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Rheumatology · Retinal Toxicity

What Are the Eye Side Effects of Hydroxychloroquine?

At a Glance

While long-term use of hydroxychloroquine (Plaquenil) can cause retinal toxicity, severe vision loss is extremely rare. Protect your eyes by ensuring your dose is strictly weight-based (under 5 mg/kg) and getting specialized SD-OCT eye screenings starting in your fifth year of treatment.

Will taking hydroxychloroquine (Plaquenil) make you go blind? The short answer is no, this is extremely unlikely. While it is true that hydroxychloroquine can affect the retina (the light-sensitive tissue at the back of the eye) over time, severe vision loss is rare. By taking the correct weight-based dose and adhering to a specific screening schedule, any changes can be detected safely long before they affect your vision.

Why Hydroxychloroquine is Foundational for Lupus

Before worrying about side effects, it is helpful to understand why your rheumatologist prescribed this medication. Hydroxychloroquine is considered a “foundational” therapy for systemic lupus erythematosus (SLE) [1][2]. It is life-saving and works quietly in the background to prevent lupus flares [3][4], protect your organs from damage, and even reduce the risk of mortality [5][6]. Because of these substantial benefits, doctors strongly recommend it for almost everyone with lupus.

The Truth About Retinal Toxicity

The eye-related side effect most associated with hydroxychloroquine is called retinal toxicity. This happens when the medication slowly builds up and damages the outer layers of the retina, particularly the light-detecting cells in the center of the eye [7][8].

However, the most important thing to know is that this side effect is cumulative, meaning it heavily depends on how much of the medication you take over many years [9]. The risk of retinal toxicity is very low during the first 5 to 10 years of taking the drug.

How to Protect Your Eyes

There are two critical steps to ensuring your eyes remain healthy while taking hydroxychloroquine:

  • Proper Dosing: The American Academy of Ophthalmology (AAO) recommends a daily dose of 5 milligrams (or less) per kilogram of your actual body weight [10][11]. For example, if you weigh 150 lbs (about 68 kg), your maximum daily dose would be about 340 mg. Because pills usually come in 200 mg sizes, your doctor might have you alternate between taking one pill and two pills on different days. Note that doctors also typically cap the total daily dose at 400 mg per day, regardless of your weight.
  • Specialized Screenings on the Right Timeline: A standard eye exam for glasses is not enough. You need advanced screening that includes spectral-domain optical coherence tomography (SD-OCT) (a highly detailed structural scan of the retina) and visual field (VF) testing (which checks for blind spots) [12][13].

The AAO Screening Timeline:
You do not need these advanced tests every single year from day one unless you have major risk factors. The official guideline is to get a baseline exam within your first year of starting the drug. After that, your annual screenings begin at year 5 [13][10].

The Importance of Catching It Early

These advanced tests are designed to catch microscopic, structural changes in your retina before you experience any noticeable changes to your vision [14][7]. If your eye doctor notices these early signs of toxicity, they will coordinate with your rheumatologist to stop the medication.

Because the drug stays in the body for a long time, damage can progress slightly even after stopping [15]. However, because the SD-OCT tests catch the damage at a microscopic level, stopping the medication immediately ensures that the progression halts long before it ever affects your actual ability to see.

Additional Risk Factors

Certain factors can increase your risk of developing retinal toxicity, requiring you to start annual screening before year 5:

  • Kidney disease: Since hydroxychloroquine is cleared by the kidneys, poor kidney function can lead to higher levels of the drug in your body [16][11].
  • Tamoxifen use: Taking this breast cancer medication alongside hydroxychloroquine significantly increases the risk of toxicity, requiring closer monitoring [13].
  • Ancestry: Patients of Asian descent may experience retinal changes in a slightly different part of the eye, meaning the eye doctor needs to scan a wider area of the retina to ensure accurate screening [17][18].

Common questions in this guide

Will taking hydroxychloroquine (Plaquenil) make me go blind?
Severe vision loss or blindness from hydroxychloroquine is extremely rare. By following proper weight-based dosing and getting advanced annual eye screenings starting in your fifth year, any microscopic damage can be caught and stopped long before it affects your vision.
How much hydroxychloroquine is safe for my eyes?
The American Academy of Ophthalmology recommends a maximum daily dose of 5 milligrams or less per kilogram of your actual body weight. Doctors also typically cap the total daily dose at 400 mg per day, regardless of weight, to minimize the risk of eye damage.
What kind of eye exam do I need while taking Plaquenil?
A standard eye exam for glasses is not enough. You need advanced screenings that include spectral-domain optical coherence tomography (SD-OCT) to scan the retina's physical structure, along with visual field testing to check for early blind spots.
When should I start getting annual eye exams for hydroxychloroquine?
The official guideline is to get a baseline eye exam within your first year of starting the medication. Unless you have specific risk factors like kidney disease, your routine annual eye screenings should begin after five years of taking the drug.
Do other medical conditions or medications increase my risk for retinal toxicity?
Yes, certain factors can increase your risk and require closer monitoring. Having kidney disease can lead to higher levels of the drug in your body, and taking the breast cancer medication tamoxifen alongside hydroxychloroquine significantly increases the risk of toxicity.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Am I currently taking a dose of hydroxychloroquine that is under 5 mg per kilogram of my actual body weight, based on my most recent weigh-in?
  2. 2.Given my medical history (such as kidney function or other medications), do I follow the standard screening timeline of a baseline exam then starting annuals at year five, or do I need them sooner?
  3. 3.Can you refer me to an ophthalmologist who is familiar with the latest American Academy of Ophthalmology guidelines and has the equipment to perform both SD-OCT and visual field testing?
  4. 4.If I lose or gain weight, how much of a change should prompt us to re-calculate my daily dose?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (18)
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This page provides educational information about hydroxychloroquine and eye health. Always consult your rheumatologist and ophthalmologist for personalized medical advice, dosing, and screening schedules.

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