Your Eyes and Chronic Graft-versus-Host Disease
Sunday, April 18, 2021
Presenter: Amy Lin, MD, John Moran Eye Center, University of Utah
Presentation is 29 minutes, plus 30 minutes of Q & A
Summary: Graft-versus-Host Disease of the eyes can be mild or severe. This presentation describes the causes and consequences GVHD in the eyes. It also describes and recommends numerous remedies for treating this condition.
- Dry eyes are the most common form of GVHD in the eyes.
- Mild cases of GVHD in the eyes can by treated with over-the-counter remedies while more serious cases require prescription treatments.
- More serious cases of GVHD of the eyes should be evaluated and regularly monitored by eye doctors who are familiar with the disease and its treatments.
(02:43) Dry eyes from GVHD is more severe than common dry eyes and can lead to corneal abrasions.
(03:37) Blood vessels can grow into the cornea, cause chronic inflammation and may permanently harm vision.
(04:10) Thinning or perforation of the cornea can be a serious complication of GVHD of the eyes and requires emergency treatment.
(05:10) GVHD of the eyes occurs in roughly 50% of patients with transplant from donor cells.
(05:42) Symptoms of GVHD in the eyes can include dryness, redness, excess tears, burning, itching, blurriness and excess blinking.
(08:23) New and additive treatments for GVHD of the eyes are available.
(09:25) There are a number of conservative treatments for GVHD of the eyes that can be used without a doctor.
(12:57) Artificial tears for GVHD of the eyes that specify “good for dry eye” are goo to use. Those that say “gets the red out” should not be used.
(18:10) Prescription steroid eye drops and more advanced treatments for GVHD of the eyes require physician monitoring.
(25:3 Since people differ in their responses, it may require persistence to find the right doctor and remedies to effectively treat GVHD of the eyes.
Note: In this presentation the speaker(s) sometimes uses the terms “BMT” or ”bone marrow transplant”. For purposes of this presentation, both of those terms also apply to patients who have been through a stem cell transplant.
(00:01) [Thom Stewart] Introduction
Hi, I'm Thom Stewart, and I will be your moderator for this afternoon's session. I'd like to welcome you to the workshop, Your Eyes and Chronic Graft-versus-Host Disease.
It's my pleasure to introduce our speaker, Dr. Amy Lin. Dr. Lin is an Associate Professor in Ophthalmology at the John A. Moran Eye Center at the University of Utah. She is also a staff physician at Primary Children's Hospital in Salt Lake City, and at the Salt Lake City VA hospital.
Dr. Lin specializes in the medical and surgical treatment of corneal and anterior segment diseases. Her research focuses on ocular surface diseases, including dry eyes and treatments for ocular GVHD. Please welcome Dr. Lin.
(00:56) [Amy Lin] Overview of talk. Thank you so much. I'd like to thank the organizers for putting together this event and inviting me to come speak to you guys virtually. So, we'll get started here.
So, I'm talking about Your eyes and Chronic Graft-verus-host Disease. And I'm going to go over these main points here in the outline. How does graft-verus-host disease affect the eyes? What are some of the risk factors for developing the manifestation of this disease?
The bulk of my talk will concentrate on possible treatments for eye conditions related to graft-verus-host disease. And then, lastly, I'll go over how you can make sure your eyes are taken care of, and how you can find a qualified eye provider.
(01:46) Primary problem caused by GVHD in the eyes is dry eyes. So, the primary eye disease that we see in chronic graft-verus-host disease is dry eyes. And what happens is, the body's white blood cells actually attack the glands that are responsible for producing tears, and this leads to tears that are abnormal.
So, instead of being soothing to the eyes, the natural tears can actually have pro-inflammatory mediators within the tears. And that could actually lead to damage at the surface of the eyes.
But not only that, there's actually less volume of tears that are produced in eyes with GVHD. So, not only are there tears that are abnormal, there are a lot less tears than what should be there. And so, that combination leads to a dry eye that tends to be a lot more severe than what I'm calling "everyday" dry eye.
(02:43) Dry eyes from GVHD is more severe than common dry eyes and can lead to corneal abrasions. So, dry eye in general, is something that's actually very common. That for most people, it's actually not associated with GVHD. So, for people who don't have GVHD, they can commonly have dry eyes. But the dry eyes that we see with GVHD tend to be more severe than that.
So, besides the dry eyes that I described, there are more serious forms of GVHD in the eyes, so it can actually lead to abrasions on the cornea, corneal abrasions that don't heal well.
The cornea is the front clear window of the eye. And if there's any abrasion on it, with GVHD, that actually does not heal over very well. And that can lead to a chronic abrasion on the eye, which is not a normal condition.
(03:37) Blood vessels cause chronic inflammation and may permanently harm vision. Blood vessels can actually grow into the cornea. So, like I mentioned, the cornea is the clear front window of the eye. It's not supposed to have any blood vessels. So, when blood vessels start growing in the cornea, it means that there's chronic inflammation on the cornea.
And the cornea is actually screaming for help asking for blood, to get more blood supply to the cornea. But the problem is, that blood is... those blood vessels aren't supposed to be there. And so, blood vessels, if they grow severe enough, they can actually permanently cause a change and decrease in vision.
(04:10) Corneal thinning/perforation is major complication of GVHD. In very severe circumstances, GVHD can actually lead to thinning or perforation, a hole in the cornea. And this is a medical emergency, and we really don't want this to happen. This is the final, one of the final, dreaded complications of severe GVHD in the eyes.
(04:35) Treatments to prevent severe effects from GVHD in the eyes.
So, to prevent the eyes to get to that point, the eyes need to be treated before the disease gets to a very severe stage for the best long-term outcomes. And this can be treated by both the treatments I'll be discussing, the treatments I'll be recommending as an ophthalmologist, as an eye doctor. But what I found that also can be helpful is, if the GVHD in the whole body is treated by the hematologist-oncologist, that can actually help dry eyes that we see with GVHD as well.
(05:10) [ How often does GVHD happen in the eyes? There is a very wide percentage that is published in the literature from 30% to 85% within three years of a bone marrow transplant from donor cells. In my practice, I found that, I would say at least 50% of these patients with GVHD probably developed dry eyes. But it's not 100%, but it's a really pretty good percentage.
So, what are some dry eye symptoms that we see with GVHD?
(05:42) Symptoms of GVHD in the eyes: So, there's a whole variety of symptoms which I'll go over actually in the next two slides. So, your eyes can feel dry. They could get red.
They could actually tear which seems very counterintuitive. But what happens is, when the eyes get extremely dry, they get to the point where the eyes get so dry, that hey think that there's something in the eye. And basically, the eyes actually have reflex tearing to try and flush something out of the eyes, but there's actually really nothing there. So, that reflex tearing could actually be a sign of dry eyes.
(06:16) Burning, itching, blurriness, blinking may be symptoms of GVHD in the eyes. Other common symptoms are burning of the eyes, or feeling like there's sand or other material in the eyes. But there's other dry symptoms as well.
Itching could be a sign of dry eyes. Blurry vision that changes throughout the course of the day. Or blinking is also something that's very common with dry eyes. So, if you notice that your vision is sometimes okay, and then sometimes it gets worse, during the course of the day, or just blinking, that's something that we see commonly.
(06:49) Symptoms of GVHD in the eyes can worsen later in the day. Also, if any of these dry eye symptoms are worse later in the day, or when you're reading, or at the computer, or watching TV, that's actually really common. What happens is, when your eyes are open longer and longer during the day, they're actually drying out more and more. So, if your symptoms are getting worse later in the day, that's actually something very common that we see with dry eyes.
The other thing is, when people are concentrating on something, whether that's reading something at a computer or reading an actual paper book, or watching TV, if you're concentrating, you blink a lot less frequently than you normally would. And they've done studies, they found that people actually blink a third of the time. So, if you already have dry eyes, and then you're staring without you realizing it, that's actually going to make dry eyes worse as well. And so, I'll go over what you can do to help your dry eye symptoms later in the day.
(07:51) Risk factors for GVHD in the eyes. So, what are some risk factors for GVHD in the eyes?
Having a prior acute GVHD events puts people at higher risk for developing it in the eyes. There've been papers that have been published showing that use of peripheral blood stem cells rather than bone marrow or cord blood can actually increase the risk of dry GVHD in the eyes. Also, interestingly, bone marrow transplants from female donors to male recipients could also increase GVHD in the eyes.
(08:23) Many treatments are available to treat dry eyes caused by GVHD. Dry eye is a chronic disease. It's something that never goes away, unfortunately. However, there are many, many treatments that are available to help manage symptoms
(08:34) And treatments often have an additive effect. Meaning, if I'm recommending a treatment, and then later on, I want to add another treatment, it's again, it's additive. We add another treatment while you're still using the treatment that you've been doing.
So, some patients switch from one to the other. But sometimes I actually want to add things together, because together, multiple treatments can help more than any one treatment by itself.
New treatments are always coming out in dry eye, and that's the really exciting thing. If there's not something that's available now, there's plenty that's in the pipeline as far as new prescription medications and other treatments that are being researched to help people with dry eyes. And of course, that means GVHD in the eye.
(09:25) 20-20-20 rule for dry eyes. I'm going to start with some, we'll call conservative treatments, things that don't require seeing a doctor to help with dry eyes.
So, there's something called the 20-20-20 rule. This means when you're at the computer, if you can, every 20 minutes, take a break for 20 seconds, and look at least 20 feet away from you. So, that's the original 20-20-20 rule. I actually have a little bit of a modification. So, my modification is, okay, every 20 minutes, take a break for 20 seconds. But I actually prefer having you close your eyes real tight for 20 seconds. And if you count slowly one to 20 with your eyes shut really tight, that can actually help your eyes get re-moisturized. Again, you can do this right now. You can do this without having to go out and buy anything. So, that's something that's really simple.
(10:18) Trying to limit your screen time is also really helpful for people with dry eyes. Like I said earlier, the longer you're at the computer, the more you're staring, the more your eyes are drying out. So, if you could at all, maybe lessen or minimize your screen time, that can help your eyes out a lot.
(10:33) If you’re dehydrated, drinking more water may help with dry eyes. Some of my patients asked me about, does drinking more water help? And I think that it can. However, I think it only works if you're already at a dehydrated state. So, if you're dehydrated, sure, you might get an increase in dry eyes. And so, drinking more water can help. But if you're already pretty well hydrated, drinking more water doesn't hydrate your eyes anymore.
So, just keep that in mind. Keep yourself hydrated, but you don't need to over hydrate yourself.
(11:04) Soft contact lenses can worsen dry eyes. If you wear soft contact lenses, soft contact lenses can actually worsen dry eyes. So, trying to minimize the number of hours you're wearing soft contact lenses can help, or even not using them altogether as possible can be helpful for dry eyes. Some of other conservative treatments, increasing the humidity locally in your house, in your room, using a humidifier.
(11:30) Moisture chamber goggles can help dry eyes. There's actually something called moisture chamber goggles, which actually fit around your eyes. Goggles, almost like foam goggles, but maybe not quite so tight. But what that does is, it helps keep out the air that's right around your eyes. It prevents them from drying out. So, it actually helps a lot with dry eyes. And there are night-time and day-time forms of moisture chamber goggles. The night-time ones are ones that block all the light. So, wear them when you go to bed.
I put down a couple brands there. One's called TranquilEyes, another one called Eyeseals. There are several brands out there. These are two that some of my patients have told me have been helpful. And you can find them online. I haven't found them in actual stores. But you can try online or Amazon.
During the day, there's actually moisture chamber goggles that are actually a clear lens that you can actually look through, and they can be stylish. They can look like sporty glasses or sunglasses. Many brands are out there. And here are two of them, 7Eye, or actually, that's YVX, are two brands that are out there. And I believe some of them can actually be fit with your own prescription. So, if you’ve got a prescription for glasses, you can actually get a frame that has your prescription in it, which is pretty exciting.
(12:57) Avoid eye drops that say “get the red out”. Next, we'll go into artificial tears. So, there's lots of drops that you can find on the aisles at the drugstore.
So, I would definitely get a drop that says, "It's good for dry eye". Avoid drops that say"get the red out". And there's tons of drops, unfortunately, that do say that, to "get the red out". Generally, those drops are not recommended because the chemical compound within those "get the red out" drops actually constrict the blood vessels in the eyes. And what happens is that, if you keep doing it every day, or multiple times a day, when you stop the drop, your eyes actually have this rebound violation, meaning, your eyes actually have more prominent blood vessels, and had you not even started the eye drop, your eyes could actually look redder than they would have been. So, we don't recommend drops that "get the red out".
However, there's one exception, a drug called Lumify. It is available over the counter. And this is a drop that can whiten your eyes, but it doesn't have that rebound effect of having your eyes be redder when you stop using it.
So, Lumify is one that you could use, if you're in a pinch, and you need to use something.
(14:09) Artificial tears that are good for dry eye. But generally, I recommend drops that are good for dry eye. So, there are two different forms. There are bottled artificial tears and preservative-free artificial tears. So, the bottled artificial tears, they come in a single bottle. They are convenient because you can just carry them around in your pocket, in your purse.
However, those bottles have a preservative built in there. If you use it very frequently, as in more than four times a day, what happens is, the preservative that's in the bottle can actually start to irritate your eyes and make them more irritated. So, if you're using bottled artificial tears, I would say, don't use them more than four times a day.
If you have a need to use artificial tears more than four times a day, I would highly recommend switching to what are called preservative-free artificial tears. I've got a picture of what they look like. They come in little vials that are preservative-free. And the great thing about them is, there's no limit on how many times a day you can use these. 10 times a day, 20 times a day, whatever, because there's no preservative. But because they are packaged in little individual vials, they’re maybe not quite as easy to transport around, but those are more gentle on the surface of the eyes. So, I highly recommend the use of preservative free ones.
(15:29) Thicker artificial tear gels and ointments for dry eyes. There are some thicker options of artificial tears. The thicker drops are called gel drops. They stay on the eyes longer, but they cause your vision to be a bit more blurry. So, they're nice in that they last longer, but you just have to be mindful not to put them in and expect to do some visually demanding task.
There is a gel drop that is preservative free called Refresh Celluvisc, what I have there, and it's also in the picture, in the top right corner.
At night, you can actually use something even thicker than a gel drop. There's gel which is thicker, ointments that are even thicker than gels. And these come in little tubes that I have on the bottom left and bottom right corners [of the screen]. Couple brands there. There's GenTeal Gel and Refresh P.M. Ointment. Again, there are other brands out there. These are just two examples.
But these are nice because they last all night, and they can help with dry eyes during the night.
(16:33) Omega-3 fatty acids can help dry eyes. There is some evidence that actually, some oral supplementation of omega-3 fatty acids is helpful for dry eyes. So, omega-3 fatty acids are necessary for the lacrimal gland, which is the main gland in your eyes, to create tears. And oral supplements can be helpful.
There are few forms of omega-3 fatty acids: there's fish oil, krill oil, and flax seed oil. I’ve found that the fish oil and krill oil forms are more beneficial for dry eyes. And there's actually a big study that came out a few years ago called the DREAM Study which stands for Dry Eye Management, sorry, Dry Eye Assessment Management study, that was performed in about 500 patients where they actually looked at the benefits of oral fish oil. So, 3,000 milligrams of oral fish oil versus a placebo, and their placebo happened to be a teaspoon of olive oil.
We had these patients use their own, whatever treatments that they were already on for dry eye, they let the patients keep using that. And the interesting finding was, they found that both treatments, meaning, fish oil and olive oil improved dry eye symptoms by the same amount. So, fish oil helps. But interestingly, having a teaspoon of olive oil in your diet also helps. So, just having olive oil in your diet can be helpful.
If you want to spend the money on good quality fish oil, that's also helpful as well. But I've been telling patients that just simple olive oil is helpful.
(18:10) Use of prescription steroid eye drops needs to be monitored by a physician, due to possible side effects. There are prescription steroid eye drops that can be useful for decreasing inflammation on the surface of the eye that can help with dry eye symptoms. These drops do need to be monitored under the care of an eye doctor.
So, there are potential side effects with long term use of steroid eye drops such as worsening cataracts, cataracts progressing at a faster rate than normal or increased eye pressure, which can lead to a condition called glaucoma.
And glaucoma is an eye disease where you can actually lose your sight vision very slowly over time. And so, it's important that if anybody is on steroid eye drops, [they should] be periodically seen by an eye doctor to check for these things. If you're on steroid eye drops, and you're not under the care of any eye doctor, I would highly recommend finding someone. And I'll go over it at the end of the talk, how to find a great eye care provider.
(19:07) Prescription drops for dry eyes. There are prescription drops that are specific for dry eyes. There are three listed here, Restasis, Xiidra, and Cequa. And these are drops that, again, I would highly recommend having prescribed by an eye doctor because they can monitor how the treatments are working for you. Not all treatments work in everybody. And the nice thing about these drops is, all three of these are safe for long term use. So, once you start this drop, any of these drops, they can be used for long term.
(19:43) Punctual plugs can help with dry eyes. Next, I'll go over something called punctal plugs which are tiny devices that are placed in the tear drainage system of the eye. And that's located in the inner corners of the eyelids. I'll show the picture in the next slide. But these plugs actually help your eye keep your own tears for longer on the surface of your eyes. And it's also nice because any eye drops you put in your eyes, if you've got these plugs in, they actually help keep those eye drops on your eye longer.
These plugs are placed in the office of an eye doctor, very simply and easily, it takes about a minute to do. There are no needles. There's no blood. This is something that's very, very simple that can be done.
And I'll show you a picture of what they look like. So, they're really tiny. So, in the inner corner of the eyelid is the tear drainage system for the eye. And there's a tiny hole in the lower eyelid and a tiny hole in the upper eyelid.
What I typically do is put this plug, which is looks like this white mushroom cap, and it sits right in the lower eyelid little drainage hole. And that keeps your eye having more tears for longer. Plugs can also be placed in the upper tear drainage system, but I typically start with the lower ones first. And as the upper ones need to be placed, I will place them in later.
(21:03) Serum tears from patient’s blood to treat dry eyes. Another very different treatment, actually, is called serum tears. And these are very different treatments because they're actually made from your own blood.
So, what happens is that your blood gets drawn, it gets spun down, and filtered off of all the cells. And all that's left is serum, which is a clearish, yellowish fluid that gets mixed with sterile saline and it's packaged in a little eyedropper bottles. So, your own serum actually contains growth factors, vitamins to assist with healing dry eyes.
Typically, we have people use them four times a day. Because they are your own body product, you're not going to have a reaction to it. So, that's a nice thing. But it does need to be kept cold, because there's no preservative in this, and it could get contaminated. So, the bottle needs to be kept in the refrigerator or, if you're out and about, putting it in an ice cooler with an ice pack. And one bottle is good for typically one week.
You can keep a supply that's actually frozen for up to six months, and you can thaw out the bottle as you need it. Because there's glucose in your own body serum, there's a small risk of eye infection. And so, you want to be mindful that you don't let this go to room temperature or warmer because it can be contaminated.
And serum tears, there's different ways of getting them. Here at my home institution of Moran Eye Center, we have a setup where we do have a nurse drawing blood and it gets processed at our eye bank.
At other institutions, other universities or other private practices, they may be different. Some doctor's offices will actually make their own serum tears right on site in the office. Or sometimes, they could actually write you a prescription, you get your blood drawn in an outside lab, and then, you take that lab to a compounding pharmacy to have them get made into serum tears. And there are actually, I think one or two companies out there that are working with doctors to help make serum tears happen. So, it does involve a process. It's something to ask your eye doctor about if that is something that is possible for you.
(23:10) Scleral contact lenses can help with dry eyesif other treatments fail. Next is a treatment called scleral contact lenses. So, scleral lenses are a very, very different treatment for dry eyes. Typically, it's something I recommend once several other treatments have failed. A scleral lens is a larger diameter, rigid - so it's a hard gas permeable contact lens. And the picture shows an eye that has a scleral contact lens in there, see.
You can barely see there's a little line around the eye where the contact lens is. And what happens is, this scleral lens actually looks like a miniature little bowl and you fill it up with sterile saline. There's a way to put this contact lens in your eyes so the saline actually stays right on the surface of your eye all day while the contact lens is in. And this is the only type of contact lens that helps dry eyes.
I mentioned earlier, soft contact lenses typically make dry eyes worse. The scleral contact lens actually helps dry eye, has a lower infection risk than soft contact lenses. This is a lens that has to be taken out and sterilized every day. And a lot of my patients have a vast improvement in pain, sensitivity to light, and irritation. These lenses need a specialized contact lens fitter for this. It Is not something you can go to, typically, just any old contact lens fitter to get, because it's very highly specialized.
So, you need to find a specialized contact lens fitter. And typically, they could be affiliated with universities. And so, that's something to ask your regular eye doctor about if they know anyone who fits people with scleral contact lenses.
(24:52) Bandage contact lenses are for patients with corneal abrasions that are not healing. I wanted to put in a word about something called bandage contact lenses. So, it's a soft contact lenses but they're only for patients with corneal abrasions that aren't healing.
And it's a soft contact lens that's worn 24/7, only for temporary use. It's something that's inserted by the eye doctor into the patient. And it needs to be monitored by an eye doctor for infections. So, soft contact lenses, like I said, they make dry eyes worse. But in certain instances, they can be used to help with healing the surface of the eye if there's a corneal abrasion that isn't healing very well.
(25:28) Every patient with dry eyes needs a customized treatment plan. So, I mentioned a lot of different treatments. There are a lot of other treatments that I didn't quite have time for. But every patient that I have with dry eyes has a customized regimen for them.
So, there are different combinations of treatments that can be put together. It's going to depend on how severe the dry eyes are, how much insurance coverage there is for the different treatments. Like I mentioned, there are prescription drops. The prescription coverage on it varies depending on insurance plan. So, that could unfortunately dictate the way I manage what treatments go with which patients.
And not every treatment works on everyone. So, if we try treatment, and it doesn't work, don't despair. What I do is, I go try the next thing, try something else. My goal is to find the right combination of dry eye treatments that will work for each and every one of my patients.
(26:26) So, what can you do now to help with your eyes? So, I mentioned some of these earlier.
You could use a humidifier. So, if you've got a humidifier somewhere in your house, that can be really helpful to turn on to help with your dry eyes.
I had mentioned moisture chamber goggles, which you can find, but even just getting some simple wraparound sunglasses at the drug store are actually helpful in cutting down on the light, and protecting your eyes from wind and dust.
I mentioned limiting screen time is also really helpful for minimizing dry eyes.
Having something as simple as olive oil in your diet, a teaspoon worth in your diet per day, can help with dry eyes.
And I mentioned other simple things like artificial tears that you buy over-the-counter can help with dry eyes as well.
(27:17) How to find a doctor that specializes in dry eyes. How do I take care of my eyes? So, you want to get an eye exam with an eye doctor who specializes in dry eyes. So, I'm an ophthalmologist. I'm specifically a cornea specialist. And so, cornea specialists are specialized eye doctors who have a keen interest in dry eyes.
But there are general ophthalmologist, general eye doctors who can also treat dry eyes as well. The BMT InfoNet also has an online directory of specialists who are very well-versed in treating dry eyes.
If you do see an eye doctor, you want to follow their treatment recommendations. You really need to be patient. There's not an overnight fix. There's not going to be one thing that you'll do one time and be able to cure your dry eyes, unfortunately. Oftentimes, dry eyes do require a lot of care every day, multiple times a day to really help with dry eye symptoms.
(28:19) Resources for patients with dry eyes on the internet.
Some other resources, there is a general website called The Dry Eye Zone. This is not particularly, really specific for GVHD patients, but it's got a lot of information for people with dry eyes in general. There are discussion forums. There's a Facebook page as well. So, it's a good resource to start.
Also, the BMT InfoNet also has a Graft-verus-host Disease: What to Know, What to Do booklet that you can order, and the phone number to order is on there.
But that's basically my entire talk. I wanted to spend the rest of the time on discussion and questions. But thank you so much for your attention. I'd be happy to take any questions at this time.
(29:10) [Thom Stewart] Q & A session.
Well, thank you, Dr. Lin, for this excellent presentation. We will now take questions. As a reminder, if you have a question, please type it into the chat box on the lower left-hand corner of your screen.
(29:23) And the first question is, does graft-versus-host disease always affect both eyes? I've been diagnosed with having it in one eye only. Moderate to severe treatment has been to that eye only.
(29:38) [Am Lin] Yeah, that's a great question. I would say in most cases, graft-verus-host disease does affect both eyes, but I have definitely seen it affect just one eye and even just with people with regular dry eyes. I've also seen it affect one eye. It's not quite as common. But it definitely can occur in just one eye.
My theory is, maybe the reason why that could be happening is that, if you sleep on one side of your face, that eye that's in the pillow could be partially open while you're sleeping and that can lead to more dryness. So, that could be a theory for why the eye disease can be very asymmetric. That's something that's possible.
(30:24) [Thom Stewart] Okay. Are all ophthalmologists well versed in dry eye related to GVHD? Will they be able to diagnose it through a general exam?
(30:34) [Amy Lin] Yeah. Well, in general, any eye doctor will be able to diagnose dry eyes. Not every ophthalmologist may be well versed in all of the different treatments available for dry eyes.
So, if your ophthalmologist is very comfortable, they should be able to treat you and know. But if they realize that this GVHD dry eye maybe beyond what they are typically comfortable with, they should be able to know a colleague in the area that may be more well versed with dry eyes with GVHD. Or you could also look at the BMT specialty directory for an eye care specialist in your area, who is very comfortable with seeing patients with GVHD in the eyes.
(31:29) [Thom Stewart] So, does dry eye go away when GVHD goes away?
(31:35) [Amy Lin] Good question. In my experience, I found that it gets better, but it definitely does not go away. Because there are some permanent changes that happen in the eyes in a lot of cases, in people with GVHD affecting the eyes. So, it can get better, but I have not found it to go completely away. That being said, I'll have the occasional patient every once in a blue moon, where they say that their eyes have gotten so much better. Now, they don't have GVHD. But that's not been the majority of what I've seen in my patients.
(32:15) [Thom Stewart] Another question that came through is, can moisture chamber goggles be used with a CPAP mask?
(32:24) [Amy Lin] Yes. I believe the Eyeseals brand of moisture chamber goggle is better for use with the CPAP mask. I know that the CPAP mask, they can tend to be bulky around the nose. And that could interfere with the way these moisture chamber goggles fit. But I think the Eyeseal one is maybe perhaps better for people with the CPAP mask.
(32:51) [Thom Stewart] Okay. I have tried lots of different over the counter preservative-free lubricants. Only one works and is comfortable. I assume everyone else's eyes are different. Do you advise trying different brands and formulations until you find one that works best for you?
(33:10) [Amy Lin] Yeah. I mean, I would recommend that. So, patients often ask, "What's the best one because I want to get the best artificial tear." And I mean, I can recommend some brands that are helpful. But honestly, everybody's different. Some people actually might not like a particular great brand of preserver for your artificial tear because it stings. I mean, there's always that reaction that could be possible.
So, yeah, if you found an artificial tear, and there's only one brand that works great, and unfortunately, that brand is not going to be one that someone else is going to like. So, I tell people to keep trying.
Systane and Refresh are probably the two most common popular brands of artificial tears that make really good quality preservative-free artificial tears. And within those two large brands, they make several different sub brands or subcategories of preservative-free artificial tears.
So, unfortunately, it's going to mean trying different ones and see what you like. And once you have find something that you like, I would stick with it. But also ask your eye doctor, like, "Hey, have you heard of any other brands of artificial tears that are really helpful for me?" Because there's always, literally, many several times a year, there's a new form of artificial tear that comes out. And I mentioned it to my patients, and they try it out. If I've got a sample, I give it to them. And they can try it out and see what works for them.
(34:45) [Thom Stewart] Have there been studies to determine if eye drops are prescribed after transplant to prevent ocular GVHD?
(34:57) [Amy Lin] I haven't found if there's anything that prevents it. I do know that steroid eye drops, and some of the other prescription eye drops can manage the symptoms. But I don't think there's anything that has made it not happen, definitively. There are some patients who do get very severe dry eyes, but there are other patients who have graft-versus-host disease and they don't get any dry symptoms. And I don't know why certain patients may get it and some may not.
I mean, I mentioned a few risk factors earlier in my PowerPoint, but I have plenty of patients who may not have had any of the published risk factors, who have severe dry eyes. So, I haven't found a way to prevent it from happening. Unfortunately, I would just recommend being mindful of your symptoms, making sure you see an eye doctor who is comfortable with treating GVHD in the eyes, and following whatever treatment recommendations they would recommend.
(36:01) [Thom Stewart] Thank you. A listener wants to know, "How long is too long to be on the computer each day?"
(36:09) [Amy Lin] Everyone's different. The reason why it's so variable is that it depends on how bad your dry eyes are. Some patients with very, very mild symptoms, they can go eight hours straight and be fine, or even longer. Some of my patients with very severe dry eyes, they're on the computer for 10 minutes, and they can't even tolerate any more than that. So, is there a point where I would say it's too much? I can't really answer that, because that depends on your own personal symptoms that you have with dry eye.
If you're able to be on the computer for a long time, and have fairly minimal symptoms, I'd say that's fine. You can take a break every so often if you need it. If you are very, very symptomatic, then that means that you should really, really limit your screen time to maybe just a couple minutes here and there. And it really depends on your comfort level while you're at the computer.
(37:12) [Thom Stewart] This questioner asked, "I had a BMT a year ago. When does GVHD usually occur in the eyes? Is this something I need to monitor indefinitely?"
(37:24) [Amy Lin] In most cases, if it's going to happen, it's going to be within three years. And I would say in my experience, in most cases, it probably happens within 18 months. But in the literature, it has popped up within three years of having GVHD.
(37:45) [Thom Stewart] How does serum tears treatment made from blood that is produced from stem cells of a patient's donor work with eye tissue of the patient which doesn't completely match the DNA of the new blood source?
(37:59) [Amy Lin] So, the serum tears that I mentioned earlier, I'm not sure if I understood the question, but bear with me here. So, I'm just looking at the chat box here. So, serum tears are actually made from your own blood. So, it's not from the donor at all. It's from your own blood. So, you're getting... it's like an auto transplant because that's your own blood that you're putting on your own body. So, there's no DNA mixture. It's your own blood product.
So, we don't have to worry about rejection or anything like that, if that's the question. So, these serum tears are not made from the donor. They're made from your own blood. And your own serum tears should only be used for yourself. Please don't use serum tears that's from anybody else. Don't let anyone else use your serum tears. They're really made for your own personal use.
(39:04) [Thom Stewart] Another question here is, "What is the benefit of prescription tears over Refresh artificial tears?"
(39:11) [Amy Lin] Yeah. So, the prescription tears, actually, they have actual chemical compounds that decrease inflammation in the eyes. And what that does is increase tear production, and it helps heal the surface of the eyes. And so, regular artificial tears are purely just for moisture, which work really, really well. But the prescription eye drops have the addition of a chemical compound that actually decreases inflammation. And the ones that are specific for dry eyes are usually a chemical compound that's not a steroid. And that's important because the prescription eye drops are meant for long term use.
Like I mentioned with steroid eye drops, those are also prescription. But I'd typically either put them only for temporary use, or the patients that I have on long term use the steroid eye drops, I'm monitoring them to make sure they're not developing any of the side effects like cataracts or glaucoma.
And so, that's the difference between prescription drops and artificial tears. Prescription eye drops have an additional compound that decreases inflammation.
(40:29) [Thom Stewart] I'm going to paraphrase this question a little bit, because I think I can give it more meaning this way. How do you tell the difference between non GVHD dry eye and GVHD dry eye?
(40:45) [Amy Lin] Good question. Well, it's going to be the same except I have found that patients with GVHD dry eye it’s a lot more severe with a lot more inflammation, more redness. So, that's the difference. It tends to be a bit more severe. But that being said, if you lined up a whole bunch of patients with dry eyes, and didn't tell me who had GVH, I may not be able to tell, especially if someone with GVHD has mild dry eye symptoms and exam findings. There's not really, there's not a very, very specific way to tell. But I found that patients with GVHD have more severe dry eyes.
(41:33) [Thom Stewart] Are optometrists qualified to treat dry eye disease?
(41:39) [Amy Lin] Some of them can. It really depends, unfortunately, on their own comfort level and their own level of training. So, a lot of optometrists are more well versed in things like contact lenses and glasses and very routine eye care, which is great. Some of them actually may see a lot of dry eye patients.
For example, there are a couple optometrists that I know of that are actually dry eye experts, and they're really good at what they do. I don't think that's the vast majority of all optometrists.
So, if you have an optometrist, and you have dry eyes, and they're treating you, if their level of comfort seems good, I would stick with them. If they seem like they're not really knowing what to do with you or they haven't seen anyone like you, I would find somebody else who actually is more experienced in dry eyes.
(42:42) [Thom Stewart] Here's a question about swimming. "Can you swim in the ocean or pool with GVHD?"
(42:51) [Amy Lin] With GVHD in the eyes, I would wear goggles, because any chlorine or seawater is going to irritate more. So, that's what I would recommend. If you are going to swim, just wear goggles, make sure you're not getting water in your eyes. Because people with GVHD in the eyes, they tend to have a lot more sensitive eyes. And so, any foreign material, I'm talking chlorine, or salt water, is going to be way more irritating than for someone without any GVHD in their eyes.
(43:27) [Thom Stewart] Okay. Another question from a questioner wants to know, "My eyes are dry and don't tear, but my nose constantly runs? Could that be a symptom of dry eye?"
(43:43) [Amy Lin] I don't know if I can answer that question directly. But I do know that any tears that you create do run into the nose. So, I don't know if your runny nose is because all your tears are just draining faster into your nose, or if you've got an additional issue going on with your nose causing your nose to create more mucus. So, runny nose is typically not a dry eye symptom. So, I really can't answer that. I don't know if I can answer that in its entirety.
(44:21) [Thom Stewart] All right. Does prednisone aggravate dry eye?
(44:27) [Amy Lin] So, prednisone, meaning the oral form of the steroid. It should not aggravate dry eye. If anything, it probably can make it a bit better, just because it is anti-inflammatory treatment in the whole body, and so, it is going to get in the eyes. So, I would say it might make things better. It may not do anything, but it shouldn't make it worse.
(44:57) [Thom Stewart] Will untreated dry eye related to GVHD develop into the cornea degeneration you spoke about?
(45:05) [Amy Lin] If it's severe. So, that's reserved for people with very severe dry eye that could lead to those really bad complications. And so, if you're asking, "Well, how do I know if I have this complication?" Well, you're not going to know until you see an eye doctor. If you have mild symptoms, you're not going to be getting those really severe complications. But if you have very severe symptoms, meaning, you've got constant disabling eye pain, irritation, or your vision is constantly blurry from your dry eyes, you may be at a higher risk for developing bad complications.
So, just making sure you're seeing an eye doctor where they're checking your eyes and making sure everything's okay, and you're on the proper treatment. That's what I would recommend.
(45:50) [Thom Stewart] When should someone ask for prescription tears instead of just continuing to use Refresh artificial tears?
(45:58) [Amy Lin] If the Refresh artificial tears are not helping your dry eye symptoms enough, then I would explore some of these other treatments that I mentioned, such as the prescription eye drops, or the punctal plugs, meaning, a little plug to your drainage system. Or some of the more specialized eye drops that I mentioned, like the serum tears and scleral contact lens.
(46:23) [Thom Stewart] Does your eyesight change with GVHD of the eye?
(46:29) [Amy Lin] Eyesight, well, that's actually a complex question because dry eyes can change your vision. So, like I said, you can get these fluctuations in your vision because of dry eyes. So, if your eyes are more dry, your vision will get more blurry. It's typically a not a permanent change, but they can cause some fluctuations in your visions. Or dry eye leads to some blurry vision that can fluctuate. But there are other things that could actually impact dry eye indirectly.
So, I know we had mentioned in a question earlier about prednisone and whether it helps dry eyes. So, prednisone is a steroid eye medication and oral steroids as well as steroid eye drops could actually lead to cataracts. And cataract is a cloudy lens in the eye, and that could cause permanent decrease in vision. And so then, cataract surgery can be done. If it's found to be severe enough, cataract surgery can be performed to improve vision. So, there are these indirect effects that GVHD can have on the eyes that could cause potentially a permanent change.
(47:47) [Thom Stewart] Okay. As a follow-up to the prednisone question, what about using semi rigid gas permeable contact lenses? Are they aggravating?
(47:57) [Amy Lin] So, semi rigid gas permeable contact lenses, they cause less of an increase in dry eye compared to soft contact lenses. But for some people, it can cause a little bit of an increase in dry eye. So, again, it depends on your own personal severity of dry eyes. If yours is relatively mild to moderate side, and you're wearing your gas permeable contact lenses and you feel fine, I'm sure you can continue to wear them as long as you're getting routine checkups with your eye doctor.
If you're wearing them and you're having more irritation, you're not able to wear the contact lenses very long, then that might mean that the gas permeable contact lenses could be actually worsening your dry eyes. And so, again, going in to see your eye doctor, see how much dry eyes there are, would be recommended.
(48:53) [Thom Stewart] This questioner has a scleral lens that has a serial number etched into it, and that is bothersome. Is the serial number mandatory for these types of lenses?
(49:04) [Amy Lin] That is something I'm not... I'm actually not aware of. I don't know that. I presume it might have something to do with the brand of scleral contact lens. I actually don't fit people with scleral contact lenses. Personally, I refer all my patients to one of our specialized contact lens fitters for the scleral lens. So, that would be a question for your scleral contact lens fitter. If the serial number is bothersome, perhaps they could find a way to either not have the serial number in there or maybe try another brand that doesn't have the serial number etched into there. But I just don't know the answer to that question.
(49:48) [Thom Stewart] Okay. Is there a downside to cauterizing the punctal ducts?
(49:53) [Amy Lin] Okay. Yeah. So, that's something which I didn't mention in my talk, but it's related to the punctal plugs that I did mention.
So, like I mentioned before, the punctal plugs plug up the tear drainage system for the eye to help dry eyes. Punctal cautery is a way to close down the tear drainage system of the eye permanently, so, you don't have to worry about plugs, because sometimes the plugs can fall out. And then, if they fall out, they're obviously not doing anything.
And so, punctal cautery is a procedure done where heat is used to close down the opening to the tear drainage system, and that's a permanent thing. I suppose, possible side effects could be, it could actually lead to increased tearing or things or maybe too teary. However, most people with GVHD in their eyes tend to have very severe dry eyes, so, having the over-tearing is not something that I typically see.
So, if it's permanently closed down and you're having more tearing, then that could be an issue because it's hard to open that up again, because it's supposed to be a permanent procedure.
So, if someone's getting punctal cautery, or we're thinking of it, it usually means we've failed plugs or the plugs keep falling out. But we know that when the plug is in, it's actually helping. So then, I would go to punctal cautery.
Another potential issue could be, you're going to have some maybe redness and irritation in that side for a few days after the punctal cautery is done, but that is typically very temporary. But otherwise, punctal cautery is something that is very highly tolerated. And I actually highly recommended it for anyone where the punctal plugs are not staying in.
(51:48) [Thom Stewart] There's a question here about frequency of visits to ophthalmologists. The questioner asks, "Should I see my ophthalmologist every six months?"
(51:59) [Amy Lin] That'll depend on your severity of dry eyes. So, if you're on the milder side of dry eyes, once a year should be just fine. If you're on some treatment and it's not quite working for you, you may need to see your ophthalmologist more frequently. And so, you get on a regimen that works for you.
And then, after that, it depends on how well you're doing. If you are getting a lot of treatment changes or recommendations, then I typically see my patients more frequently. Maybe have them come back in one month or three months for another check, see how the hell they're doing. But again, this is one of those questions, it depends on how bad your dry eyes are. If you're doing okay, once a year is fine. You're not doing okay or if you're needing a lot of treatment changes, you may need multiple visits per year.
(52:53) [Thom Stewart] This questioner has a question about heat compresses. He says, "My doctor recommended to me heat compresses. You didn't mention this. What do you think?"
(53:03) [Amy Lin] Yes. So, again, I mentioned that there's a lot of things I didn't mention just in the interest of time. So, heat compresses are actually really useful. It can be really useful for dry eye.
If you have plugged up oil glands next to your eyelashes - so there's actually these other little glands, which I didn't mention in my talk, which actually are responsible for releasing oil into your tears - and having oil in your tears is important because it helps, that oil helps the tears spread across your eyes evenly. And it also helps prolong the amount of time that the tears are there, prevents them from evaporating.
And so, this is something that can be seen on an eye exam, or I can tell if those oil glands are plugged up. And so, as they are plugged up, then I would recommend warm compresses, heat compresses to help. Because what that does is, the heat helps open up those plugged up oil glands so they can get the proper oils into your tears. So, yes, I think they can be helpful. But only if you have plugged up oil glands next to your eyelashes which only an eye doctor can say if that's present or not.
(54:16) [Thom Stewart] Here's another question on Refresh drops. "Are the Refresh vials a one-day, one-time use, or multi day use?"
(54:28) [Amy Lin] They're good for 24 hours open, so whether it's the Refresh vials or any other brand of preservative free-artificial tear in little vials, each vial is good for 24 hours. So, you can use it multiple times during that 24-hour period, but then, you have to throw it out after 24 hours because there's no preservative in there. There could be potential contamination that can get in there after 24 hours. So, I recommend throwing them out after 24 hours. But you can use them multiple times during that time period that they're open.
(55:06) [Thom Stewart] A question now about blue light. "Are blue light blocking lenses beneficial when viewing a computer?"
(55:15) [Amy Lin] That's a really good question. So, that's actually a point of almost controversy because blue light blocking lenses are actually... they're a fad right now. And they've been a fad maybe for the last year or two. And it actually was born from some technology that was developed several years ago in lens implants for cataract surgeries. So, we actually have lens implants for cataract surgery that are blue light blocking.
And when they first came out, they were touted as being a great way to maybe lessen the chance of developing another eye disease called macular degeneration. But anyway, at that time, when they came out several years ago, there was some subsequent studies that were done, which found that the blue light blocking lens implants really didn't do anything for macular degeneration. It didn't really prevent it. It was fine and we still use them nowadays. But we don't really use that for that particular benefit because that has not shown to pan out.
But interestingly, that technology or that thought has transferred now into blue light blocking glasses, which have been touted to prevent some of these other eye diseases, may have been touted to prevent eyestrain and prevent all sorts of other things. There's actually been a big study that came out in the past few months where they tested blue light blocking glasses versus no glasses or versus glasses without any blue eye blocking. Bottom line, blue light blocking glasses actually did nothing for eyestrain and nothing to decrease dry eyes or any of this.
So, when patients asked me, like, "Hey, do you recommend that for use of computer?" I honestly tell them, "I wouldn't bother wasting my money." I don't think they're harmful. And I have some other patients who use them and swear that they help, and that it's fine. But I just don't think the scientific evidence is out there to support its use. But it's very popular. Even our optical shop, I think, offers that technology and mention it to patients whenever patients get their glasses made. But I honestly don't think that it makes a difference.
(57:35) [Thom Stewart] All right. So, we're getting a little short on time. Now, we have time for just one last question. And the question is, "I developed so much mucus in my eyes but not tears in my eyes. That is what seems to be so painful. Is this typical?"
(57:54) [Amy Lin] So, mucus is basically dried up tears. So, it is something that I see a lot where there can be a lot of mucus. And what's happening is that, it's usually because the tears dry up so quickly, all that's left behind is mucus. And so, that mucus is what's left over, it tends to be really stringy. So, if you were to wipe it off your eye, you can get a corner stuck on your eye, and have it actually string out before you get it off your eyes. So, if it's like that, it means you've got dried up tears.
So, that's actually something that I see. It's a sign that dry eyes are significant. And if you still have that, that does mean that you need to keep up with treatment regimens or maybe even need more treatment for dry eyes to help with that.
(58:43) [Thom Stewart] Closing. All right. Well, thank you, Dr. Lin. On behalf of BMT InfoNet and our partners, thank you for your very helpful remarks. And thank you, the audience, for your excellent questions. That will end our presentation for today. Thank you all very much for your participation.(59:05) [Amy Lin] Thank you so much. Have a great day, everybody.
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