Living with AMD: What You Need to Know

BrightFocus Foundation
Living With AMD: What You Need to Know
February 27, 2019
1:00–2:00 pm EDT

Transcript of Teleconference with Dr. Gayatri Reilly, a retina specialist at Retina Group of Washington, DC.

The information provided in this transcription is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should be taken only under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.

Please note: This Chat has been edited for clarity and brevity. AMD refers to age-related macular degeneration.

MICHAEL BUCKLEY: Hello, I’m Michael Buckley with the BrightFocus Foundation. Welcome—or welcome back—to the BrightFocus Chat. Today’s topic is “Living with AMD: What You Need to Know.”

Just a quick note about us. BrightFocus funds research and public education to better treat and someday cure macular degeneration, glaucoma, and Alzheimer’s disease. We have a number of free materials that help families that are impacted by these diseases. These include brochures; articles on our website, www.BrightFocus.org; and, of course, the BrightFocus Chats.

Today we’re really fortunate to hear from a well-known ophthalmologist and have a chance to ask questions on a wide range of topics concerning macular degeneration. February is AMD Awareness Month, so this seemed like a great opportunity to have an open-ended conversation with a well-known ophthalmologist.

So, without further ado, I’d like to introduce Dr. Gayatri Reilly of the Retina Group of Washington, DC. Dr. Reilly, thank you for joining us today.

DR. GAYATRI REILLY: Thanks for having me, Mike.

MICHAEL BUCKLEY: To get started, just sort of a brief background about yourself—I know you’ve been an ophthalmologist for a number of years. Is there a common recurring question you get asked by your patients?

DR. GAYATRI REILLY: The main thing is that I really enjoy what I do, and as a retina specialist, a big bulk of my patients are patients with macular degeneration. A lot of the time these patients are in my chair, and they’re just being told for the first time that they either have dry macular degeneration or wet macular degeneration. We’ll certainly talk more about the differences in a little bit, but the biggest question that patients tend to have as a recurring theme is, “Am I going to go blind?” because they’ve known—their parents or somebody else that they’re familiar with has gone blind because of macular degeneration. It’s generally the first and most honest question that I get in the most frequency. To these patients—I think that’s the part that I find so exciting now, in 2019, that I can actually say that we have treatments that can truly prevent vision loss, and my expectation for most patients is that they will not go blind, and that really goes a very long way for reassuring them. Then, we can talk about a lot more of the logistics and more of the details once their biggest fear, really, has been approached and discussed.

MICHAEL BUCKLEY: That’s great. I think you’re right, that’s an obvious first question for people. We have a number of questions from our listeners that were submitted in advance about different types of supplements and medicines, particularly about AREDS. I was wondering if you could give our audience a quick overview of what AREDS is.

DR. GAYATRI REILLY: Sure. AREDS stands for the Age-Related Eye Disease Study, which was completed in 2001—so, 18 years ago—which was an NIH clinical study that looked at different nutritional supplements and high doses of antioxidants to see if they could slow down the disease in patients who had intermediate AMD and those with advanced AMD.

The initial AREDS formula, which came from that trial, had dosages of vitamin A, or beta carotene; vitamins C and E; zinc; and copper. That was the original AREDS formula of the vitamin that you can get over the counter. That was then sort of reinvestigated in 2013 with the AREDS 2 trial, which wanted to look at new antioxidants, lutein and zeaxanthin—which are two primary antioxidants that have been investigated to be of additional help—and it also looked at things that we hear for other conditions, like cardiovascular health, like omega 3 fatty acids.

The AREDS 2 formula was published in 2013, and it made some changes to that original formula. It actually removed the vitamin A and added those two antioxidants—lutein and zeaxanthin—to the formula, and it was done for a couple of reasons. One thing with the original formula, which many patients found very confusing, and understandably so, was that when you saw the original formula, it would say “This is a formula for smokers” or “This is a formula for non-smokers.” Patients had many questions that arose from that, and it was basically because it was found that a high dose of vitamin A actually had a higher risk of lung cancer. So, they had a separate formula for patients who were smokers, who already have a higher risk of lung cancer.

The nice thing about the AREDS 2 formula is, by being able to eliminate the vitamin A completely from the formula and adding the lutein and zeaxanthin in its place, we no longer have to have these two different formulas, and it just made things a lot less confusing for the patient.

MICHAEL BUCKLEY: Great. I appreciate the point about smoking, because we had a caller ask that question in advance. I was wondering, is the original AREDS formula in use now?

DR. GAYATRI REILLY: It’s getting harder to find. And initially, for most patients, it’s not that the original formula was inferior or anything like that; it’s really getting harder to find now just because I think a lot of it just has to do with simplicity, and like I said, it became a lot less confusing when AREDS2 was released. So, I think you can still probably find some AREDS formula vitamins out there, but a majority of the formulations from the main companies that produce these vitamins have gone over to the AREDS 2 formula.

MICHAEL BUCKLEY: Is this over the counter? If I were at a pharmacy or a supermarket, would I find AREDS 2?

DR. GAYATRI REILLY: It is, and that’s where it gets a little confusing, because if you’ve been in the grocery aisle there, there’s so many different vitamins that will say “for your eye health,” and this is healthy for other eye conditions and many patients think that is the same thing. So, these vitamins do not need a prescription, they are available over the counter, but the biggest thing you have to look for—and I kind of circle it for my patients—is that it must say “AREDS 2 formula” on it. If it says it has that formula, then you know you’re getting the proper dosages of the vitamins and antioxidants that have been proven.

MICHAEL BUCKLEY: Great. You mentioned the vitamin supplement aisle. I think for a lot of people, that is a very overwhelming and expensive part of the store. How would someone know if there are other supplements that they should be taking, or are there supplements that could work against the AREDS 2? How does somebody navigate what can be pretty overwhelming?

DR. GAYATRI REILLY: I think the best thing to do is to review your list of vitamins, over-the-counter medications, and your regular medications with your physician. Either your physician or your ophthalmologist should really be your advocate, and they should be able to go through everything that you’re taking and making sure that you are on the proper vitamin or formulation, and this is going to be helpful for you, or this is not something you need, etc. But I think having a complete list for your physician and your ophthalmologist is extremely important.

MICHAEL BUCKLEY: While we’re on the topic of over-the-counter medicines, if someone is taking pain medicine or cold medicine or an allergy medicine, are there concerns that they should have if they also have macular degeneration? 

DR. GAYATRI REILLY: Not specific to macular degeneration, but I’m sure we’re all familiar with almost all of these medications and their ocular side effects. Most typically, they’re not specific to AMD, but they can have side effects if you have glaucoma or if you have dry eyes. Most of these over-the-counter medications have ingredients that can cause something—angle-closure glaucoma, which can be a very serious eye condition—and so that’s why they have these adverse effects listed, but over-the-counter medications and AMD, thankfully, are fairly safe together.

MICHAEL BUCKLEY: That’s good to know. In terms of medicines, the number one question that we get at the BrightFocus Chats is about the injections in the eye, and I was wondering if you could tell people a little bit about what they are, and particularly, is there any hope for people receiving fewer of these injections in the future or any types of alternatives to the injection?

DR. GAYATRI REILLY: Yeah, absolutely. First, the injections—and you’re going to have to take my word for it—but the injections are not as bad as your imagination of an injection into your eye. I tell my patients we’ve all had our blood drawn for our cholesterol and diabetes, and that needle stick is usually worse than an injection in the eye. So, that’s the first bit of reassurance, and that usually goes a long way; and afterward, they usually concur that the injection wasn’t too bad. If you’re having any side effects from the injections, they tend to be related to dry eyes. There are a lot of things that we can do to make your side effects much, much better. So, it is really important to communicate that with your retina specialist who’s doing these injections.

The other thing about the future of AMD treatment is that part is really exciting. We’re actually doing a clinical trial here at the Retina Group of Washington, and this a world-wide clinical trial, which is looking at a Phase III clinical trial—looking at a slow-release of a medication. It’s a surgical implant that actually very slowly releases the drug over the course of a year or so that you’re hopefully not getting additional injections during that time. So, it’s a really exciting study that we’re doing right now, and the early Phase I and Phase II components of the trial have left us fairly excited that there are going to be other options in the near future. This trial should wrap up in a couple of years, and that can provide alternatives to injections.

MICHAEL BUCKLEY: That’s really exciting news from the research front. I’d like you to stay on clinical trials for another moment. We have a number of people that contact BrightFocus or leave messages on the Chat wanting to learn more about clinical trials. I think it’s interesting that the phrase is sort of a household phrase. Everybody hears about clinical trials, but I think a lot of people don’t know too much about them or might be a little anxious. What do you suggest people do if they want to learn more about clinical trials?

DR. GAYATRI REILLY: First, usually there’s a team of research physicians in the process that are running the clinical trials. It really helps to have family involved in the initial discussion about any clinical trial so that everybody sort of hears the same thing. Be prepared with a list of questions. Me, just creating my own clinical trial—it’s not going to be the same as something that has been vetted and has already had the safety and efficacy and all of the possible risks figured out prior to a trial starting.

So, having a good list of questions: What is the treatment? What are my expectations? How often will I be evaluated? What are the chances? Is it possible that I’m not going to get any medication? Is there a placebo arm where I could potentially be losing vision and not getting any treatment at all? What are the possible risks? Side effects? How do I know if the medication is working? What is being done for my safety?

So, I think preparing a good list of questions really helps keep you organized and can help you really go through the potential risks and side of effects of any investigational medicine.

MICHAEL BUCKLEY: Those are all great points. What prompted you to want to help lead a trial site for a clinical trial?

DR. GAYATRI REILLY: I think it’s just being able to offer something that we can’t offer right now. I think it’s so exciting to be able to investigate something that has the potential to be better—you know, whether it’s a better drug, or it might last longer, or it might be a completely different way to treat the eye than we’ve already been doing. I find that extremely exciting. We spend a lot of time going through numerous clinical trials that are brought to us to make sure that anything that we offer is going to be safe and good for the patients, as well.

MICHAEL BUCKLEY: Great. We have a few questions that have come in about family history and the progression of the disease. Dr. Reilly, a couple of people have asked, “If you have AMD, is there any way that it could be slowed down or reversed at all?”

DR. GAYATRI REILLY: That’s where the AREDS vitamins come into play. That initial clinical trial…and it was reaffirmed in the 2013 data. If you have intermediate AMD, it decreases your risk of progression to wet AMD by 25 percent, so it might just sound like you’re just having vitamins and antioxidants, and “What is it actually doing for me?” But that’s exactly what it is designed to do, and that is the reason why we recommend it. It can slow down the process and decrease your risk for developing wet AMD by 25 percent.

MICHAEL BUCKLEY: We have a question about the term “legally blind.” When you talked about the eyesight that someone may lose during AMD, what is legally blind? What exactly does that mean, and is that something that could happen as AMD progresses?

DR. GAYATRI REILLY: It’s a great question. Thankfully, most of the patients that I treat now with both dry and wet AMD would not be considered legally blind, but by definition, legally blind implies that your visual acuity when you’re being tested on the eye chart is 20/200 or worse in your better seeing eye. So, the best eye that you have is actually barely seeing the big “E” on the eye chart. There’s a lot of reasons why you can be legally blind; it also has a component of your visual field, which things like glaucoma can affect as well. But that is the natural history of AMD, which means that if we do absolutely nothing for macular degeneration, then those eyes do have a high risk of heading that way. Thankfully, with the advent that we can talk more about some at-home monitoring devices and patients being educated and knowing what to look out for and just having treatment for the condition, the number of patients who would be considered legally blind has significantly decreased.

MICHAEL BUCKLEY: That’s great. Several callers have wondered, is AMD genetic? Is it something that could be inherited if there is a family history of low vision disease?

DR. GAYATRI REILLY: Absolutely. While the genetics of AMD are really complex, we’ve learned so much about that over the past 5–10 years or so. One thing we know for sure is that AMD is highly genetic. So, a lot of times you may not know why somebody lost vision, but it is important to ask whether they were ever told that they had macular degeneration or not. But it is something that’s hereditary.

MICHAEL BUCKLEY: A few callers have asked about the injections—whether that’s for wet AMD or dry AMD. I was wondering if you could give a brief distinction between wet and dry AMD and mention whether the injections are for one or both types of conditions.

DR. GAYATRI REILLY: I like to think of AMD as a continuum. Dry AMD has its own stages; it has four different stages. Just starting off, you may have no trouble with your vision—it’s something that’s just detected during your normal eye exam, and you can just have 20/20 vision with no trouble with dry macular degeneration. It can advance through stage 3 to stage 4. Stage 4 dry macular degeneration is its own entity, where you start to lose tissue in the central vision, and this is when you can lose some vision because the ability to see starts to decrease; you start to have some blurry vision, and that’s still all in the spectrum of dry macular degeneration.

Now, each patient may not progress through all of those stages. You certainly can just have one of the earlier stages of dry macular degeneration forever, so it doesn’t mean that if you have stage 1 or 2 dry AMD that it will absolutely progress to stage 3 or stage 4, but the implication of dry macular degeneration is that it’s dry because there are no abnormal blood vessels there, and that’s how we differentiate it between dry and wet. Wet implies that there’s actually new blood vessels that have come from underneath the retina and are producing fluid or bleeding in the eye, and that’s why it’s called wet. It is currently just for wet macular degeneration that we have these injections for treatment.

MICHAEL BUCKLEY: That’s good to know. You mentioned some monitoring at home. What part of that continuum—that spectrum that you mentioned—would be someone who would need to do some monitoring at home?

DR. GAYATRI REILLY: It’s typically patients with dry macular degeneration, because, like I said, you can be 20/20 having no trouble at all. There’s two main ways that we can monitor things at home. One is with an Amsler grid, which is essentially like your grade-school graph paper, which is just a series of straight lines that you look at once a day, once a week, to try to make sure that everything appears nice and straight and that there’s no new areas where the lines have become wavy or no dark areas in this graph. The second way is something called a ForeseeHome device, which is an at-home monitoring device that is a bit more sophisticated with technology and tries to identify any risk factors—that you might be having a change from dry to wet. So, I think for patients who have dry macular degeneration, these two options are great. In addition, the patients who have wet macular degeneration in one eye and they’re dry in the other—these are very good tools to be following that dry eye while you’re at home.

MICHAEL BUCKLEY: That’s good to know. We’re often pivoting to cataracts. We often get questions from people who are concerned about AMD but also cataracts. For example, if somebody had cataract surgery, can they still get the injections? So, the big picture: what’s the connection between cataracts and AMD?

DR. GAYATRI REILLY: Truthfully, the only connection that exists is that they both occur as we get older. So, cataracts are when the natural lens in our eye becomes more opacified—it becomes cloudier—and that just happens with age, typically. That’s really the link between the two.

So, cataract surgery does not worsen macular degeneration. It does not change your treatment for macular degeneration. It does not take away your ability to get injections or anything of the sort. It used to be a very common—what I call now a myth that cataract surgery could worsen macular degeneration, and that’s been long-disproven now. So now, really, the only link between the two is that they both tend to occur as we get older.

MICHAEL BUCKLEY: And related to that, another age-related vision disease is glaucoma. Does AMD cause glaucoma? Does glaucoma cause AMD? Is there any connection between those two age-related vision diseases?

DR. GAYATRI REILLY: No, they’re both highly genetic—completely different genetic lines—but AMD and glaucoma are not truly related one to one, but a lot of patients can have concurrent conditions for a lot of different reasons, but they’re not truly linked.

MICHAEL BUCKLEY: How would someone know if they’re getting glaucoma?

DR. GAYATRI REILLY: Glaucoma is a tough one, because that’s where you have to really know your family history, just like with AMD. Having a family history certainly puts you at a higher risk, and honestly, you don’t really have many symptoms until the very late stages of the disease, so getting these annual eye exams with the dilation and having your ophthalmologist or optometrist looking at your eye…it’s really their responsibility to be looking for the early signs of glaucoma.

MICHAEL BUCKLEY: Staying on these age-related diseases, I was wondering—in practices like yours where you see people of some older ages, what happens when somebody’s at varying stages of dementia? How does somebody keep their vision health as good as it can be when they may be starting to experience some cognitive decline?

DR. GAYATRI REILLY: One thing that we know that’s been long proven now is that your vision is really key to your cognitive function. So, having poor vision in one eye for any reason—whether it’s due to cataracts or whether it’s macular degeneration—for any of these conditions, treating the condition will typically make some symptoms of the dementia significantly better, because we really do rely on our sight for a lot of functions. I have had many patients who have either cataract surgery or started treatment for their macular degeneration, and obviously, it’s not going to fix all of the underlying cognitive problems, but it makes a big difference in the long run.

MICHAEL BUCKLEY: You mentioned a number of times about things people should ask of the doctor or mention. Doctor visits can sometimes be challenging, and maybe you think of a question after you left, or maybe you’re incredibly articulate on the ride or were fumbling your words during the appointment. Do you have any tips from your vantage point about what can make a doctor’s visit go as well as it can?

DR. GAYATRI REILLY: A few things. One, if you’re able to—and not every patient is able to—have someone come with you to an exam, because everybody has a tap-in where you just forget everything that you were going to ask, and there’s a lot of information being poured into you. Having somebody with you can kind of jog your memory of some questions that you might have.

But really, just writing it down. Most of my patients nowadays have a list of questions that they come in with. Usually, we’ll go through the exam, and I’ll go through the things that are going on from my point of view, and then we’ll take 5 or 10 minutes, or whatever time it takes, to go through their questions. And they usually just write it down, and that’s really the best way, because there’s so much going on. You can easily forget—young or old. It’s pretty natural. So, I think writing it down, and having, if possible, somebody with you can sometimes help.

MICHAEL BUCKLEY: I think that’s great advice for all of us. There’s time for a few more questions. I was wondering if you could talk briefly about computers and tablets and smartphones. A lot of us spend a great deal of time looking at the screens, and you hear things about blue light and other health risks associated with electronic devices. Is that fact or fiction? Is it something we should be concerned about?

DR. GAYATRI REILLY: That’s a great question. I think what we know for sure to say is, yes, we want to limit our blue light exposure because, in clinical trials, all that they have found was sort of an animal model—so just in vitro studies. This has not been applied to people at all.

They found excessive blue light exposure can be harmful to the macula. It’s not something we can truly extrapolate to people; that’s not what it was looking at. It’s not what the trials were studying, and there hasn’t been anything looking at its effect in people, but I think just using some common sense. We have this theoretical risk of having some blue light exposure in excess can be harmful, so I think we have the ability of having filters on phones to limit some of that exposure.

In general, our eyes are not meant to be sitting behind a computer or a phone for 10–12 hours at a time. Just having good eye hygiene, which includes taking a break and lubricating the eyes and all of that stuff, is still common sense but important things to be done.

MICHAEL BUCKLEY: Related to that—lifestyle and vision health. How or why does our diet or exercise affect our vision? Because, at first blush, they don’t seem to be connected.

DR. GAYATRI REILLY: For AMD, specifically, we know that having a healthy diet—these vitamins that we were talking about earlier are supplements. They can be found in just having a healthy diet of green, leafy vegetables—spinach and kale—and things that are full of all of these vitamins and antioxidants that you can just get without having to take these supplements. Supplements are exactly what they are: supplements. You can take that in addition, too, if you’re lacking in your diet. So, I still encourage patients to have a healthy diet of green, leafy vegetables. Being overweight is a risk factor for more aggressive forms of macular degeneration.

Smoking is a huge, huge risk factor for more aggressive forms of macular degeneration. So, the same things that your primary physicians are saying to you are the same things that I tell my patients, too. You want to try to be exercising daily. You want to be active. You want to be as healthy as you can, because all of these things are related. As we are less healthy and more overweight, we have all of these systemic effects that affect multiple organs, including your eyes.

MICHAEL BUCKLEY: That’s great for our listeners to know that your overall health is connected to your vision health. Dr. Reilly, we really appreciate the wide range of topics that you’ve covered today—a lot of good, specific things that we can all implement in our daily lives and our next doctor’s visit. I was wondering, just as a concluding question: In the time that you’ve been an ophthalmologist, and in your career, do you think we’re making progress on the disease? Are there things that we, as patients or doctors or scientists, can do to keep this progress going or perhaps even accelerate this progress?

DR. GAYATRI REILLY: We’re definitely making improvements, and that’s the part I find so exciting in doing what we do every day. There are new treatments being investigated. There are new clinical trials being created. There are new genetics in terms of just understanding the disease much better than we did 10 years ago.

[If] you asked me some of these questions 10 years ago, and that’s really not that long ago, I had totally different answers because we just didn’t know that much.  All of this information is just constantly improving, and there’s just going to be better care for patients.

The ability for me, as we started off with, saying to a patient, “I think from where you’re at right now, we have a good chance of preventing you from going blind,” you couldn’t say that 15 years ago. I have no doubt that 5 years from now and certainly 10 years from now, it’s still going to be a completely different conversation, because there are so many new treatments that are on the horizon that might be better treatments that can last longer, less injections, change how we get the medications, all of these different things.

It takes a lot of support. You know, research is expensive, and it takes a lot of support to create a clinical trial for patients to be safe in as well. So, I think just trying to continue to support these avenues is extremely important.

MICHAEL BUCKLEY: That’s good. It’s very encouraging, and I think you’re exactly right. The greater the public awareness and public education, that will help support the exciting research that’s also occurring at the same time.

For marking your calendar, our next Chat will be March 27. We’ll have an opportunity to learn more about therapeutic approaches for dry AMD; I think that’s a nice continuation of a lot of what we’ve talked about.

Dr. Reilly, on behalf of BrightFocus and all of the listeners on today’s Chat, I just want to thank you so much for being so generous with your time and giving everybody a lot of helpful tips and encouragement for the future.

DR. GAYATRI REILLY: Great. Thank you for having me. I’ve always enjoyed these talks.

BrightFocus Foundation: (800) 437-2423 or visit us at www.BrightFocus.org. Available resources include—

• BrightFocus Foundation Chats (Audio Presentations on Macular Degeneration)
• Clinical Trials: Your Questions Answered (Publication)
• Healthy Living and Macular Degeneration: Tips to Protect Your Sight (Publication)
• How Low Vision Services Can Help You (Audio and Transcript)
• Macular Degeneration: Essential Facts (Publication)
• Managing Stress: Caring for the Caregiver (Publication)
• Information on research funded by BrightFocus Foundation
• The Top Five Questions to Ask Your Eye Doctor (Publication)
• Treatments for Age-Related Macular Degeneration (Fact Sheet)
• Understanding Your Disease: Quick Facts About Age- Related Macular Degeneration (AMD) (Article)