Plaquenil Side Effects: Retinal Toxicity and Eye Exams
Last updated: January 2023
I’ve never had any issues with my eyes, so I never needed to see an ophthalmologist (eye doctor) until my lupus diagnosis when I was prescribed Plaquenil (hydroxychloroquine). My rheumatologist told me it was initially used to treat malaria, and soon it became a very common drug to treat lupus. In 1956, the FDA approved Plaquenil for lupus and rheumatoid arthritis symptoms, particularly skin inflammation, hair loss, mouth sores, fatigue, and joint pain.1
Eye side effects of lupus meds
He then began to explain the side effects that I could experience. One of the side effects that scared me, although he said it was rare, was vision-related. Some individuals who have taken Plaquenil experience retinal toxicity. Retinal toxicity is most frequently characterized by symptoms of central visual loss, including reading difficulties, reduced color vision, and central scotomata.2 Because of this I would have to see the eye doctor for continual monitoring and to ensure everything with my vision was fine. The purpose of monitoring is to recognize early toxicity and not prevent toxicity.3
I was told I needed to schedule an appointment as soon as possible so we could establish a baseline for my vision. I had to go to a special ophthalmology center because I needed to do several eye tests that my local eye doctor did not offer. I was nervous about the initial appointment because I didn’t know what to expect. Other than the normal vision test of covering one eye and looking at the screen going line by line, I didn’t know what else to expect.
I was first greeted by a tech who went through my medical history and questioned the purpose of my visit. I explained that I was diagnosed with lupus and started taking Plaquenil. They first did the regular eye exam with me covering one eye and going line by line. I was happy to hear that I was still had 20/20 vision. They also tested the pressure of my eyes.
The next thing they did was optical coherence tomography (OCT) which is a fancy term for taking pictures of your eyes. Optical coherence tomography (OCT) is a non-invasive imaging test. OCT uses light waves to take cross-section pictures of your retina.4 I was placed in front of an OCT machine and the machine scanned each of my eye without touching it. It was a fairly easy process, and within minutes it was over.
The next exam I did was the Humphrey visual field test, a diagnostic test to measure visual fields or perimetry. The Humphrey visual field test measures the entire area of peripheral vision that can be seen while the eye is focused on a central point.5 I was placed in front of the machine with one eye covered again and was given a clicker. I had to focus on the center, and every time I saw the light in the surrounding area, I had to press the clicker. Then I would repeat with the other eye. Overall, this took the most time, but it was a fairly easy process.
After that, I was given drops, and it was time to dilate my eyes. This was the part that I dreaded. I hated when anything had to touch my eyes; it was always weird. A few minutes later, it was finally time to see the ophthalmologist. She looked at my dilated pupils and the test results and told me this was my baseline and everything was ok. She further explained that retinal toxicity was correlated with the dosage of Plaquenil that an individual was prescribed, how long the individual was taking the medication, and weight. So, I probably wouldn’t notice a difference anytime soon. Based on my dosage and weight, she expected I would notice to see a difference once I hit the 10-year mark.
My vision with lupus
It has now been over 5 years, and thankfully I still have 20/20 vision, and there are no signs of retinal toxicity as expected. As the years go by, I have gotten used to taking these tests since I know what to expect. Once the 10-year mark is near, based on the test results, I may have to stop Plaquenil and find an alternative medication. For now, it’s just a waiting game until then. Again it is rare, but precautions are always needed. I see my eye doctor twice a year, and she communicates with my rheumatologist, but at a minimum, those taking Plaquenil should see their eye doctor at least once a year.
How has your experience with the eye doctor been when taking Plaquenil?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?