing future harm, long before it becomes organ-threatening. Lupus guidelines recommend hydroxychloroquine for most people with the condition, partly for that preventive reason.¹⁶ Those are good reasons to reach a different conclusion from mine.
I can explain the potential effects on your eyes and assess your retinal risk. Your prescriber knows what your disease may do to the rest of you. The question to take back to them is this: how much does this drug matter for my condition, and is there an alternative that would work as well?
Frequently Asked Questions
Can I take a lower dose instead?
Possibly. Risk is closely linked to dose by actual body weight, and doses at or below 5 mg/kg/day carry much lower risk.⁴ Whether a lower dose controls your condition is a question for your prescriber.
Will I notice symptoms early?
Usually not. Early damage is silent, which is why monitoring exists.
Does my diabetic eye screening cover this?
No. Diabetic screening uses retinal photographs, which do not detect early hydroxychloroquine damage. You need a dedicated assessment.¹⁵
What if I already have a macular condition?
It can make monitoring harder, because existing changes may mask new ones. This is one reason we find a baseline assessment useful.
Hydroxychloroquine Monitoring at Blue Fin Vision®
A monitoring assessment at Blue Fin Vision® includes:
- A consultant review of your eye history, dose, weight, kidney function and other medicines.
- OCT and wide-pattern autofluorescence imaging, with baseline visual field testing, repeated if needed, and referral for specialist electrodiagnostic testing where results remain uncertain.
- A discussion of your personal retinal risk, the limits of testing and what ongoing monitoring involves.
- A written report to you, your prescribing doctor and your GP, setting out your dose by body weight, your risk factors and risk category, the date your next test is due, and who arranges it.
A full hydroxychloroquine assessment costs £750. That is a £175 saving on the £925 total when the consultation (£325) and the included tests (£600) are charged individually. The package covers consultant review, OCT, wide-pattern autofluorescence imaging and baseline visual field testing, together covering the retinal regions where hydroxychloroquine damage appears.
At annual monitoring visits, we recommend OCT and wide-pattern autofluorescence as the core, with further tests guided by your results. You decide which tests you consent to: each is charged individually, or the full set is available at the same £750 package price.
We would rather you had some monitoring than none because of cost, so a reduced assessment is available. It may not meet the recommended monitoring protocol, and we will explain any resulting limitations and whether additional testing remains necessary.
Specialist electrodiagnostic testing, when needed, is carried out and charged separately by the department we refer you to.
We will never stop or start hydroxychloroquine for you. That decision belongs to you and the doctor treating your condition.
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ABOUT THE AUTHOR
Mr Mfazo Hove
Consultant Ophthalmic Surgeon
MBChB MD FRCOphth CertLRS
Mr Mfazo Hove is a Consultant Ophthalmic Surgeon with experience spanning more than 57,000 procedures. He completed 6.5 years of specialist training at Moorfields Eye Hospital and served for five years as a consultant at the Western Eye Hospital, Imperial College Healthcare NHS Trust. He is the founder of Blue Fin Vision®, a consultant-led private ophthalmology practice operating across London, Essex, and Hertfordshire. His clinical expertise encompasses advanced cataract surgery, refractive lens replacement, laser vision correction, and implantable Collamer lenses (ICL).
A ZEISS Key Opinion Leader, Mr Hove is a respected international speaker with five invited engagements across seven cities in 2026:
- ZEISS China tour (Changsha, Shanghai, and Hangzhou, April – ZEISS APAC User Meeting)
- RCOphth Annual Congress – May – Manchester
- ZEISS EMEA User Meeting (Istanbul)
- ZEISS Lausanne User Meeting (Lausanne)
- European Society of Cataract and Refractive Surgeons Annual Congress (ESCRS, London)
Book a Hydroxychloroquine Assessment
If you are starting hydroxychloroquine or need ongoing eye monitoring, book a consultation with Blue Fin Vision® for consultant-led UK eye care in London, Hertfordshire, or Essex. Discuss your individual retinal risk, the tests you need and a monitoring plan that can be shared with your prescribing specialist.
