GVH of the Eye

Interesting thing about GVH* of the eye(s). It's not like having eye pain that goes away when the irritant go away. With GVH, irritation of some sort--wind or light, usually--causes the immune system to mount an attack on the cornea. The pain can be intense, the eye profusely waters, and with most people it feels like there is something in the eye.

*GVH is Graft-versus-Host disease, which happens to bone marrow transplant recipients. It is explained at end of this post.

Removing the original source of irritation does no good at all because once GVH kicks in, the source of pain is the auto-immune response. You have to get the immune system to back off. There are medications for that, but without them I have found it necessary to keep my eyes closed for two or three hours before the attack stops. It's important to notice a GVH attack before it starts. Sometimes that can't be done, as just a split second of direct sun on the eye can trigger an attack for me, or even a sudden gust of wind that gets up under my sunglasses, which I wear outside even on cloudy days. Mostly, however, I can notice my eyes getting dry and a little irritated, and that is the time to close my eyes for a couple minutes and get in an environment with less light and no air movement. What you never want to do is let the GVH attack get started because then those methods don't work. The dry eyes and irritation are no longer the problem, the immune system attack is the problem, and it's not going to go away just by removing sources of irritation. I have found something that's working for me, though.

Stopping a GVH Eye Attack

I was prescribed some steroid eye drops. They work a little bit, but they have not proven to be the solution. However, the instructions for taking the steroid drops seems to work whether or not I actually use the steroid drops at all! The instructions on the steroid drops tell me to pull down my lower eyelid, put one drop in the pocket it forms, then close my eyes for two minutes while keeping a little pressure on the inside corner of the eye. I think that pressure on the inside of the eye is to block the tear duct so tears build up inside your eye. Those accumulating tears mix with that drop of steroid at the bottom of the eye and dilute it and lift it across the whole eye. That's my guess, anyway. Since I read to do that with the steroid drops, though, I have tried putting pressure on the inner corner of my eyes just to let tears build up, and if I do that long enough, it seems to stop the GVH attack, even without any eye drops at all. Sometimes I have to do it for more than five minutes, but I don't mind because I can feel the pain backing off the whole five minutes. I don't know why that works, but for me, at least right now, it does. I have to suppose that for some people GVH of the eye is an ongoing thing. There's no solution for that. I'm just talking about those terrible, painful attacks that can last for hours and make me functionally blind, since it becomes impossible to open my eyes for more than a second or two. As far as the ongoing GVH goes, I know that my eyes only produce 50% or less of the tears they're supposed to. They are chronically dry. Restasis, says my cancer opthalmologist, is the only solution for the lack of tears (plus that plug she put in the tear duct that's in the lower lid of our eyes).

GVH Definition

GVH means Graft-versus-Host. Like a few other people, I've had my blood system replaced. It's called a bone marrow or stem cell transplant. Since your bone marrow produces all your blood cells, a bone marrow transplant also transplants your blood as well. When you get, say, a kidney transplant, you have to worry about your body rejecting it. When you replace your immune system, which is part of your blood system, you have to worry about your immune system rejecting your body. So, when a bone marrow transplant goes awry, the doctors don't call it rejection, they call it Graft-versus-Host or GVH. GVH especially likes the gut, skin, and eyes of marrow transplant recipients. As long as it's kept there, it's not all that dangerous. The problem is when the immune system figures the attack on those body parts is going so well that it can move on to other organs, like the liver or kidney.