Your Eyes and Chronic Graft-versus-Host Disease (GVHD)

Graft-versus-host disease often affects the eyes causing dryness, blurry vision and/or pain. Learn the best ways to manage ocular GVHD.

Presenter: Rahul Tonk MD, Bascom Palmer Eye Institute, University of Miami Miller School of Medicine


Chronic ocular graft-versus-host disease (GVHD) affects more than 50% of patients who have chronic GVHD. A variety of therapies are available and should be approached in a step-ladder manner.

This is a video of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium

Presentation is 40:30 minutes, followed by 28 minutes Q&A


• Chronic GVHD can affect the eye surface, eyelid and inner eye

• Chronic GVHD can cause dry eyes, ulcerations, scarring and cataracts that affect vision

• Most patients with ocular GVHD have a mild case of the disease

• Management should follow a step-ladder approach

  • o Control your environment
  • o Lubricants
  • o Try tear preservation 
  • o Eye surface support 
  • o Immunosuppression
  • o Surgery

• If you have, or are at risk of developing, ocular GVHD, you should be seen by an ophthalmologist who is a cornea specialist

Key Points:

05:48  GVHD can cause dryness and ulceration that can lead to scarring and affect vision

15:32  If you have symptoms of GVHD elsewhere in your body, you should have your eyes checked by a cornea specialist, even if you have no symptoms in your eyes

20:24  First step in managing ocular GVHD is to examine your environment's impact on your eyes

23:52  Preservative-free lubricants help with dry eyes

25:56  Tear preservation strategies to help lubricate eyes 

32:06  Autologous serum tears help support the surface of the eye so it can regenerate itself after abrasion

34:05  Plasma rich growth factors or PRGF can help with corneal abrasions

35:29  Scleral lenses are a special type of contact lens that helps retain tears

37:05  It's important to find an optometrist who had a residency in contact lenses and has been identified by scleral lens manufacturers as a good lens fitter:

Transcript of Presentation:

00:00:00  Overview of Talk: Thanks a lot for having me, and I'm just really honored by the opportunity to take time and speak to you all, and I'm share some of what I know. So, I have about, I would say about 30 to 40 minutes of slides to get through. I don't want to drag on because sitting on the other end of these things, especially this kind of post lunch talk time, it starts to get to be a bore. So, I'm going to go through my slides relatively quickly and leave a good chunk of time to hear questions from the audience. I just encourage people to share their experiences. If you're feeling it, somebody else is too. And that gives us an 

Okay. As I mentioned, again, I'm a cornea specialist at the Bascom Palmer Eye Institute. We have been ranked as the number one eye hospital in the country for 19 years, 18 years consecutively. I'm privileged to be able to do this particular work at the Eye Institute.

I want to break down this talk into three separate sections. The first is what is chronic ocular graft-versus-host disease? How can it affect the eye? What symptoms might you feel? The second is, do I have it and what form of it do I have? And the third and the final, probably the biggest is going to be how can I treat it and what are the options for me?

00:01:24  What is chronic ocular GVHD: So, let's talk about the first. We talked a lot about GVH today. I'm not going to get into the biology of it. That's not what this talk is about. I want to be a lot more practical. I'd rather talk about how it's actually affecting the eyes and the types of things we can see from chronic ocular graft-versus-host disease. I want to separate this from acute GVHD, which is its own thing. Most people that I encounter are outside the hospital are chronic. Those in the hospital –some times I do some acute GVHD consultation, but chronic is what we'll be talking about here.

00:02:02  Chronic ocular GVHD Can affect the eye surface, eyelid and inner eye: It can affect the eye surface. That's probably the principle way in which affects the eye, causing dry eye and a more complicated versions of ocular surface disease, the eyelid and then the inner eye. And I'm going to just use that as a framework to break down what you might see. So, first, we'll talk about the eye surface.

00:02:24  Eyes normally protect themselves from dryness: To talk about dry eye and ocular graft-versus-host disease, we need to learn a little bit about how dry eye happens and what the function is of the eye itself to protect its own lubrication. Our eyes are exposed to the environment all the time. We have a few microseconds of blinking that occur every minute and we're asking them to stay perfectly lubricated and healthy and comfortable. If we sat all day with our mouths open and got occasional times to close them, our mouths would dry right out. So, it's amazing that system works in normal eyes and it's so common to have this system breakdown.

00:03:04  Dry eye caused by GVHD is a particular type of dry eye:  Dry eye is a huge problem. That which is caused by ocular graft-versus-host disease is a specific type of dry eye. But it shares some similarities and that's why I want to go into how this all works.

00:03:19  The tear film that protects the eye is a complex structure: The tear film that serves and protects the eye is not just liquid tear or saline, it's not I wash my eyes out with salt water, right? There's a complex structure that's going on. It's made of oil. That's the surface layer that keeps the whole tear from evaporating. It's made up of aqueous. That's basically the salt containing solution that lubricates your eye, contains antibodies, nutrients and so forth, and then it contains a mucin layer or mucus layer that binds it all to the eye.

00:03:54  Glands produce components that help to keep eyes lubricated: These various components are produced by various glands around the eye. The lacrimal gland being the main gland that's up in the corners of our eyes. The Meibomian glands, which are in the eyelids, which produce this oil layer and then the mucus, which is produced by the white of the eye itself. So, breakdown in any of these specific areas from GVH can cause our dryness and these are just a couple of slides to show how that happens. The inflammation occurring in these glands causes them to scar and causes the damage that makes these glands less functional and able to produce their own tears.

00:04:34  Photos of moderate ocular GVHD: So, here are just a couple of clinical photographs. I always am touchy about showing eye photos. If you're a little bit squeamish, now's the time to look away, but I think it's important to know what's out there. These are my own clinical photographs here. First, we are going to be talking about kind of a mild to moderate graft-versus-host disease. Here you can see we're using a special dye, to highlight areas that are damaged or dry on the surface of the eye. This is highlighted in green here. You can see on the underside of the eyelid, on the top of the eye, this is a relatively mild to moderate finding in the surface.

When we see these sort of damaged spots on the surface of the eye start to get into the cornea, that's the center clear park on the eye, it can actually block the line of sight, which is over the pupil. So, we've all had it, whether or not you have GVH, where your eyes are a little bit dry and you feel your vision's not quite working. We blink a few times. There comes our vision back.

00:05:48  GVHD can cause dryness that blinking won't resolve: In more moderate cases of graft-versus-host that affects the eyes, that dryness doesn't just blink away. So, we can have days on end where eyes seem to be blurry because of how bad that dryness is. In some cases, we can have breakdown of the mucus layer into little strands or filaments and we call us filamentary keratitis. This causes pain and the irritation, light sensitivity and so forth. All of this is mild to moderate.

00:06:18  GVHD can cause ulcerations on the eye which can lead to scarring that affects vision: This is the other way, the more advanced way that the graft-versus-host disease can affect the ocular surface. And thankfully most of these things are mild. I want to draw your attention to this photograph on the top right. This is what's happening. When the dryness is so advanced, and remember these kind of green areas are the dye, which is, we're using a special light to identify the areas that are dry on the surface. You see how much of that dye is being picked up on the eye surface and how almost the entire eye surface is made up of that dye here.

When it's that dry, just like dry skin, it can crack just like your skin might crack. We call that an ulceration. An ulceration of the corneal surface. As we say in Miami, no bueno, right? So, what can happen? We can have scarring which can cause decreased vision in the long term, we can have infection which can be destructive and in some cases we can have melting of the cornea. Melting, meaning the corneal thickness can gradually get less and less and less until it's to the point that it may be paper thin. And in fact, when the eye can perforate. So, in this case, you actually see a hole in the cornea where some of the tissue inside of the eye wants to come forward, and this is actually a little bit of iris tissue that's plugged that hole. This is a surgical emergency. Thankfully rare.

In cases where this has happened on again, off again, on again, off again for months to years, you can have a more chronic picture such as this: a scarred cornea of vascularized cornea, meaning all of these blood vessels growing into an area where they shouldn't be. Does this cause blindness? Not necessarily. So, we like to think in the cornea that corneal blindness or limit to vision from the eye is something that may still be treatable. We can consider doing corneal transplantation some of these cases. The prognosis for corneal transplantation depends on how well the ocular graft-versus-host disease is controlled and depends as well on how much we can control immune recognition or your body recognizing that transplanted cornea as foreign. We'll get into some of that later, but I don't want you to think that, "I'm going to be blind" because there's always options, Even if you're in some of these severe stages.

00:08:50  GVHD can scar the eyelid cause it to fuse to the surface of the eye: Eyelid. Second big way that the EYE can be involved in graft host disease. So, it's a lot more brief, but what you can see here is some scarring taking place of the eyelid margin where your lashes should be. When that scarring is severe, it can actually fuse the eyelid to the surface of the eye, causing the eye to be unable to move. Double vision can occur from that, can also cause the eye to remain open, which more broadly is going to expose the eye to more damage, right? We can't blink, we can't close our eyes, our eyes remain open. We get more damage and the effect get compounded. So, that's how you know sometimes also more mild versions of this, which you might see, is that scoring producing a lid malposition, which means the lid turns in towards the eyeball and causes eyelashes to touch the cornea surface.

Okay. Thankfully, much of what I'm showing here is severe and rare. And to be frank, for the patients in this audience who have their eyes open and who are able to see these images, I'm expecting that the majority of patients are not actively going through any of this right now. Those patients are at home with their eyes closed, wondering what they can do while they can see me or they can see my colleagues and we can help them.

00:10:21  GVHD, steroids and other issues can cause cataracts to form inside the eye: Inside the eye. How can we have an effect? So, the most common is cataract. Okay. This particular photograph of a steroid induced cataract, meaning it came about with the use of either steroid eye drops or oral steroid. This doesn't necessarily mean that graft-versus-host did it, because we know that the cancer, if you may have had cancer, cancer itself can cause cataract. Radiation, chemotherapy, can cause cataracts. Steroid that you receive as part of your transplant can cause cataract. So, if you've got a cataract and you're wondering, "Does this mean that I have ocular graft-versus-host?" it doesn't necessarily mean that. It's just a very common problem. We'll talk about that a little bit later.

00:11:01  Problems with the retina and back of eye are rarely caused by GVHD: Thankfully, issues in the back of the eye, meaning bleeding of the retina, damage to the optic nerve, glaucoma, these tend to be extremely rare. So, again, when we're coming back to is this a blinding condition? In ophthalmology, things that we consider permanent blinding conditions are end stage glaucoma or the dysfunction of the optic nerve, which translates vision to the brain or irreversible damage to the retina. Thankfully, both of those tissues are only exceptionally rarely involved in graft-versus-host disease. So, most of what's happening is on the surface of the eye on the eyelid, and as bad as all that looks, 

00:11:48  More than half of patients with chronic GVHD have ocular GVHD: Okay, so next broad segment of the talk, do I have chronic ocular graft-versus-host disease? If you're in one of those severe pictures, of course you probably know it by now, but most folks in this room or people who have had a transplant are wondering, "Geez, do I have this? Do I have to be worried about this?" Let's talk about how common it is. And how you might know.

00:12:10  Most patients with ocular GVHD have a mild case of the disease: So, we have about 22,000 stem cell transplants that occur per year, about 8,000 of which are allogeneic or from an unrelated donor. Depending on the matching and so forth, we have about 30 to 70% of those patients having systemic graft-versus-host disease - so, other organs involved in the body. Of the patients that have graft-versus-host disease, almost all of them have some form of ocular graft-versus-host disease, at the very least, more than half, but up to 90%, which means about 3,000 new cases of ocular graft-versus-host disease per year, about 50,000 patients that are dealing with this condition. The great news is that the vast majority of patients with ocular graft-versus-host disease fall in the mild category and may never go into moderate or to severe. So, that is the good news.

So, how do you know? This slide gets more into the science and the background as to what your ophthalmologist might be looking at to say you have ocular graft-versus-host or you don't. And I want to identify that it's not quite clear cut because dry eye is exceptionally common. If you've received a transplant, if you've had chemotherapy, dry eye is just common. Your neighbor might have dry eye just from, you know, using the computer all day long or having had a late night. So, how do you know whether it's whether it's ocular graft-versus-host disease? So, we have criteria to help us find that out.

00:13:38  How do you know if you have ocular GVHD? The most well-known criteria which a transplant physician may like to use is the National Institute of Health criteria. That's the NIH criteria which basically says you must have graft-versus-host disease of the body first to be called as having ocular graft-versus-host disease. And then you have to have characteristic findings which your ophthalmologists is going to pick up on exam. In the ophthalmology, in the eye care community, we have been pushing back against that and we've said because of how common it is that the eyes are involved in graft-versus-host disease, why are we saying that you cannot have ocular graft-versus-host disease before you develop graft-versus-host disease of another organ? And so we've proposed international consensus criteria and I'll just break down briefly what this slide is.

It's just so that you know, what we do is we take a couple measurements. One is a symptom questionnaire, one is the amount of staining or that color that you see on the surface of the eye, special measurements that show how much tears you make and so forth. We grade them on the basis of severity and then we give you a point score based on what we find. We then take into account whether or not you have known systemic graft-versus-host disease or not, and give you a score which says no, there's no ocular graft-versus-host disease or it's probable or it's definite. 

So, the point here is that you might be in a category that doesn't have graft-versus-host disease of the body, but because of what we find in the eye, you might meet the criteria of this is definitely ocular graft-versus-host disease. And this is the first way in which your body is showing you that she might have this condition. I don't want you to fall into the trap of thinking it'll only be the case if I have GVH elsewhere. That's simply not true.

00:15:32  If you have GVHD elsewhere in your body, you should have your eyes checked by a specialist, even if you have no symptoms: So, what are my general principles as far as whether or not you should get looked at for graft-versus-host disease? A couple things. 

If you have no symptoms, if your eyes feel great, hardly putting in artificial tears and you have no graft-versus-host disease anywhere else in the body, you probably only need routine eye care. So, as appropriate for your age, have an annual or biannual exam with an optometrist and ophthalmologist and try to see if there's anything there, but don't really need to go crazy there. If you have no symptoms but you have graft-versus-host disease with any other organ, you probably should be seen by a specialist. Why is that? Because up to 60-90% of patients with graft-versus-host disease somewhere in the body have got it in the eyes too. Even if they don't feel symptoms of it.

00:16:25  Neuropathy may cause you not to feel symptoms of ocular GVHD:  Why might they not feel symptoms? There's a condition called neuropathy, which basically says we might not feel the pain and irritation to light sensitivity. And what we might see instead is just maybe blurry vision that we attribute to something else that is truly GVH. If you have symptoms and no systemic graft-versus-host disease, you probably should still be seen because we mentioned that the eyes might be the first way in which the graft-versus-host disease is showing up. So, if you have symptoms, light sensitivity, pain, irritation, redness, probably should get a look. If you've got symptoms and systemic graft-versus-host disease, I hope that all of you are already being seen.

00:17:08  If you have ocular GVHD, you should be seen by an ophthalmologist who is a cornea specialist: How can I treat my graft-versus-host disease? So, this is going to be the broadest part of our talk here. So, the first thing is to find the right partner. And my recommendation is that if you fall into those criteria that you find a cornea specialist to work with. So, eye care and the word eye doctor is a broad term and we need to kind of make sure that everyone's talking the same language. And optician is somebody who fits you for glasses. Right? An optometrist is somebody who does the prescription for eyeglasses, contact lenses and so forth and who's also able to do screening for more serious or deeper eye conditions. Most of eye care in America is handled by optometrists and they certainly and definitely, especially the good optometrists have a role in eye care even in GVH.

An ophthalmologist would be a medical doctor. Somebody who has gone to medical school and then taken up sub specialty training in surgical and medical treatment of the eye. So, that I insist on, because you need to have somebody that's able to translate what's going on overall in terms of the health picture of the body and not just to hone in on the eyes alone.

A cornea specialist, which is really what I'm looking for. If you can find one in your community, or at least the near city, has got four years of medical school, a year internship, three years of ophthalmology specific residency training, a year or two of cornea, plus or minus ocular surface fellowship training. Most importantly, familiarity with ocular graft-versus-host disease.

This is a sort of minimum requirement in terms of having somebody available for consultation if things get bad. You do not need to see this person just to be screened unless you're feeling symptoms. So, you don't have to make a big travel or go to the local city to do that. But if you happen to have one in your community, by all means, that would be the person to follow with.

The key also is just to make sure that you're finding somebody who takes the time to listen to you and really whom you connect with. So, I would rather have somebody who may not have some of this training criteria, but actually cares about what's going on with you and is willing to pick up the phone when you're having trouble.

00:19:34  Treatment of ocular GVHD follows a step ladder approach: Treatment follows a step ladder approach. And there's a variety of steps on this ladder that we're going to go through: the environment, lubrication, preserving your tears, anti-inflammatories, surface support, systemic immunosuppression, and then surgery.

So, one of the things that we sometimes jump to and we're guilty of this as medical doctors as well, is when somebody has more advanced disease, we jump here to the top of the pyramid. What we really need to do when we first meet our patients that are dealing with significant ocular graft-versus-host is really dive deep on the bottom half of the pyramid and make sure that 

00:20:24  First step in managing ocular GVHD is to examine your environment: So, let's start with the environment. So, basic things, I'm not in the house with you, right? So, I don't know what exactly is going on and some of these things may seem common sense, but really work it out. Take your pad and take a day in the life. How am I using my eyes today? What am I asking my eyes to do? Am I asking them to do too much? Have I got fans whirling around all the way in the house? Do I sleep or does my partner require that we sleep with a ceiling fan overhead that dries my eyes out overnight? Am I just using my iPad, my phone, my electronic media more than I should and know in my heart that I need to take more breaks than I am?

Am I staying hydrated with a couple of good sips? Not a gulp of water every three hours when you remember, but just a good couple sips of water on your little Camelback or you're a little bottle, handy, little sips of water throughout the day? Am I abusing my eyes with the use of heavy, chemically treated eyeliner, mascara, and so forth? And that's not to say that we can't, but it's to say that we need to be cautious about removing it and using the right products.

00:21:36  Use a humidifier to add humidity back into your home's air: What can we do to modify our environment besides those other things? The simplest thing is just to say you get a humidifier by your bedside. If you're the type of person that likes to have your home be cool, that AC is running here in Florida. We know our ACs are running, that's taking all the humidity out of the air, sucking it dry. So, restore some of that at your bedside with a cool mist humidifier. If you are waking up dry, you have got a moisture problem overnight. You should not be waking up dry. Your eyes should be restoring themselves overnight, right? Your eyelids are closed, you're not doing anything with them. You should wake up feeling great. So, if you're waking up dry, you got to figure out and do a little detective work as to why.

00:22:17  Moisture goggles can help with dry eyes: So, we can talk about some gels and lubricants overnight. But beyond that you might benefit from something like a moisture goggle. This one is made by Tranquileyes, a company called Tranquil, T-R-A-N-Q-U-I-L, Tranquil, the word eyes. There's a bunch out there, but basically it's just a mask because that's got a little seal around it, a little foam seal that you wear at nighttime and it just keeps the environment around your eyes moist that even if your eyes open up as a result of those eyelid changes, what have you, you're going to remain protected. During the day, might benefit from sealed eyeglasses. So, I oftentimes in my more moderate, even up to the severe patients, even the patients, I mean some folks I heard earlier from questions are familiar with some scleral lenses and so forth, but it doesn't work for every patient.

00:23:05  Sealed eyeglasses can help retain moisture in eyes: Sealed eyeglasses. Something you go out to like a Harley Davidson store and you ask for some motorcycle glasses. They're going to find you a pair of sunglasses or a clear pair of glasses that's going to have a foam rim around it so that you're comfortable throughout the day. You have an environment around the eyes that's moist and your eyes remain well lubricated. And then you can always go to your optician to take that frame and say, can you put in a prescription for me? And you can put some tints in there, UV protection or whatever else you need for your light sensitivity. So, all of this stuff, and we only got past the first, which is environment. So, you can see that when I start to see patients up here, I need to make sure that we've got all this stuff going on first.

00:23:52  Preservative-free artificial tears help with dry eyes: Next step is lubrication. So, what lubricants do we use? All of the data shows that within a few specific categories, the brand names, some patients might benefit from others versus other patients that prefer a different brand names. So, the brand name is not particularly important to me. Find what works for you. 

There's a couple of things I do insist on. The first is preservative-free artificial tears. Must be preservative-free. And I know these are little inconvenient to use, these ones in the little break off containers. I get it, but see if you can find a way to make it work. The ones made by Refresh, you can recap. I know this is going online, they don't want me to say that. But, if you treat it like fresh food, left out on a counter without preservative and all of that, you can recap it and try to use it a few hours later if you need to. Keep it in the fridge if you're going to do that.

00:24:49  Gels can help keep eyes lubricated at night: Have a daytime and a nighttime strategy, right? So, these drops are great during the day, but she needs something thicker and longer lasting at nighttime. So, you're looking more into the gels. There's some that are more partial too. This is a good one. GenTeal, just a nice preservative-free gel. It's not as thick as an ointment. Something you can put on in a little bit at night. You don't have to put too much, put it right in the little fornix, you pull down your lower lid, put a little bit there, go off to sleep. It's going to blur your vision, but it's the last step before you go to sleep, so it shouldn't be that big a deal.

00:25:20  Avoid products that say get the red out - they can make dry eyes worse: Avoid Visine, Clear Eyes, things that say, get the red out. We know that GVH produces red eye. I get it, I get it. And you want to put those drops in to make your eyes look better. Problem is those chemicals will add up and they'll cause more harm than good. And if you keep on putting those types of drops on the surface of the eye, you're going to change the ability for other drops that I need to use, to actually have the proper effect. So, I would avoid those. I mean maybe sparingly if you're going out to a social function, but I try to avoid it.

00:25:56  Tear preservation. So, how can we preserve the tears that we do make on the surface of the eye? The first thing we talked about with to improve the oil layer, so decrease the tear evaporation. What does that mean? Let's get a little bit more oil produced by these glands. We know that they're inflamed and there's a little bit of scarring happening, but they're still making some oil. If only we'd help them and give them the boost to make the oil.

00:26:19  Warm compresses on the eyelids can help eyelid glands produce more protective oil: So, warm compresses, eyelid hygiene. This is little scrubs and so forth of your eyelashes. You can find so much. Just write in the word eyelid hygiene. The reason I mentioned this is because this isn't just particular to graft-versus-host disease, but there are millions, millions, and millions of Americans that deal with a dry eye. So, this is stuff that there's plenty out there on the market to tackle getting these glands to produce more oil. Fish oil, flaxseed oil supplements can be helpful. And then in some cases, prescription medication as well.

00:26:54  Punctal plugs can help retain tears in the eye: The second thing to help your tears stay on the eye. So, the first was to keep them from evaporating, right? The second one is to reduce them from draining out of the eye. So, the analogy is a bathtub, right? You have a bathtub, you have a faucet. That faucet in this case is your lacrimal glands, making tears to put on the surface. The faucet in ocular graft-versus-host not working to great. Our bathtub is a little low on tears. What can we do on the other end? Well, we can put a stopper in the drainage spout for the eye to keep more tears on the surface for longer. Very, very, very simple, very practical.

So, punctal plugs. If you're having dryness and you've done those other little steps on the ladder and you're feeling that you're just chasing yourself around the clock to put in eye drops and you haven't had something to reduce the drainage of tears, that's just a very easy next step for you. Punctal plugs do fall out, however. They're little pieces of silicone that we put there. So, sometimes you rub them out, sometimes they fall out. If patients benefit from them and just, get annoyed with the fact that they fall out and then the effect wears off, then we can consider closing the tear duct permanently with a minor procedure. Again, fairly simple stuff to do right in the office.

00:28:19  Steroid-spearing anti-inflammatory eyes drops, available by prescription, and help with dry eyes: Inflammatory. So, now we're getting into the more moderate, beefy part of the talk. So, let's talk about steroid sparing drops. These are drops that are available by prescription for the treatment of dry eye, and it just happens, they're also anti-inflammatories. The first is, lifitegrast, which is known by the brand name Xidra. Neither of these is generic unfortunately. So, there's always a challenge with getting the prior authorizations and coverage from insurances, but hopefully your ophthalmologist can help to navigate that maze. And the second would be cyclosporine, which is known by the brand name or Restasis, which may come generic very soon.

These two are anti-inflammatories. Some people might recognize the name cyclosporine from medication that they'd taken by mouth, right? So, we can put it in eye drop form right where it counts on the surface of the eye and avoid all those nasty side effects by the oral supplementation.

00:29:19  Steroid drops may be needed in some cases and the benefits outweigh potential side effects: In many cases, these may not be potent enough. So, in those cases, you're looking at taking a actual steroid drops for the eye. The first thing that I'll say is everybody has heard at some point, "Geez, well, I don't want to be taking steroids drops because of the nasty complications. So, you hear glaucoma, you hear cataract, ear infections, and I want to just kind of break the stigma on the steroid use for a moment on the steroid drop use that is, first of all.

I would much rather see you have some minor issues with those problems than see you with an inflamed graft-versus-host disease, which is actually causing damage to the glands and to the eye surface. If you have a problem with high pressure, we talk about steroids increasing high pressure and causing glaucoma, right? That happens in a small percentage. About 10% of the folks in this room that are on steroids might have an increase in their eye pressure. If it happens, you can typically move over to a different type of steroid eye drops and stay on steroids. If it's bad enough, you can control it with adding another drop that keeps the pressure low.

00:30:28  The long-term risk of glaucoma from a mild steroid drop is fairly low. The reason why knee-jerk people don't use the steroid as frequently is because we have to deal with this other massive population, which is bread and butter, dry eye, that if we had millions of people that came in and we were using steroids aggressively in that population, you'd have a few people having unwanted consequences of that. Right? So, because we've kind of taught ourselves as a community not to use steroids for this population, we apply that to our ocular graft-versus-host population, which is not fair to this population.

00:31:09  Clinical trial with Ocugen may help patients with dry eyes: If we need them, we use them. Let's talk a little bit about this clinical trial. So, Bascom Palmer Eye Institute at the University of Miami and talks to bring, this particular eye drop into a clinical trial. There are some other sites nationwide that have already enrolled patients. We're on an advanced phase clinical trial now through Ocugen for this medication. It's an eye drop. Right now it's called OCU00, but it basically is a reformulation of a very safe drop we've been using for many years. It really is something that might have a benefit with very little harm, and basically it's tackling the pain, redness and inflammation.

If you have an interest in anything to do with that trial, please let me know. I know the medical director for that. I would be interested in hearing from you and I can pass along your name and contact information, and he might be able to help you get enrolled.

00:32:06  Autologous serum tears help support the surface of the eye so it can regenerate itself after abrasion: Surface support. So, let's think about it this way. The very surface of the cornea is skin, a thin layer, 50 microns thin layer of skin that we're asking to take a beating and to regenerate day in, day out, day in, day out. So, what we want to do is support those skin cells on the corneal surface from being able to regenerate. Just like if you get a little cut or a scrape on your hand, you're going to heal that over, right? So, the same thing. If you have severe enough dryness or an ulcer or micro little abrasion that you might not know it is an ulcer that heals itself over, as much as we can do to help the healing, the better off we'll be.

So, the first thing mentioned in this category is going to be autologous serum tears. How many people in the audience are just familiar with autologous serum tears? Okay, so what these are, are basically eye drops that are derived from all the good stuff in your bloodstream. So, what we do is we have a nurse come out. I would say autologous serum tears are now pretty common. In every state, every vicinity, there's somebody probably within, 150 miles, I would say that's got access to autologous serum tears now. So, it's accessible. It should be accessible to everyone in this audience. A nurse would come out to your home or you'd come into the center to have your blood drawn and come back to the lab. It's going to be spun down, all the red stuff, the blood and the white blood cells are going to get ... we'll spin it down, separate that out and take just the serum, just the plasma.

From that plasma. We're going to dilute it in various concentrations to make a specialized artificial tear. That artificial tear is going to contain all of the special healing nutrients or the nutrients that are going to help the eye surface regenerate and kind of heal up from little abrasions or dry spells.

00:34:05  Plasma rich growth factors or PRGF can help with corneal abrasions if autologous serum tears are not effective: The next stage would be plasma rich and growth factors or PRGF. And this very few centers are participating in or making. Bascom Palmer happens to be one of them. This is really for the most advanced cases that autologous serum tears have not helped.

What we'll do is rather than just, take the blood, spin it down, we will actually activate, some of the blood cells, we call them platelets that are in the blood causing them to release a very high concentration of healing compounds. So, we know that this works because just as we have a cut here, mother nature has it so that platelets help to clot that cut and stop bleeding and mother nature imbibed these platelets with all sorts of healing compounds. So, we take those platelets and we cause them to release their compounds to increase almost 50 fold the concentration of that healing strength in the plasma rich and growth factors.

00:35:08  Amniotic membrane. This is human placental tissue, which can be applied either in the office in a sort of self-retained contact lens or it can be applied in the operating room. And again, a lot to do with having nutrition for the repair functions for the surface of the eye.

00:35:29  Scleral lenses are a special type of contact lens that helps retain tears: What is the difference between scleral lenses and another contact lens? So, a soft contact lenses, typically something that sits right on the surface of the eye, irritating and abrading the surface of the eye, right? So, it can actually worsen your dry eye condition.

Scleral lenses are very much different. These are larger lenses that remain open or permeable to oxygen. Oxygen still gets through, but they sit beyond the cornea surface. They sit on the white of the eye comfortably for most patients if they're fit right, comfortably sit on the white of the eye so that it vaults above the entire surface.

So, you can see here the lenses, this line here and the cornea is this line underneath it. Okay? It's a cross section, so you can see because it vaults above, there's no contact at any point between that lens and the cornea surface. That area is going to be full of tears. So, when you put in a scleral contact lens, your eyes going to be bathed in fluid all day long from the moment that you put it in until the moment that you take it out.

That's going to help for three reasons. The first is that it's going to give you a sharpness to your vision if you're having vision problems from graft-versus-host disease. Two, it's going to decrease the fluctuation in your vision. Times where you feel oh my vision gets bad and then worse, then bad and worse, it'll give you a more steady vision. And the third and the most important is it can help heal again, the eye surface from ulcers and those dry spots that we mentioned.

00:37:05  It's important to find an optometrist who had a residency in contact lenses and has been identified by scleral lens manufacturers as a good lens fitter: The biggest challenge is finding somebody very good to fit a scleral lens. So, even if you've tried it, I heard a question the audience early about somebody who was recommended scleral lenses, kind of had heard about them and maybe wasn't able to get fit the right way. At the very least, you got to find an optometrist and your ophthalmologist would know who can do this, that has a residency in contact lenses. 

Beyond that, it would be nice to find somebody who's been identified by the scleral lens manufacturers themselves as being a pro fitter, let's say. BostonSight happens to be one example of a very well-known manufacturer of a scleral lenses, and they have a website, You go through that website, pretty straightforward and they'll tell you who in your community fits that type of lens. And a lot of different and other organizations have that as well.

Getting a right fit is so important to being able to wear them comfortably throughout the day and having somebody that's patient and can explain to you and be refitted, each manufacturer is different. Right? So, even if you tried this and you think it's not for you, I'm going to tell you the number of times that I've had to push people, push, push, push, push, push, push to finally get the right lens. And it's been, in many cases, life changing for those patients.

00:38:32  Additional immunosuppression may be needed if other options have failed: Immunosuppression. We're coming up to the top of the ladder here and this is when we're working with a transplant physician to say, I'm really back against the wall with what I need to do here. And what we really need to do is to control the graft-versus-host disease across the whole body.

00:38:48  Surgery may be needed if nothing else works: And the last surgery when and if it's needed. Get cataract surgery, which typically is a fairly straightforward affair, although graft-versus-host patients can have a little bit of issues in difficulty healing. Amniotic membrane placement. We mentioned that before. Repair of eyelids. Eyelid closure if it's necessary, if you have a problem with exposure. And then in very advanced stages we talked about transplantation of the cornea, partial or full thickness or a stem cells on the corneal surface. Those stem cells that actually help the skin of the eye to heal themselves.

00:39:23  Make sure you are seen by a cornea specialist: So, take home point. If you have or you're at risk, make sure you're seen by a cornea specialist. If you don't have one right in your community, find a good local eye doctor that you can partner with and then travel to the city to see the academic cornea specialist and make sure that the two are communicating so that she had somebody in the event of emergency. Understand while there might not be a cure for this condition, there's almost always control. The vast majority again of ocular graft patients will have mild involvement, and even the ones that are severe. I don't view this as a indomitable condition except for the rarest of patients. And then there are still a wide variety of treatments and we are just keep on pushing on the research to get to more.

Thank you very much. I also want to acknowledge my mentor Dr. Victor Perez, who was a pioneer and a ocular graft-versus-host disease, who trained me at the Bascom Palmer Eye Institute and it is now up at Duke. So, thank you very much for the opportunity to speak.

00:40:35  Question and Answer Session: Thank you Dr. Tonk. We'll now open the floor to questions. I can walk around with a microphone and there's also a microphone here to share those, and we have about 15 minutes of questions.

00:40:45  Do soft contact lenses have a role in the treatment of GVHD: [audience] Hey, I'm Natalie. I'm 14 years out from my transplant and newly dealing with eye GVHD secondary to a one-eye cataract surgery. I refuse to have the other one done because it kind of kicked off this whole host of nonsense. So, I'm currently at the soft contact lens phase. And I'm frankly afraid to do it. It dry stuck the first time and I'm really not interested. So, I'm wondering if I should just skip over to the scleral lens part and not waste my time, energy and physician's time dealing with soft contact lenses, or have you seen some usefulness in there with the SLK parts

[Tonk] Yeah. Well, so the question is, do soft contact lenses have a role in the treatment of ocular graft-versus-host disease? So, the condition GVH can produce, as you know, a variety of different things on the eye surface. And in this condition it looks like you may have off again off again our SLK, which stands for superior limbic keratoconjunctivitis. For patients in the audience that may be experiencing it themselves, what they might notice is a segment or specific area on the eye surface, which just has beat red blood vessels and typically on the top of the eye there.

So, we know that inflammation is part of that condition. We know that mechanical trauma as part of that condition as well. So, the classical treatment, again, SLK is caused by a variety of other conditions. And so the classical treatment is soft contact lenses. One of the issues is that in ocular GVHD, contact lenses, especially the soft ones, may set off some other problems on the cornea surface. For a brief period, helpful. For a sustained period, can be problematic. And, one of the issues is that again, we have while you're in contact lenses, the inability to use something more potent like a steroid eye drop. Right.

So, there are a variety of different steroids eye drops and there are a variety of different anti-inflammatories across the scale as we mentioned. When we are in contact lenses, we hesitate to use those because of the risk of infection. So, just taking it as a whole, I think with those complications that I'm hearing, you probably would do well if you feel comfortable putting a lens in and out with a scleral contact lens. I'll also point out, cataract surgery. So, it sounds like things did not go well after cataract surgery.

Yeah. Yeah. And, it is. It is GVH, but that doesn't give a free pass to the fact that it happened.

00:43:32  Recovery from cataract surgery may be more difficult with GVHD: Yeah. Right. So, you have to be prepared and your cataract surgeon, whomever it is, if you've had a transplant, you are going to be dealing with cataracts surgery and it's not going to be your neighbors cataract surgery who had it done, piece of cake, looks great the next day and so on. Right? We know even in patients that have conventional dryness that even in standard dry eye patients, no GVH, that dryness can be worse for two to three months following surgery and usually we can kind of help them and support them through surgery.

GVH patients are unique. If there is evidence of active GVH on the eye surface, it must be controlled before cataract surgery. Must.

 [inaudible 00:44:13].

Yeah. The bread and butter way to know that is, how bad are your symptoms, are your eyes red? Redness is mother nature's way of just telling you that, that condition is active, right? So, must be controlled. Some patients, the cataracts are so bad that they can't see and they can't wait for complete control before proceeding with cataract surgery. So, in those cases you can do something at the time of cataract surgery, for example, using a contact at the time of the cataract surgery to preserve from damage or putting amniotic membrane on the surface of the eye and so forth. So, there are a variety of different way ... Or, using for a period of time, oral steroids around the time of cataract surgery if we need to, to make sure the GVH activity in the body is low.

Ophthalmologists, to be frank, we've moved so far away from the practice of medicine and doing ophthalmology that the prescription of oral steroids becomes a little "oh, touch and go like we don't want to go there". But we know with this population we might have to in some cases.

00:45:23  Question about managing mucus in the eyes: Thank you. My son, he's 13 and he received a bone marrow transplant 20 months ago and he's having issues with his eyes, but it's not redness or a little bit dry. It's mostly kind of mucus. It seems an infection, but he already visited the eye doctor three times. Sometimes it's better. Sometimes it's worse. Since two weeks ago it had been really, really bad. He's going to high school and everything so it looks really bad. He's using the drops now. I have the name in Spanish. It's [Spanish 00:45:59]. He's using that now. One of the eyes is better, but he already visited the Cornell doctor. But I think that he doesn't have enough experience related to GVHD. So, he said we have to wait. So, I'm sure this is part of a GVHD situation or not.

[Tonk]:  Yeah. So, it depends on whether the mucus is just kind of strands that are building up, down here and waking up with a little bit of mucus in the morning versus ... I don't know if I can get this back up, but we were showing some pictures earlier. Is this back up? I don't think I can get that picture back up.

[audience] I think I know which picture.

[Tonk]:  You saw the picture. Filaments, which are mucus on the surface of the cornea. Those two things are different. He has filaments?

[audience] Yeah. The doctors say a little bit, but sometimes he has mucus everywhere.

[Tonk]  Acetylcysteine, what it does is it breaks down mucus. That's basically what it is. It dissolves away mucus. Why is the mucus occurring? The mucus occurring because we have three separate again, components of the tear film. We have oil, we have aqueous or the fluid, and then we have the mucus, and we need all three points. If we don't have enough aqueous to thin out that mucus, it clumps up, it clumps up and we wake up with a little bit of mucus and we wipe it away. 

But in bad cases it can stick to the corneal surface and cause light sensitivity and pain and all that. So, the kind of classic treatment for that is acetylcysteine, which helps to kind of break down these filaments and dissolve them away. The problem is they recur. So, it's not a long-term satisfactory solution. So, the real goal is to figure out what's the underlying problem, and almost certainly it's inflammation. So, he really needs an anti-inflammatory.

Now what the challenge is with your son is that he's young. And so, you want to avoid steroid drops because you don't want to put him on a track of having cataract surgery young in life.

[audience] He already has cataracts because he receive-

A lot of oral steroids, and so for-

Yeah. But a lot, like for 10 years.

[Tonk]  He's had cataract surgery already?

[Audience]  Yeah. No. No, no. Not yet because they're kind of a small-

[Tonk]   he has the cataracts.

[audience]  Yeah.

[Tonk]  Yeah. So, the inflammation is the problem here. If he's in that category of having had this condition, most likely he has probable ocular graft-versus-host disease and it sounds like he needs to be on a regimen. So, the idea is once you get rid of the problem, you're not off the hook. So, once those filaments go away, what is going to be your regimen on that step ladder approach so that these do not recur? And it's a long process. I'm not going to say that patients that come to see me, I have an answer, they walk out the door and they never come back. That's not how it works.

The way that it works is that we treat the condition. We then see what is the minimum amount of preventative treatment that I can use so that the condition doesn't recur and it recurs. And then the patients know because I've told them let's not lose faith because we're looking for that regimen that causes the least harm and keeps us comfortable. And that's the balance that still needs to be found.

[audience] Okay. So, thank you very much. And the other part is just that, I-

[Tonk]I will speak a little bit more after.

[audience] No, I just went to let the other people here knows that I receive a corneal transplant and cataract surgery and I use the scleral lenses and I'm really good. So, don't be afraid about that because it has a long process, but I'm really good. I, actually last week, I was allowed to start driving again. So, I'm really, really good. Just wanted to let you know that.

[Tonk]  Good to hear.  That's great to hear.  Thank you.

00:49:51  Question about BlephEx: I'm 17 months past transplant, 11 months of ocular GVHD and a good partner. So, it's very slow, but steady improvement. What I didn't see recommended was BlephEx, that kind of the turbo wash of the eyelids. Where do you fall in on that?

00:50:09 [Tonk]Yeah. So, in that little step ladder approach that we had, we talked about tear preservation on the surface of the eye. And one of the things that preserves the tears is having good oil. And we talked about what can we do to get more oil on the surface. One of the things that know helps oil production is being kind and gentle Meibomian glands, which are right where the eyelashes are. So, if we keep that area clean, free of bacterial debris and overgrowth and so forth, we are promoting more oil production, which in mild cases of GVH can be helpful.

The key is to figure out how much of a problem that specific issue was for you. So, BlephEx, for those in the audience that aren't familiar, it's basically a mechanical treatment to clean the lids and freshen up the eyelids so that those glands work again. If you don't have a big problem with blepharitis, that is basically inflammation of the eyelid margin might not be for you, but in your particular case it may well work. Just like anything else, you're probably not gonna find any one thing that does the trick. And that's what makes it an art. You have to find which of these things is really the most active. Is this GVH causing symptoms for this patient by means of mucus production? Is it causing it by means of bad oil preservation of the tear film? So, you to find the patients where they are. There's no one treatment that's going to work for everybody.

00:51:52  Audience member with complicated case of ocular GVHD - treatment options: My husband is a poster child for everything you spoke about. Gratefully, he's a patient at Bascom Palmer. He sees Sotomayer and Donaldson. My question is, my husband has the gamut. The scleral lenses, the serum drops, all the other drops, the Lotemax, he has to have a test again for glaucoma. He had it once and she said she wants to do it one more time to diagnose with him or not. Is he eligible for the clinical trial?

00:52:34 [Tonk] Yeah, he may well be eligible. One of the issues is going to be that he may have to come off of the Lotemax, which he's on, to enroll in that trial. I can get you the contact information. They have all of the inclusion criteria. The problem is you can't wear a scleral lens and you can't be on steroid eye drops to enroll in the trial. So that's going to exclude people that have advanced. So, I think that the people that are probably going to benefit the most are folks that have mild to moderate graft-versus-host disease and are looking for an alternative to steroids eye drops, for example. If you're at the point that you're that far out, you're probably, doing best with steroid eye drops.

I know doctor Dr. Donaldson's a colleague of mine and she's great. I encourage you also to contemplate moving from serum tears to plasma rich and growth factors, which we discussed. The other steps in that treatment regimen, might also include optimizing some of the immunosuppression. I'm not sure if there's other graft-versus-host disease happening in the body, but that might be the moment where you say, if I'm at my max ... Look, we're going to have to tolerate some amount of symptoms. We understand. But the key is if it's beyond the point where it's affecting the activities of daily living, then we might have to go 

I tend only to reserve alterations to immunosuppression for patients that are having progressive sight threatening disease. So, we saw some of that scarring occur. Right? And we saw that scarring coming over the cornea surface with the perforation and the melting and the ulcerations. That's usually when I pick up the call to the transplant physician and say we need to do some more 

Now, when you're talking about that, you're referring to like he's on tacrolimus now, correct?

[audience] Correct. Correct. The doctor is going to start weaning off of that. He's on Jakafi now. Is that going to transition?

00:54:25 [Tonk] Yeah. Again, It's up to the transplant physician because he or she has the full picture. Right? But, as always, the ophthalmologist needs to put in a call to say, "I want to make sure that you're aware of what I'm seeing in the eyes and that I am close to maxed out in my local therapy. We may need to adjust some of the systemic treatment as well."

The problem is the systemic treatment or is limited by side effects. We know that. And the other big limitation to the systemic treatment is that we need honestly a little bit of this graft-versus-host activity to prevent and patients who've had a cancer to do immune surveillance and keep cells that might otherwise become a relapse of the cancer out of the circulation. So, there is a very complex challenge there, which, kind of have to go through a couple of hoops. It sounds like it's a tough case. There's no easy answer unfortunately, but I think those are the things that we can work out.

00:55:19 [audience]  I heard they were special eyeglasses? Do you know anything about that?

00:55:24  [Tonk] Well, can you elaborate glasses specifically for GVH or for dry eye?

There's a whole market out there to sell blue blocking eyeglasses or HD vision glasses and so forth. I don't particularly have any recommendations. Some patients find them helpful, some patients don't.

00:55:44 [audience] Comment about difficulty putting in scleral lenses: People who don't have scleral lenses. I have them. You got to realize that you are putting these hard lenses in something that looks like a golf tee and then you're putting saline solution in it and then you're trying to dip your eye in it and get them in. Then to get them out, you're basically taking a plunger. And what I've found is if you hit your eye a drop with that plunger, it's like you're hitting the ceiling. It is so painful and then I can't put the lenses in for another day.

00:56:18  [Tonk] there are some patients that, even after worked at it and having been trained and trying, they just, they simply can't make it work. And so, it might not work for the lifestyle. Right? Even if the lenses are in, forget about putting them in or out sometimes because of derangement in the tear film, as we discussed, the lenses can cloud over with debris that the eye makes, this mucus and so forth, and then they fog up and you're not seeing clearly. You've got to take them out. You got to clean them. Trust me, I've been there.

Now, I think I understand your question just a little bit better. I had a chef that I had a scleral lens, it wasn't working for his lifestyle. He them in and he was using, I showed the pan optics or the Harley Davidson glasses so you can find some different sealed eyeglasses online. Or for me, I like you go to the store, and the Harley Davidson store, honestly, is the most practical because you can try them on and fit them to your face. Take them, they're going to have a little sealed foam pad. So, he's a chef and he's in the kitchen and he's got steam coming up and hitting his eye. I mean, what can he do? He can't have the scleral lenses in. Life changing to where those glasses. So, thank you for making that point.

00:57:32  [Moderator] We unfortunately are out of official time for questions, but we do want to encourage you to thank you and I think all of these questions have given everyone in the room a little bit more insight. We want to thank Dr. Tonk for his time. We also wanted to highlight the brochures available, graft-versus-host disease at the BMT info net desk. They ask one per family. Thank you for your time Dr. Tonk.

00:57:59  Okay, thank you. Yeah. Yeah, I have a card.

00:58:04  Just a quick question. Just a point what he was just saying about the scleral lenses and the mucus coming over and say got to clean the lenses and stuff like that, is there anything you can do for that mucus that creates this ...

00:58:20  You know what I'm going to do? I love your question. I want to share it. Do we have enough of a small group here that you guys want to do another 15 minutes and hear everybody else's questions? Because otherwise I'm going to answer one off. Okay. So, let's do this. Maybe we'll just use these seats and will form up like a small-

00:58:37  For the clinical trial, that's the only thing, you said-

00:58:38  Yeah, I can-

00:58:39  That's the only thing.

00:58:41  Here, I'll give you my email address on my business card here and I've only got so many, unfortunately.

00:58:47  [inaudible 00:58:47] about the clinical trial.

00:58:48  Exactly, right. And then I'll put you in touch with the director of the trial. Thank you.

00:58:51  Thank you. You guys are awesome. So glad we're near you.

00:58:55  Your question was, again? I'm going to restate your question. I hope you don't mind.

00:58:58  Yeah. I was talking about pro lenses and scleral lenses. You know what I mean?

00:59:03  Yeah.

00:59:03  I have been wearing up a little while. I learned to get them in. It is what it is. But the film that I get from the mucus, it's just so hard? Because it makes it blurry. I can't read, I can't drive. I can't do anything-

And it just happens again and again.

I cleaned them all the time. He told me not to use Q-tip or whatever, but I can't see.

00:59:28  Yeah. So, the question is what do you do when you're a scleral lenses are fouling? The first thing, and it sounds like you've already hit this-

No, I know. I know. No, look, it's a real thing. It's a real problem. Scleral lenses are useful for a variety of different conditions. And so, we had a woman in the audience who received a cornea transplant. And for her, she doesn't have anything else going on, on the surface of the eye to cause inflammation so that scleral lens, she puts it and she sees great. She takes it out at the end of the day; done. And patients with inflammation, mucus production, blepharitis, disease of those Meibomian glands, the tear film is deranged. And as a result of that, the tears that your own body produces that are going to foul up your lens.

So, what are the strategies? There's no one perfect solution to it. The strategies first, just make sure that your contact lens person is on it and working with you through that and is aware of this problem. The second is to change the type of cleanser that you're using and try it a few different ones because those cleansers take out the protein as you clean them. So, you might have some protein left over and you might want to try out some different things that you're filling the lenses and that you're clearing the lenses with. The third is to get back, we had a gentleman in the audience who was talking about BlephEx, right? To get back to treatment of the glands and the eyelids because those-

01:00:55  I don't know what that is.

01:00:56  There's just a variety of different treatments. Honestly, it's not that worth getting into it. Start with the bread and butter, which is to say whoever's fitting you or your main ophthalmologists and saying "I'm having this fouling problem. Could it be related to the Meibomian glands?" The Meibomian glands, as we know if they are blocked, as happens in graft-versus-host, the oil that they produce is not olive oil. It's like a cheesy buttery thing and that can contribute to your problem. Not to mention just general dry eye. So, if we can open those glands up more, we tend to have a better tear film. We can open those glands at the very least by talking about warm compress massage twice daily, lid cleansing twice daily.

01:01:41  Meibomian gland disease: There's special medications, supplements like omega-3 fatty acids, fish oil, flaxseed oil, get those glands working for you and be deliberate. You brush your teeth twice a day, you should have an eye care regimen twice a day where you get those glands open and working. Look up on the Internet, dry eyes zone, even people who don't have graft-versus-host. Look up, MGD, Meibomian gland disease. You will see thousands of people who have that disease and nothing else that will tell you what works for them.

01:02:11  MGD. Meibomian gland disease. That is part of what graft-versus-host can affect, because those glands have inflammatory cells that enter them, scar them down and then they're not working. The don't produce the oil that they should. Yeah. How are you?

01:02:29  I have a question.

01:02:30  Yes.

01:02:30  The optic nerves swollen after his transplant. Is that part of GVHD or is that something else?

01:02:40  Yeah, it's hard to say it. Has it resolved?

01:02:48  He still has it. It may be a little bit better.

Yeah. Optometrist said it decreased. I went to a neuro-optometrist. He really didn't have anything ...

01:03:01  There's really not that much. To be frank, it's one of those things that, it's something that ... Is it affecting your vision in a substantial way?

01:03:08  I was pretty pre-cataract prior to the transplant. Now, I'm [inaudible 01:03:11]

01:03:13  Right. So, it sounds like the thing affecting your vision primarily is the cataract and that swelling of the optic disc was probably a transient thing that came, the disc swelled might've been as a result of some of the medications you were receiving, might've been the result of an acute graft-versus-host episode. It's hard to know exactly. I don't often see it in chronic graft-versus-host disease. If you've not been diagnosed with graft-versus-host disease or the eyes or elsewhere, I wouldn't say that if you came into me with that and nothing else, I wouldn't say that that was graft-versus-host disease. I would probably say that's an interesting finding and we'll watch it and it's probably not visually significant.

01:03:54  So, we live in Martin County, so we have [inaudible 01:03:56]

01:03:59  That's right. Yeah.

01:04:00  Is there somebody there that specializes in GVHD?

01:04:04  Yeah. So, my colleague, Guillermo [inaudible 01:04:07] goes up there once a month and he has a clinic where all he sees is ocular graft-versus-host disease. As far north as I go as Broward County to the plantation office. So, I'm about a good 45 minutes south of Palm Beach. But either one of us can see you there.

01:04:22  Okay. So, that's how he would be diagnosed if he had? Because his local doctor hasn't said that he's got that-

01:04:30  To be frank, I don't know if it much matters. Just between you and I. I don't know if it much matters. If you're not having symptoms then it becomes an academic point. And I showed you those slides about NIH and international consensus about ruling in and ruling it out. There's a lot of gray area and we as ophthalmologists, we go back and forth and as academics, we kind of just go back and forth as to what is and what isn't. But patients have dry eye from just having had cancer, chemotherapy, radiation medications, patients have dry eye. That doesn't mean GVH. And so yeah, from a psychological point of view, it helps to know that I do or don't have. But if you're in this gray area where you have occasional eye irritation and occasional light sensitivity, occasional redness, it's going to be hard for any ophthalmologist, specialized or otherwise to say this is what it is.

01:05:25  A retina specialist is probably going to be the least equipped person to say. The retina is the back of the eye and probably the least involved part of the eye in graft-versus-host disease. So, when we talk about ophthalmology, we have comprehensive ophthalmologists that bread and butter, what they're taken care of is dry eye, cataract, so on and so forth. Then you have specialties within ophthalmology. Just like everything else, you have a specialty within oncology that does transplant, right? So, within ophthalmology you have cornea, you have glaucoma, you have retina, you have pediatrics, and you have uveitis, inflammation side of the eye. You have a variety.

01:06:06  Within cornea, which is a broadly well known sub-specialty of ophthalmology, that's the person that you want to see, somebody who's trained in the surface of the eye. Within cornea, there's a smaller subset of people who have ocular surface training, who specifically deal with ocular surface disease. To be frank, just the way that eye care is set up in this country, many cornea specialists will keep busy with some other conditions, be it refractive surgery, right? Lasik, PRK, those types of surgeries, cornea transplants for non-inflamed eyes. Cataract surgery for a variety of different things. So, it becomes tough to find a cornea specialist who has been fully immersed in this subset of cornea that is graft-versus-host. So, what you need is somebody that does ocular surface disease.

01:07:06  So, if you type in ocular surface disease and you look up your academic center, that's what you want. And that frankly, probably do not need to see that person unless you're up on this ladder somewhere. As a screening, you probably don't need to see that person. I say that to save your time. And I say that also to make sure that all of those spots are open to patients that need to get in and need to be seen because what happens is that the people that do, do it, the clinics just get booked out for months and months and you're seeing just way too many patients a day to give justice to the condition as complicated as it is.

01:07:53  So, your screening optometrist, you need a local eye partner, a comprehensive ophthalmologist or optometrist who cares and who is good and who recognizes their limitations. That's all you need. That person is capable of doing screening because again, it's an academic point to say you have GVH or not. And what I would do is I would then take a one time trip, either once a year or just one time altogether, to the local academic center that has a specialist that sees this. Check in, make sure your eyes are good, and then have routine care with your local partner. That way if things get bad, you can always have a communication and go back.


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