Jayson Sacco:

Welcome to this episode of The Ankylosing Spondylitis Podcast. I can't tell you how excited I am today to have Dr. Grace Levy-Clarke on today. The reason is that she is an ophthalmologist based in the Tampa Florida area. And one of the things that affects not only myself and I have the damage in my right eye to prove it, but many of us is the iritis/uveitis issues that we all deal with. So Dr. Levy-Clarke, how are you today? 

Dr. Levy-Clarke:

I'm doing pretty good and I'm really honored to be here to talk to you and your audience. 

Jayson Sacco:

Well the pleasure is all on my side. Now,we were talking a little bit as we got started, and I should have captured this previous but could you tell me I see a lot of people say oh, I've got uveitis or I've got iritis. They're not exactly the same thing, but they deal with the eye. Is that correct?

Dr. Levy-Clarke:

That is correct. So iritis is actually coming from the root word of Iris. So it's inflammation of the iris. And some of the older textbooks will call it an Iridiagnosis of eye colitis. So it's inflammation of the iris and the ciliary body. And the iris is the area in the middle of which you have your pupil. So when you have inflammation in the front part of your eye, that is called iritis, and it can also be called anterior uveitis.

Jayson Sacco:

Oh, interesting. So, when we go into an Ophthalmologist as a patient, and we have a flare coming up in our eyes, you are going to look at the eye and say, is this affecting front of the eye back of the eye? Does somebody generally, can they get both have the front and the back, inflamed at the same time?

Dr. Levy-Clarke:

Yeah. So you can have in inflammation that starts in the front of the eye and does not go anywhere else. It could start in the front of the eye and progress into the middle and into the back. Or you can even get the reverse. You can get inflammation that starts in the middle of eye and goes into the back or comes forward, but it's primarily when we give it a name. We're looking at where we think the initial focus of inflammation was. But we can look at the eye and at least tell you which parts of the eye are inflamed.

Jayson Sacco:

And I know there are lots of treatments from drops to, when I had my first recorded bout of, of iritis; we didn't know what it was. And it progressed to get worse and worse and worse, to a point where I could get up in the middle of the night and just the light from the streetlight would be like someone was stabbing me in the eye. And it just so happened that it was a Sunday afternoon and I said, I’ve got to go to the emergency room. We went there. And it was just by luck. There was an ophthalmologist there. And he came walking in. And he was he says, “You're lucky since I was just leaving. But he says, Let's take a look.” He goes up, I had, like cloths over my right eye and he said, “If this is what I think it is, you're not gonna like the possible treatment that I have to do if it's as bad as you're saying.” 

So he took the cloth off my eye, and he was Dutch. He was from the Netherlands. So he had a fairly thick accent. And I just remember him looking down and he goes, this is going to hurt you because he says you're going to get hit with all the you know, the overhead hospital fluorescent lights. And he pulled the towel off my I kind of opened my eye up a little bit and of course me I'm just gripping the table in pain. And he goes, all I can remember is the Dr saying “Oh yeah, that's a hot one.” Out came the first time and the only time I've ever had a shot into my eye.

Dr. Levy-Clarke:

So, you you're describing this classic what the Ankylosing Spondylitis UVA is or iritis feels like it is a stabbing pain. And it can come on very suddenly. And if you don't treat it, it can progress rapidly.

Jayson Sacco:

Yes, he told me I if I had not been in the emergency room that night, he said I was on the verge of losing that eye.

Dr. Levy-Clarke:

It can be very, very serious. You’ve indicated something that's also very classic, and that is, iritis or anterior uveitis the most typical way that it presents its pain, redness, and extreme light sensitivity. The light sensitivity is because every time the pupil sees the light, it's meant to be able to accommodate or get smaller. And so every time it's accommodating, because the inflammation is in the iris. That's just pain you're feeling the actual movement of the iris. And that is why part of the way that we treat you, it's not a therapy, but it's to help the pain. We will give you what we typically call the red top drop, or a dilate interruptor and that will keep the iris still because if not, there's horrific pain every time you move your eyes.

Jayson Sacco:

Yes, very much so. So as an Ankylosing Spondylitis patient, even if I haven't had in this I think crosses everybody but you as a doctor, if I were to move into the Tampa Bay area of Florida area and saw your name. One of the first things I would do as I'm rebuilding a doctor staff is look for an ophthalmologist. If I called your office and said, I'm not having an issue now, here's my insurance, but I'm an Ankylosing Spondylitis patient that gets uveitis. I write us on occasion, because that's not something we can plan for on a visit. I've not had an Ophthalmologist tell me no, don't call me. I've always seen them say yes. Let us know. We'll fit you in. We'll get you in.

Dr. Levy-Clarke:

Yeah. So if yes, and yes and yes for me, because not only am I an Ophthalmologist, but I have additional training, I did a fellowship at the National Eye Institute, National Institutes of Health. So I did a two year fellowship in ocular immunology after immunology and UVA So what I do is, I care for patients who have any form of autoimmune related ideas and my clinic in Tampa, Florida. That is all I do. I'm a full service console for anyone who has an autoimmune disease. So in addition to telling patients that they can call me, whenever patients move into the area, they come and see me and they establish, so that anytime they call, I know exactly what my plan is going to be. And I have a team of all of the rheumatologists in the area. They'll refer patients, they'll say, this patient does not have any eye symptoms, but they have Ankylosing Spondylitis, and I'll get them established with me.

Jayson Sacco:

And I think that's huge. I think a lot of people neglect that is really, if you have Ankylosing Spondylitis or really any number of different autoimmune diseases but I'll focus on AS, is to have your primary care doctor, your Rheumatologist, a potential Orthopedic Surgeon that you know, and an Ophthalmologist. And that's not in any particular order. But you have that team together. And it's critical that they all have what I consider a good working relationship so that if my orthopedic surgeon for whatever reason needs to get a file or information from you, it's as simple staff calling staff and boom, it's, yep, I know. Dr. Smith, the orthopedic surgeon in my patient is Jason, we'll get it right over to him. As long as all the appropriate HIPAA signed forms are there, obviously, that that's going without saying it's, it's a matter of having the team talk to each other.

Dr. Levy-Clarke:

So I think that's fabulous. I mean you're speaking my language. So I'm very very passionate about forming a team for the patient. And I actually have an educational series that I'm doing online now with a enrichment group that I just started and it is called LIMBLE. So part of what we're trying to do is help to build a community of patients who have autoimmune disease, not just the patients, but also their friends and their family. And the very first series that I did, and that one, we don't have that one uploaded, but all the subsequent ones are now Google Hangout. The first one that I did was, in order to be able to manage your disease. There are two key things you must have must be educated about your disease, so you must understand it. And the second key is you must know who is on your team and are all of the specialists for managing your disease. And so one of the big things that I do in my office is I delegate myself as a team leader. So whenever the patient comes in, my job is to get a history on all the areas that you're having issues. And all those factors are loaded into my EMR system. And every time you come to the office, they get a follow up letter. Because I think it's really important that there is someone who is sort of the keeper of the key. So I know when your last labs were, I know if you're planning to have surgery, I know if there's any change in any of your medication, because it's really important to understand that the disease you have in systemic, it's presenting in your eye or your back or your skin but it's a systemic disease. All of the organs are connected.

Jayson Sacco:

Now I myself am on a biologic called Cosentyx, which is you're aware designed like some of the other biologics to keep inflammation a bay. Does that help to keep uveitis and iritis at bay as well?

Dr. Levy-Clarke:

Yes. So the treatment for UVA, this is your systemic treatment that you're on for your disease. And then we do adjunctive treatments. So if you come in and you're having a flare up, we will give you topical or we can give you a regional or a periarticular injection. What's your long-term maintenance treatment? Is whatever systemic medication you're on? And that is why we're having that a few years ago for the first time ever. We have one approved biologic that can that you can get prescribed just for your eyes. But he's had full indication for all of the other systemic manifestations. What whatever biologic you're on, that's your maintenance treatment for your eye. And the amount and the degree of the episodes that you're having will be determined by whether or not you need this systemic medication.

Jayson Sacco:

Okay, so, no, because there can be other autoimmune issues that affect a person when they have Ankylosing Spondylitis. Does that increase? Like if somebody had Fibromyalgia as well as Ankylosing Spondylitis? Would that potentially increase their chances of having uveitis or iritis episodes?

Dr. Levy-Clarke:

So I'll tell you in the clinic, there are really two big categories or I would say, maybe two big and one small. So, in the US, most of what we see are for patients who get UTI, this is non-infectious causes that that's your big autoimmune sort of facet, you do have to make sure it's not an infection. And in some of our older population, you can get something that's really a cancer, but the big group is the autoimmune group, and the autoimmune disease. They're all tied together. So somewhere between 25% and 30% of my patients are what we call the HLA-B27 positive patients, and I don't know if that's something you're aware of. So that's a specific type of you know, our genetic testing that we can do to see if you have a risk, a tendency or familial tendency to develop a group of eye related diseases, and I refer to them as a family. So you could have Ankylosing Spondylitis, psoriatic arthritis, reactive arthritis, ulcerative colitis, all of these antibiotics, they're all tied together in the same family. I wouldn't say that you necessarily have a risk that's greater. But I can tell you that typically, if you're going to have just one manifestation, it tends to be that one. But at any point in your lifetime, you can get the others. So I have patients who come to me and all they have is just the ups and downs. 10 years later, they complain something else for patients who had just the air. And then 10 years later, they get their first AI episode. So they're all sort of a mixed bag. And there's really no way to determine if one will put you at risk to get more to get the other one. The good news is, whatever medication you're on systemically, it should help to treat all of them as a group.

Jayson Sacco:

Okay, and yes, I am HLA-B27 positive. Yeah, now, we neither my father who since passed away last year, he was never tested to see if he was positive for it. My mother is still alive. She's never been tested for it. So we don't know what the familial line is whether it came from a father or mother. Both of them, I was just gonna say both of them are first generation American. So beyond that, we really don't know any family prior to that.

Dr. Levy-Clarke:

So the HLA-B27, We call it that haplotype where it’s in your pool of genes. You can get it from any, any, any of any of your parents. It's not an hereditary disease. It's just a genetic prediction. But I'll tell you, what we tend to see is if you look through your family history if you have enough generation, so what I typically see is if a young man comes into the office, I go back and I look, you might have an aunt, or an uncle who has it, even though neither of your parents and if a young woman come in, neither parents will have it, but maybe have an uncle. Every once in a while, I've had the same direct family. So I've had I've had a father and a son. But it's not a hereditary disease. It's really just a genetic predilection is basically in your gene pool. And anybody with that gene pool will have the possibility of getting the disease and not everybody with the HLA-B27 will develop it. But we do believe it gives you a higher risk of developing the disease.

Jayson Sacco:

Oh, okay. When we look at that, we've got an ophthalmologist in you, you for your patience, kind of serve as that quarterback, that repository of being able to say, here's what's happening through all the treatment for my patients. I can tell you what's going on here. There. One thing I've always wondered, generally in America as you age, by the time you hit 6065 people start to look at possibly having cataract surgery. Yeah, does that help with like, where I'm going with this as my right eye? I have floaters, cloudy vision, it would never be 20/20. Again, just because of the damage that's been done in it. Right, but I've had a mentioned at one time, something I don't remember how it came about. But one of the doctors said, “Oh, you'll end up having cataract surgery someday in the future because of the damage done to your eyes.”

Dr. Levy-Clarke:

So there are two ways that you can develop cataracts as a patient who has an autoimmune disease, and a patient who has had the iritis. So the first way is taking prednisone in any form can increase your chances of getting cataracts earlier than you peers. So say if your father or mother does not have an autoimmune disease, they might get their cataracts requiring surgery in the 60s or 70s, or 80s. But I have many patients in my practice, who have a rash, and they already have their cataracts out by the time they're 40. The reason is because, again, three ways taking any long-term steroids, critical steroids, that is either by mouth or by injection around the eye, or by drops. All of those will cause you to develop cataracts early. The second reason is because the inflammation that is in the eye that can actually trigger what we call inflammatory cataracts. And then the final reason is just really sort of a combination of both an eye that's been damaged, and I that's getting dropped and the systemic disease that you have, you do end up getting your cataracts earlier, and then some more difficult cataracts to manage. And that's also something I'll try to see if I can send you a link to that too. I just did a publication for the American Academy of Ophthalmology, and it's called Cataracts and Uveitis and the really the take home messages. You've got to make sure that your systemic disease is quiet and well controlled, because that is the key. Whenever you cut into the eyes, you trigger inflammation and so anybody who's going to have cataract surgery, that's why anybody who has cataract surgery, they have to do drugs for a while. But when you have uveitis, it is critical that you have someone managing you understand that inflammation. And that is one of the things that I specialize in. I don't do any cataract surgery myself, although I'm trained, my training now the focus of my of my practice, is medical management of people with uveitis and one of the things that I really stress is making sure that I see you before the cataract surgery, understand your inflammation, and guide the surgeons about how we're going to manage you before, during, and after. So we call that period, the perioperative period because unfortunately, if that's not managed, even if you get great surgery done, you can still end up with just terrible results. And, you know, when I send you that link, you know, I even have we have a nice little video clip in there that shows that one of the things that I know you know about it is called the posterior trachea, so if you have that scarring, it makes the surgery would difficult and so special precautions have to be taken to that region.

Jayson Sacco:

Okay, yeah, I developed a floater in my eye and last summer I was kind of working or helping my parents do some stuff in their yard. And I'm swatting at this bug in front of my face. I'm going, why won't this bug leave? And I said, “It's driving me insane”. And I happen to; you know, in the yard, there's those little gnats, those little noseeums. So I just thought that we kind of what was going on this darn bug wouldn’t go. And I'm swatting in my eye and of swatting my eye and here comes my mom and she goes, what are you doing? And I said, this bug will not leave me alone. It keeps floating in front of my face. She goes, what bug? And I'm like, there's a little black net just going back and forth. There's no bug around you. So I stepped out in the sunlight. I said, well, let's see if it follows me. And I stepped out in the sunlight. And I'm like, there it goes. There it goes. And she goes, there's nothing there. And I'm like, really? And so there happened to be we live in a very small town. And so I just happened to stop into the eyeglass place after I left their house. And I said, I'm seeing a black bug that constantly is going from right to left across my face. The doctor young guy that I know he's come back. He's looked he was no No, no; you've got a floater and I don't know what he said. But he says something in the back has folded, and so he goes, that's what you're seeing as he says you, he says, it's not a bug. So I said, well, thank God because I was going crazy trying to get this thing away from me.

Dr. Levy-Clarke:

Yeah, the back, the middle part of your eye is kept in place it gets its shape or turgor because of the vitreous, the vitreous is a gel and if that gel starts to regenerate, it liquefies. And that usually happens normally. But because you've had inflammation, it's a little bit early. So what you're seeing you're seeing is a liquefied portion. And it gets accentuated when you look into when you're in a lighted area. Because what you're...