GVHD EYES, drugs no relief
 

I've been on Restasis for four months, Lotemax for two months, and eye drops every 15-30 minutes. NO RELIEF

Who's been thru this and any advise?

John
Portland, ORegon

What are your symptoms?

I have GVHD. The eyes are being treated for dry eye. I was having vision shift, discharge from the eyes, and eyes hurting. In addition to Restatis, and preservative free eye drops I am using heat soaks on the eyes and strilid to remove discharge from eye lashes. It has been 5 months and I am seeing noticeable improvement.

Ray

Hi RAR,
We've talked before. Im in Portland with Ballie.
Doing same but added Lotemax and suffer same symptoms as you but not improving.
Mine have been about 5 months with these eyes. Here's a reply from another BMT brother in Portland.
"Your dry eye symptoms sound a lot like Gordon's. I think OHSU made him tears from his plasma that helped. He recently got contact lenses that cover the rough surface of his eyes. He says they really help. I hope you reach out to him. I am sure he will be able to tell you more and it might help you get more relief."
Man,it's really limiting and takes so much of my awareness just managing my eyes. I have other GVHD but not this disabling.
JOHN

John and Ray, can you describe how the eyes feel with this? Is it mostly a "dry eye" feeling? It seems that I am borderline with this but it hasn't been enough to cause me problems. I notice my eyes feeling differently every afternoon, early evening as being real tired with a minor "gritty" feeling. I know I need to go to bed and get some sleep when this happens. I am better by morning. Again, not enough to cause me discomfort, but differently than I have ever felt prior to transplant.
Thank you.

Hey Gary,

Sounds like you have a mild case of what I have. I need drops every 15 minutes, sensitive to cold and wind, the drops only give 70% relief for a few minutes. Strain looking at computer, vision goes in and out, sometime blurred when driving. Never wore glasses except readers as I got older.
Sunday had to ask wife the football score on a 37" and 10 feet away. Comes and goes.
A real distraction.
JOHN

By any chance is one of your medications Voriconazole? I noticed similar effects while on Voriconazole, but not as serious as you suggest. This went away as soon as I changed to posaconazole.

If any of the following side effects occur while taking voriconazole, check with your doctor immediately:
More common •Difficulty seeing at night
•increased sensitivity of the eyes to sunlight
•rash
•vision changes

Voriconazole - VFEND

Yes, been on 200mg twice a day for almost 3 months for Aspergillosis, a lung fungus. Is that what you had?

Expensive, eh?

Yes it is expensive but about a third of the cost of the posaconazole that they switched me to. My vision was definitely affected the whole time I was on Voriconazole. It didn't have anything to do with GVHD but was a direct effect of the Voriconazole. I noticed it mostly within an hour of taking the pills. Colors changed with sometimes everything looking yellow. My vision was changed the whole time I was on it. I had to go with a much stronger prescription for my glasses. Don't know if this is connected to your situation but it sounds like it might.

My insurance is charged $6,891.99 for a 30 day supply of posaconazole/Noxafil.

wHAT IS YOUR SHARE? YOU ARE WAY PAST THE DOUGHNUT HOLE.

I pay a $50.00 co-pay. My totals are about $25,000 per month for Vidaza plus the prescriptions. Insurance pays almost all.

The feeling in the eyes was like a foreign body in the eye or like there is sand in the eye. Lubricating drops gives temporary relief. The eye doctor knew nothing about GVHD so he is treating it as dry eye.

My drugs cost nothing, no co pay or premium. I use the VA.

Ray