Hydroxychloroquine (Plaquenil; HCQ) has been an important and effective drug for the treatment of lupus erythematosus and related autoimmune and inflammatory diseases for half a century, although its potential to cause retinal damage continues to raise concern among rheumatologists and ophthalmologists. Further, despite the overall safety profile of HCQ, some patients with preexisting vision problems (e.g., glaucoma, cataracts) may be reluctant to take a medication with any potential for ocular toxicity, thus depriving them of a valuable therapy.
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May 2011It is important to know the facts. Retinal complications from HCQ are actually rare (at proper dosage) and, with good screening, the risk for visual loss is very low. Nevertheless, retinopathy begins to appear with long-term use, and retinopathy is serious insofar as there is no known treatment. It can progress for a year or more after stopping the drug and, if not recognized early (at the point of screening), it can lead to functional blindness. The classic clinical picture of HCQ toxicity is a “bull’s eye” maculopathy (see Figure 1)—but as I’ll later note, this is a late finding.
Data on retinal complications associated with HCQ and recommendations for screening for HCQ toxicity from the American Academy of Ophthalmology (AAO) have been published recently, and they have important clinical and legal implications for the rheumatologist.1,2 This article is intended to highlight new knowledge about how this toxic effect develops and can be recognized.
Incidence
The best data on HCQ toxicity are from the National Data Bank for Rheumatic Diseases.1 They suggest that, in an unselected population, the risk is below 1% for toxicity within the first five to seven years of treatment as long as dosage is within general guidelines. However, frequency of toxicity rises thereafter, probably reaching several percentage points by 15 to 20 years of use, although there were not enough cases in the data bank to give a firm number. From anecdotal data and the large number of overdose cases among published reports of toxicity, the risk is clearly accelerated and higher with overdose. Further, the recognition of toxicity may rise with the use of more sensitive diagnostic tools for screening. I have seen a dozen cases of toxicity in the past year, which is rather high for a suburban area, even when considering referral patterns.
Daily Dose
The new AAO recommendations focus more on the duration of treatment rather than a daily dose but emphasize that overdosage is dangerous.2 Most patients receive two tablets (400 mg) per day, which is fine for women taller than 5 ft. 7 in. or men taller than 5 ft. 5 in. Why is height important? Because the drug does not distribute in fatty tissues, so an “ideal” weight is a critical parameter for dose calculation. Many of the overdose cases I have seen have received dosage by weight, and these patients were overweight. The ideal weight formula is show in Table 1.
THANK YOU VERY MUCH FOR THE INFORMATION.
IT WAS VERY EASY TO UNDERSTAND AND ANSWERED MANY OF MY QUESTIONS.
I JUST FOUND OUT, I HAVE RETINA DAMAGE TO MY EYES AND EVERYONE IS GIVING ME VERY SOFT ANSWERS.
THE DR. TREATING MY LUPUS NEVER TOLD ME ABOUT SEEING A EYE DR. OR WHAT SPECIALTY TEST TO REQUEST. THIS , I CAN RELATE TO MY FREINDS ALSO TAKING THE DRUG. THANKS FOR THE iNFO. EVERYTHING HAPPENS ACCORDING TO GODS PLAN,
Two comments: One, Plaquenil toxicity is not as rare as these doctors state. I think as time goes on, and more and more people are affected, the drug companies are going to have to admit it’s a bigger problem than they thought. Secondly, if “god’s plan” is to make you blind, that’s one son-of-a-bitch of a god.
I’ve taken Plaquinel only 4 days and the blood vessels in one of my eyes is leaking. I felt little squirts in my eye when I was lying on that side of my body during the night. I woke and looked in the mirror and saw the blood in my eye above the iris. I’ve never had this problem or any eye problem before.
Excellent advice. I too have lupus and hydroxychloroquine has caused me great harm to both my eye. I now have to face surgery for glacouma. This is very disheartening. My opthamologist ordered restasis for my eye and that helped, but was not enough. So thanks for your help.
I too was on hydroxychloroquine and I too have damaged eyes due to this medication. Although I stopped taking this 2 years ago due to damage my eyes are still deteriating.
I also was diagnosed with retinopathy from the hydrochloroquine. Even after stopping the meds you still had progression? Did you completely lose your vision?
I quit taking Plaquniel 10 yrs ago when my optomologist said I had bulleyes retinopathy in both eyes ! I had always had my eyes checked every 6 months, I had switched Drs and this one diagnosed me. Now see Retina Dr every 6 months.
This sucks and so does Lupus !
I took plaquenil for 20 years. Last year I told my eye doc I was seeing flashing lights and everything seemed dark. He told me it was just the aging process. 9 months later when I complained again he sent me to a retinol specialist who told me I had severe toxicity. I’ve been off plaquenil for 4 months and there are no changes. As it is now I only have 30% vision in both eyes. I’m only 60 but I’ve lost all my independence since I can no longer drive. I walk around the house with a miners light on my head just to see in the daylight. When I think back I was relying on my eye doctor to do the right tests and he didn’t. Plaquenil is the DEVIL!