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The Expert Series: Lupus and the Eyes
Did you know that hydroxychloroquine, or Plaquinil, is a medication often used to treat lupus, but its side effects can cause sight issues?
Dr. Michelle Petri, founder and director of Johns Hopkins Lupus Center, discusses the importance of maintaining eye health and what to take notice of depending on your subscribed medications.
Read the transcript
The following transcript is automatically generated and may contain typos or misspellings. Please listen to the episode for the most accurate language.
Welcome to the expert series brought to you by the Lupus Foundation of America. Our health education team is here to bring you experts in looping, to discuss topics to help you better. Thank you for tuning in to today's episode. My name is Alyssa and I'll be your host. I am very excited to welcome Dr. Michelle Petri, who will help us understand a little bit more about lupus in the eyes. Michelle Petri is a professor of medicine at Johns Hopkins University School of Medicine. She is also the founder and director of the Hopkins lupus center and principal investigator of the Hopkins lupus cohort, a longitudinal study of disease activity and complications and SLD. Alright, so we'll go ahead and we'll jump into these questions. Dr. Petri, how does lupus affects the eyes and what are some common lupus related eye complications?
Dr. Petri 1:18
Lupus does affect the eyes in many different ways. But it may surprise you that I'm going to actually mention sjogrens, or autoimmune dry eye first. And that's because 10% of people with lupus do develop autoimmune dry eye, but you have to be careful and prove this in an ophthalmology office. Because many medications that people with lupus take can also contribute to dry eyes.
But lupus can directly affect the eye, it can cause a red eye. On the superficial level, we call that episcleritis at a deeper level called scleritis. Or even the back of the eye and that can be called posterior uveitis. And then unfortunately, our medications can also hurt the eye. So people who have lupus kidney disease and are on high doses of prednisone can have a rare but devastating complication called central serous retinopathy, or CSR for short, that can lead to blindness.
Sounds like some really major complications that can happen, unfortunately, some of them with the medications. Are there any indicators for someone with lupus to be mindful of when it comes to their eye health?
Dr. Petri 2:46
Well, absolutely, because we do want people with lupus to keep opthomology appointments. And we have a really strict rule. Everyone who's on hydroxychloroquine needs to see their eye doctor once a year. And this is because after people have been on hydroxychloroquine for an average of about 16 years, one person out of 10 will actually be told they have to stop their hydroxychloroquine because the ophthalmologist has found some deposition in the retina. So we call that hydroxychloroquine retinopathy. The current screening test, it's called O.C.T.--that stands for optical coherence tomogram--is so sensitive, that it picks this up when the person is completely asymptomatic, so that the hydroxychloroquine can be stopped so early that the person will not have any change in their visual acuity, either then or later. I call this no harm, no foul, but the system isn't going to work if the person does not keep those yearly eye doctor appointments. Now at those appointments, the eye doctor can also check for autoimmune dry eye. But if the person has a red eye, they have to see their eye doctor quickly. And so sometimes that has to be done through an emergency room. If the person doesn't already have an ophthalmologist who's on their care team.
And I know that she mentioned hydroxychloroquine as a medication that can affect someone's eyesight. Are there any other ones that that affects a person's eyesight?
Dr. Petri 4:37
I've actually spent my career trying to limit the use of prednisone. And this is because after people have had lupus for about 15 years, the Toronto lupus group prove that 80% of the permanent organ damage is actually directly or indirectly due to prednisone and the eyes are applicable to this prednisone as poison conclusion, because one of the most common things that can happen to people with lupus is cataracts. And cataracts are nearly all due to prednisone in our lupus patients, in fact, they have a particular name. They're called posterior subcapsular cataracts. So if we could limit or eliminate prednisone, we could get rid of this major risk factor for cataracts. Now, prednisone can also contribute to glaucoma risk. And I mentioned at the beginning of our discussion, that central serous retinopathy, that rare devastating complication that can happen to people with lupus kidney disease is actually due to prednisone. And the first rule if someone has CSR is to get rid of the prednisone.
I kind of want to deviate a little bit from our questions here. But can you explain to me and our listeners, what exactly is cataract, like what happens in the eye.
Dr. Petri 6:05
So everyone's eyes we have a lens. And as people get older, the lens can harden, so it can't get the visual picture in focus well anymore. It's like there's a cloud in the way. Now, this happens to all of us as we get older. So when people get to be my age, you know, everybody has cataracts. Eventually they get hard enough, and they're affecting vision enough that the cataracts have to be removed, and then an artificial lens is put in. So this happens to the general population when they're in their elder years. But it can happen to people with lupus much sooner because prednisone causes a particular type of cataracts.
So for our next question here, you know, what are some ways that people with lupus can prevent lupus related eye complications? I know you mentioned, seeing your ophthalmologist yearly. Are there any other steps that they can take?
Dr. Petri 7:12
I think the first step is always to get the correct diagnosis for what has happened to the person's eyes. And once there is the correct diagnosis, to work with the ophthalmologist and probably the rheumatologist on a treatment plan. So we talked a little bit about sjogrens syndrome, autoimmune dry eye. There are actually prescription eyedrops that can help that. What if lupus itself is affecting the eye, we talked about those names: episcleritis if it's on the surface, pleuritis if it's deeper, posterior uveitis if it's the very back of the eye. Once the correct diagnosis is made, the ophthalmologist will have a plan. Quite often for that superficial kind of eye involvement, it will be a prednisone eyedrops. The eye doctor will have a plan, but plans need to be updated, changed, sometimes fine-tuned over time. So ophthalmology follow up is important. And if medicines that aren't topical eyedrops are needed, I think that should be in a partnership with the rheumatologist so that there is really a care team, working with the person with lupus to make sure not only that the therapies are working but to make decisions when they can be gradually withdrawn or when there are additional toxicities that have to be taken into account. So correct diagnosis, the correct treatment and appropriate follow up, I think are the key to treating any lupus-related eye complication.
And I kind of went into my next question about you know what treatments are available for lupus related eye complications. And I know that you mentioned those eyedrops as well. And would there be anything else that would help?
Dr. Petri 9:14
So yes, for some of the lupus-related things we talked about now, episcleritis usually is only going to require prednisone eyedrops, scleritis, or uveitis is often going to require immunosuppressive medications, because we don't want to try to manage it with prednisone alone. Remember, I hate prednisone. My patients hate prednisone. So we will rope in some immunosuppressive drugs that are much less likely to have complications associated with them. And there are many of them. Things like azathioprine, mycophenolate, and that's what it's really important to have the rheumatologist on board as well, because that's what we do in rheumatology. We manage these immunosuppressive medications. We know how to use them appropriately, and how to monitor that their use is safe in that individual person who has lupus. So for example, mycophenolate a great immunosuppressive drug, but it can never be used in pregnancy because it causes birth defects. Those are the kinds of individualization of treatment that are so important, because so many of people with lupus are younger women who may want and plan a pregnancy.
That is really good to know. Thank you for that. Let's see her on my last question here says, what are some odd conditions people with people may associate with lupus, but they are not lupus related? I know that earlier. We talked about cataracts. And I believe he did mention glaucoma. And what about macular degeneration?
Dr. Petri 10:57
Macular Degeneration has become a big issue for us who treat people with lupus. And this is because our patients who have lupus are getting older. By the way, I'm so glad this is happening. When I started at Hopkins, 36 years ago, I really didn't have any patients over 45. And now thankfully, I got lots of patients who are in their 70s, you know, the patients and I have aged together. But as we get older, other conditions can happen that aren't related to lupus, but they're going to have an impact. And one of them is macular degeneration. There are several kinds of macular degeneration. These are vision threatening conditions of the eye, they are treatable. But the impact they have on the lupus care is that our usual test to monitor whether hydroxychloroquine can be safely given the OCT test is no longer interpretable when patients have major macular degeneration, so the eye specialist may say I can no longer promise that hydroxychloroquine is safe. And quite frequently eye specialists will tell me that they would actually prefer if my patients stopped taking hydroxychloroquine because they can no longer appropriately monitor. This is a really tough decision. The reason it's a tough decision is that if hydroxychloroquine is stopped for macular degeneration reasons, the person's risk of mortality does go up. This is because hydroxychloroquine is the only medicine we currently have that's been proven in multiple studies, including one of mine, to improve survival. But vision is precious too. So when you can't monitor for hydroxychloroquine safety anymore. I want the patient to be the person who makes the decision. So I present the pros and the cons. And I asked the patient, what do they want? What is their priority? Because I think it's wrong to think that physicians make decisions. I tell my patients, they're the quarterback of their team. I'm their coach. You know, ultimately, it's the quarterback who decides whether to throw the ball. So it always is a team approach. And I think it is necessary to spend time discussing these very tough decisions. And I will even say to one of my patients, you don't have to make the decision right when we're looking at each other. You can email me later. And maybe you have additional questions. So I do think macular degeneration is going to have more and more of an impact on hydroxychloroquine use as our patients age.
it's really nice that you you know you have that you kind of have that discussion with your patients that you know you are the quarterback and of course, like you know, you have to make that tough decision. But it's good that you're laying out the possibilities about continuing hydroxychloroquine and discontinuing it because of the macular degeneration. And actually, that was our last question. Is there anything else that you want lupus patients to know about the eye?
Dr. Petri 14:36
Well, I'm so impressed you chose the eye as a topic for one of these Experts Series. Because I think we concentrate so much on skin, joints and kidneys in our patients with lupus that we sometimes forget that the eyes and vision are really important. You're right about that.
Thank you so much, Dr. Petri for your Time today and talking to us about lupus in the eyes. For those listening in, you can find more information on lupus on the National Resource Center on Lupus by visiting lupus.org/resources. You can find dedicated resources to this topic in our show notes. For the latest information on lupus and COVID-19, please visit lupus.org/coronavirus. To listen to additional episodes of the expert series, you can visit lupus.org/theexpertseries where you can find where you can also subscribe to get alerts when podcasts are released. If you would like to speak with one of our health education specialists, you can go to lupus.org/healtheducator or call 1-800-558-0121. And finally, to connect with others with lupus from all over the world, I will say invites you to check out our online support community is connected, where you can talk with others find emotional support, and discuss practical insights for coping with the daily challenges of lupus. You can find the community at lupus.org/resources/lupusconnect
The Expert Series is an educational podcast series featuring leading lupus experts with a focus on helping you live well with lupus.
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