Lupus and Eye Care

January 23, 2023

Watch the replay of our most recent Live Expert Q&A: “Lupus and Eye Care” with board-certified ophthalmologist, Dr. David Lazar of Lazar Retina! 👁 

Did you know that a prominent treatment for lupus called Hydroxychloroquine (Plaquenil) can cause ocular toxicity to various parts of the eye such as the cornea, ciliary body, and retina? “Plaquenil Toxicity” affecting the eyes of lupus patients can progress EVEN after you’ve stopped the medication, which is why it’s important to catch any toxicity early on through an experienced ophthalmologist, at the earliest signs of disease.

In this Live Q&A session, Dr. Lazar answers the lupus community’s questions about lupus and eye care, ocular toxicity from medication, and the precise testing you need to detect early disease.

David Lazar, MD, is a board-certified ophthalmologist with subspecialty training in medical and surgical diseases of the retina. He serves the Southern California community for conditions that affect eye health and threaten vision with his state-of-the-art facility in West Los Angeles. As a vitreoretinal specialist, Dr. Lazar is well-known for his surgical skill and expertise in diagnosing and treating issues that affect the retina and the vitreous body. He completed fellowship training in vitreoretinal diseases and surgery at the Lahey Hospital and Beth Israel Deaconess Hospital in Boston, Massachusetts. While there, he also served as Clinical Associate at Tufts University School of Medicine and Harvard Medical School.

Live Q&A Transcript: 

My name is Dr. David Lazar. I’m a retina specialist in West LA, California. I’m an ophthalmologist with subspecialty training in medical and surgical disease of the retina, and part of my practice is doing Plaquenil screening for patients who have been on Plaquenil for various reasons – lupus being one of them. And so Lupus LA was nice enough to have me onto today. This is actually my third time participating in this event, so I’m very happy to be back. I’m going to be answering some questions that were emailed over from the community, so jumping right into it!

Question #1: “My Rheumatologist won’t approve a visit to an ophthalmologist until my fifth year on Plaquenil is that normal?”

Okay, so what this question is really getting at is, what is special about being on Plaquenil for five years? Well, we know that there are two main risk factors for getting retina damage from Plaquenil. The first risk factor is the amount of the dosage that you’re on. So, are you on the appropriate dose, or maybe the dose is too high or too low. Then second risk factor is length of time on the medication. And that’s not in weeks or months, that’s in years. And what we know is that it takes a very long time, generally speaking, without other kind of medical conditions, it takes a long time to develop. Retinal damage from Plaquenil actually takes five years, usually. So what this Rheumatologist is in a way is saying is you don’t need an eye exam unless you’ve been on the medicine for five years. I understand the philosophy behind that because we have the data that shows that the risk of toxicity is exceptionally low prior to year five on the medication. But I’m going to make a little caveat to that comment, and say that that’s not really accurate, because what’s actually recommended is that you get a retinal exam, a screening exam, right when you start the medication. And the point of that is just as a baseline so that you have retinal imaging to compare for all your subsequent exams. So really the standard of care is you get a retina exam with the appropriate imaging when you start the medication, start Plaquenil, and then either yearly or you can jump and just start again at year five. What I recommend to my patients and what I would do if I was on Plaquenil is I would just get a baseline exam with the appropriate imaging when I started the medication and then yearly thereafter. And just to make it simple, but that’s where that Rheumatologist is coming from with that question, which is pretty good.

Question #2: “How does Plaquenil affect your eyes? Can you please explain what is happening when vision changes occurs?”

Okay, so that’s also a good question. So Plaquenil affects the retina, and what I tell my patients is that if you think of your eye like a camera. There’s a lens in a camera and there’s film in a camera, and the retina is the film. Okay, so it’s not cataract surgery or lasic surgery. That’s all the front part of the eye, the retina is in the back part of the eye. It’s like film and a camera, and specifically Plaquenil damages the pigmented layer of the retina that its purpose is to nourish the entire part – all other parts of the retina, it’s where it gets all its nourishment from. So when you have damage, there, all the retina that surrounded that area of damage doesn’t work. So that’s a long way of saying it damages the retina, which is the back part of the eye.

Question #3: “Are Plaquenil side effects, reversible?”

The answer is no. And that’s why we take it so seriously. It’s not that when you look at the risk of Plaquenil toxicity, retinal damage, it’s actually quite low. But because there’s no treatment for it, and by definition, it’s permanent, we take it exceptionally seriously in the ophthalmology community. So the answer is no. The way to think about taking Plaquenil is that the best approach is not to think about it like, “oh, well, if I get it, there’ll be some treatment.” The best way to think about it is you just have to take the medicine safely, get examined, and prevent any sign of damage or catch any sign of damage very early before it’s noticed, clinically. So this is, I guess, a good segue to mention that with our new imaging techniques that I use in my office daily, we can catch – as clinicians – we can catch evidence of early Plaquenil toxicity before it manifests clinically. And that’s the goal, right? The goal is to catch any sign of toxicity early, before the patient even notices it. That way we can stop the medication and put the patient on a different medication, and the patient will never even notice clinically that there’s any damage. Because, again, if it gets to that point where they notice, unfortunately, it’s irreversible. All right,

Question #4: “When I have a flare, I notice that my eye strain. Is that some sort of inflammation?”

That’s a good question. It’s really hard to speculate. I would say that I guess the way I’m going to approach that question is if you feel like you’re having a lupus flare and it’s affecting your eyes, the best thing to do is just get a thorough eye exam and see specifically what is going on. Because depending on what part of the eye is affected, the treatment would be different. And, and I would just say the the best medicine to get an exam when and if you feel like you’re having a flare. Should I be worried about

Question #5: “Should I be worried about continued Plaquenil use for over ten years? I’m getting conflicting answers on this and would love an ophthalmologist opinion.”

So what I tell all my patients, every single one that I’m starting to follow for Plaquenil is that Plaquenil is an exceptionally safe medication. It’s been on the market for decades. I would take it if I ever needed to take it, without hesitation. If a family member of mine needed to take it, I would let them take it without hesitation. And these aren’t statements that I would say about every medicine that’s available. So it is an exceptionally safe drug. The only caveat is that it requires appropriate screening, yearly appropriate screening, in order to catch any sign of toxicity early. That’s really it. So even when you look at the odds of getting Plaquenil toxicity at ten years, it’s exceptionally low. So if you and your Rheumatologist feel that the Plaquenil is a good drug for you, that it’s working for whatever disease process you have, I would absolutely continue the medicine even if it was 20 years or 30 years or 40 years. Just make sure that you’re getting appropriate examinations yearly, and you’ll be fine.

Question #6: “How often should someone on Plaquenil will get their eyes checked?”

So I briefly touched on that in the beginning. The whole nuance between year one and year five. I just try to make it as easy as possible for my patients, and I just recommend yearly exams as long as you’re on the medication. So you should have a baseline exam right when you start the medication. Just again. And the purpose of that exam is not that I would expect any toxicity, but the purpose is to have a baseline imaging to compare all subsequent visits and then yearly thereafter.

Question 7: “If you have eye pain with lupus flares, at what point should you get your eye checked by an ophthalmologist for a full eye exam? Hard to tell if pain is from lupus flare or from eye problems separately?”

That’s a good question, and I’m really going to answer it very similarly that I did to the other question, which is if you have lupus and you have eye symptoms, you should go get an eye exam immediately. We’re going to touch on this on a separate question, but lupus can affect basically any structure of the eye from the front to the back. Most commonly, what I see as a retina specialist is that it can cause inflammation of the blood vessels in the retina. So when you have inflammation of the blood vessels, it can impair blood flow, and then you get retinal damage, but it can really affect any structure from the front to the back, and that is treated differently. So if you have a red eye or a loss of vision or really any Ocular symptom and have the diagnosis of lupus, I would recommend don’t wait, don’t hope that it’ll pass. Go get seen by your eye care professional and make sure that things are okay. Because again, depending on what part of the eye is affected, you’ll be treated differently.

Question #8: “Can lupus affect your vision?”

That’s very similar to what I just said. Yes, it can. Anywhere. Lupus can cause inflammation anywhere from the front to the back of the eye. Again, most commonly what I see is retinal vasculitis, which is inflammation of the blood vessels on the retina from the lupus, but it can affect any part of the eye.

Question #9: “What is the best way to avoid side effects from Plaquenil? Or how can I be proactive to check for changes?”

Okay, so this is a very important question that I kind of touched on, but I’m going to reiterate because it’s really such a good question:

As a patient who’s on Plaquenil, if everything’s going according to plan, you should never notice visual changes from Plaquenil. That is the entire point of getting thorough annual eye exams, Plaquenil checks. The entire point is so that you never notice visual changes, because, as I mentioned, God forbid you do notice the changes. It’s irreversible. They’re with you for life. So the whole point of going to get a yearly screen is that the doctor can catch any early signs of toxicity on these very detailed scans so that you can stop the medicine and never notice any changes visually. So there are no I wouldn’t recommend doing any kind of at home proactive checks or anything like that. I would just say take your medicine, take the Plaquenil, especially if it’s between you and your rheumatologist, you feel like it’s appropriate, and then go get seen, get your eye exam. Get your yearly eye exam and make sure that the appropriate tests are done. And that way, any early signs of changes can be caught before you notice them clinically.

So that’s that’s pretty much about all those questions that were submitted. I want to thank Lupus LA for having me today, and I’d be happy to see anyone in my West LA Office. My office is right on Wilshire Boulevard, just west of the 405, and I’d be happy to see you.

So thank you very much, and thank you, Lupus LA!

Want to learn more? Watch Dr. David Lazar’s full presentation from our Patient Conference at UCLA called, “Retinol Toxicity Associated With Plaquenil Use