ingemlb
02-26-2014, 08:46 AM
I haven't actually followed up on my eyes a lot as the other issues seemed more urgent at the moment. But this morning I woke up with a bright red left eye so I thought I would get some feedback from others where eyes are affected by Wegener's.
Background: In 2009 I had an extremely sudden onset severe pain in my left eye. Couldn't tolerate any light and the eye was bright red and weeping like mad. I had to wear a patch whilst my husband drove me to the Eye and Ear hospital who diagnosed a corneal ulcer. Gave me some lubricating cream and sent me home with pain killers. I found the only way I could cope with the pain and the stress of it all was to spend a few days in a dark room swallowing tramadol and valium. The tramadol seemed to help with the pain and the valium knocked me out enough to stand the idea of lying in a dark room. To go to the bathroom or kitchen I had to cover the eye with a patch and a pair of very dark glasses but even then bits of light would get at it. Closing the eye seemed to make it worse.
Ok that one cleared up and I went to am Ophthalmologist who found scarring in the left cornea, diagnosed extremely dry eyes. His theory was my dry eyes would have a tendency to glue the eyes shut then on waking I would tear them open eventually causing this ulcer. He prescribed this "Genteel gel" for the night and artificial tears for the day which I have been using ever since. The redness and pain never started during the day only after having the eyes shut. but once it started I had to keep them open for it to heal hence the dark room was the best way forward. The tiniest amount of light would set off the pain and weeping. The only thing I found lately I could manage was reading my kindle.
Over the year this condition has alternated between the eyes. One major attack I was on holidays. We had been to the beach and I woke up with what felt like grains of sand in my eye. But I couldn't see anything. This brought on the usual tomato red eye, pain and weeping. We had relatives with us and I had to spend the next few days in my bedroom out of the light. We went to emergency and they had an eye clinic but there was no foreign matter in my eye.
Since then this grainy feeling is usually what will precede a full on attack.
Since around Christmas the right eye has been playing up. The last really bad attack was in November. Since then there has been a lot of red eyes but not so much weeping and pain. When i came into hospital 5 weeks ago I had this inflammation in my right eye worse some days than others and have been able to manage with the gel and drops. The light has not been a problem but the redness is there every morning on waking sometimes less bright than others and then during the day it clears to a more pinkish look.
This morning was the worst. And now it's the left eye again.
I was seeing the Opthalmologist fairly regularly whilst the eyes were flaring up until early 2012. Then suddenly the problem disappeared for over a year. I had to have my eyes tested in May whilst overseas for new glasses and again on returning home in August I think and the amazing thing is that they found my eyes were quite healthy, apart from this little scarring in the left cornea my vision had improved in the last few years so i needed less strong glasses which explained why lately everything had become blurry. i kept thinking my glasses were dirty all the time. I wear glasses for driving and watching tv. Don't need them for reading. Anyway I was ecstatic as it seemed this was one problem that had cleared.
These eye issues started about the same time as the Crohn's diagnosis (well sort of more of a guess than diagnosis, when during a colonoscopy he found the Ileum was inflamed) so I had asked the Opthalmologist if the eye issue could be linked to the Crohn's. he didn't believe it was (despite always occurring at the same time as bowel inflammations) but felt it was more likely to be Sjoegrens. But again I didn't ask how can one test for that.
My gastroenterologist now thinks that all the ulceration in bowels, stomach, mouth and eyes and the sinusitis are all due to Wegener's but so far no rest results have found any trace of granulomas. I was told that some of these should be fixed by the Prednisolone but so far the Prednisolone has not changed the eyes or sinus issues. Might be early days so will be patient and wait.
Well that's all for now. i am noticing a bit of pain setting in in the eye so I sure hope I won't be arriving home with a full-blown ulcer but also hope it doesn't cause another delay with the discharge in case they want to investigate this further :( Inge.
Background: In 2009 I had an extremely sudden onset severe pain in my left eye. Couldn't tolerate any light and the eye was bright red and weeping like mad. I had to wear a patch whilst my husband drove me to the Eye and Ear hospital who diagnosed a corneal ulcer. Gave me some lubricating cream and sent me home with pain killers. I found the only way I could cope with the pain and the stress of it all was to spend a few days in a dark room swallowing tramadol and valium. The tramadol seemed to help with the pain and the valium knocked me out enough to stand the idea of lying in a dark room. To go to the bathroom or kitchen I had to cover the eye with a patch and a pair of very dark glasses but even then bits of light would get at it. Closing the eye seemed to make it worse.
Ok that one cleared up and I went to am Ophthalmologist who found scarring in the left cornea, diagnosed extremely dry eyes. His theory was my dry eyes would have a tendency to glue the eyes shut then on waking I would tear them open eventually causing this ulcer. He prescribed this "Genteel gel" for the night and artificial tears for the day which I have been using ever since. The redness and pain never started during the day only after having the eyes shut. but once it started I had to keep them open for it to heal hence the dark room was the best way forward. The tiniest amount of light would set off the pain and weeping. The only thing I found lately I could manage was reading my kindle.
Over the year this condition has alternated between the eyes. One major attack I was on holidays. We had been to the beach and I woke up with what felt like grains of sand in my eye. But I couldn't see anything. This brought on the usual tomato red eye, pain and weeping. We had relatives with us and I had to spend the next few days in my bedroom out of the light. We went to emergency and they had an eye clinic but there was no foreign matter in my eye.
Since then this grainy feeling is usually what will precede a full on attack.
Since around Christmas the right eye has been playing up. The last really bad attack was in November. Since then there has been a lot of red eyes but not so much weeping and pain. When i came into hospital 5 weeks ago I had this inflammation in my right eye worse some days than others and have been able to manage with the gel and drops. The light has not been a problem but the redness is there every morning on waking sometimes less bright than others and then during the day it clears to a more pinkish look.
This morning was the worst. And now it's the left eye again.
I was seeing the Opthalmologist fairly regularly whilst the eyes were flaring up until early 2012. Then suddenly the problem disappeared for over a year. I had to have my eyes tested in May whilst overseas for new glasses and again on returning home in August I think and the amazing thing is that they found my eyes were quite healthy, apart from this little scarring in the left cornea my vision had improved in the last few years so i needed less strong glasses which explained why lately everything had become blurry. i kept thinking my glasses were dirty all the time. I wear glasses for driving and watching tv. Don't need them for reading. Anyway I was ecstatic as it seemed this was one problem that had cleared.
These eye issues started about the same time as the Crohn's diagnosis (well sort of more of a guess than diagnosis, when during a colonoscopy he found the Ileum was inflamed) so I had asked the Opthalmologist if the eye issue could be linked to the Crohn's. he didn't believe it was (despite always occurring at the same time as bowel inflammations) but felt it was more likely to be Sjoegrens. But again I didn't ask how can one test for that.
My gastroenterologist now thinks that all the ulceration in bowels, stomach, mouth and eyes and the sinusitis are all due to Wegener's but so far no rest results have found any trace of granulomas. I was told that some of these should be fixed by the Prednisolone but so far the Prednisolone has not changed the eyes or sinus issues. Might be early days so will be patient and wait.
Well that's all for now. i am noticing a bit of pain setting in in the eye so I sure hope I won't be arriving home with a full-blown ulcer but also hope it doesn't cause another delay with the discharge in case they want to investigate this further :( Inge.