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How to Protect Eyesight While Taking Hydroxychloroquine

If you have lupus, taking care of your eyes can be especially important. Lupus itself can impact eye health, and the drugs used to treat lupus can also harm your eyes.1

Lupus is often treated with the antimalarial drug hydroxychloroquine (HCQ). HCQ also goes by the brand name Plaquenil®. Antimalarial drugs are some of the safest drugs used to treat lupus. However, in some cases, they can damage the retina, which is the layer of nerve cells that line the back wall inside the eye.1,2

How hydroxychloroquine impacts eye health

Damage to the retina from HCQ is considered uncommon. It impacts about 7.5 percent of its users. HCQ is also safer for the eyes than chloroquine, a similar drug sometimes used to treat lupus. However, severe damage to the retina from HCQ can cause significant vision loss. Currently, we do not know of a treatment to reverse vision loss from HCQ.1,3,4

The risk to your eyes from HCQ depends on certain factors. Eye problems are more likely with high doses of HCQ, which is why it is important for your doctor to get your dosage correct. The risk also increases the longer you take HCQ. Among people who have been taking HCQ for over 20 years, 20 to 50 percent are expected to have eye problems.1,3

Steps you can take to protect your eyes

Catch vision changes early

The best way to protect your eyes while taking HCQ is to catch any vision changes early. Annual eye exams can help detect changes in your eyesight. You can also pay attention to your eyes between screenings. Some warning signs to keep in mind are blurry vision, shimmering lights appearing, colors looking washed out, or trouble reading digital displays.2

Use the Amsler Grid

Another tool you can use is the Amsler Grid. The Amsler Grid is an at-home tool for testing your vision. It detects vision problems caused by changes in the retina. The Amsler Grid does not replace screening by an eye doctor (ophthalmologist), but it can help you keep tabs on your eyes in between screenings.5

Understand eye health

Paying attention to your eye health is important at any age. A 2020 study found that only 65 percent of study participants with lupus followed the recommended eye screenings. These people were all under the age of 21 and took HCQ. The doctors were able to increase the use of recommended eye screenings to 85 percent by studying factors that could prevent compliance.4

The researchers found the best methods to increase compliance were to summarize screening guidance in an easy-to-understand way, increase awareness of screening guidelines, and improve collaboration between ophthalmologists and rheumatologists.4

Get a visual field test

If you take HCQ, your eye screening should include some specific tests. It is recommended that you get a visual field 10-2 test, and at least 1 more sensitive test each year. It may be helpful to ask your rheumatologist for a referral to an ophthalmologist who has additional experience with these types of screenings. These more sensitive tests could be any of the following:2

  1. The FAF (fundus autofluorescence imaging)
  2. The SD-OCT (spectral domain optical coherence)
  3. The multifocal electroretinogram (mfERG)

If a vision test shows signs of damage to the retina, your doctors may recommend you stop taking HCQ. If this happens, you can work with your rheumatologist to find other ways to treat your lupus. Eye damage from HCQ is rare, and by monitoring your eyes you can keep the risk even lower.3

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