Eye problems

[woz]

Hi everybody, Thanks in advance, for your comments.

Has anybody had a lot of trouble with there eyes. When first diagonised, my eyes were very red in colour, used to freak a lot of people out, At the present time I am in remission, taking azathiaprine for maintenance, have been off pred for about 9 months. My eyes have always been sore late in the day, and into the night, I have had conjunctivitis twice, since August (presently have conjunctivitis for the second time, have never had it before), I also seem to get pain, along my eyebrows (headache like). I live in sunglasses, and sometimes wear them at night to cut out the glare. My blood work is done monthly, and is always perfect. My ophthalmologist checks my eyes every 3 months, and all is good.

Does anyone have any similar.


Regards Woz...

[windchime]

The pain along the brow could be sinus as that is where part of sinuses are located. If they're congested it can hurt to press on them. The light sensitivity seems to be a common thread among those with wegs. I know my right eye is becoming sensitive to light and now it has started tearing. It sounds like you are doing all that you can do. The conjunctivitis could just be luck of the draw or you're more susceptible because of the AZA. Just my two cents.

[ingemlb]

I have a long history of eye problems. We never knew what was behind it. I had very dry eyes and often I would wake up with tomato red eyes and the sensation of skin tearing. Or I would suddenly feel like I had sand grains in the eye and that would turn into a corneal ulcer. I thought first it was connected with Crohn's as the eyes used to play up around the same time the bowels became inflamed. However the Ophthalmologist didn't think so. He was more leaning towards Sjogrens. I have had very dry lips for years and dry mouth but never went and had any tests done.

Last year I had a lot of issues with the red eyes and they were particularly badly inflamed when I was admitted to hospital in January this year. Then after diagnosis (with Wegener's) and the onset of treatment esp Pred the eyes finally cleared. For about a month now my eyes are as white as possible and no sign or symptoms of inflammation. I saw the Ophthalmologist last Monday and he said my eyes showed no damage whatsoever. Which is quite amazing given the years of issues and inflammation.

The dry eyes make it difficult to sleep. As after the eyes have been shut for a while they seem to want to stick like glue and when you open them it feels like you are tearing the skin. So to overcome that I use a gel called Genteel Gel every night before going to bed. It lasts a bit longer than saline eye drops and if I wake up in the middle of the night I will re-apply it. I do this regardless if the eyes are inflamed or not and so far the last month they have been perfect. First time in ages.

So now we know where these problems came from. My Ophthalmologist is now convinced the culprit is Wegener's and my eyes are responding very well to the treatment. I hope it is not just the pred but that the Methotrexate is helping as well because otherwise I may be in trouble again once I get off the Pred.

I agree with cindy re your brow pain. It definitely sounds like sinus related. I suffered with sinus headaches about the same area maybe a bit higher all of last year until I had sinus surgery and since then the headaches have stopped. If you are not under an ENT specialist may well be worth getting your sinus' checked. It's not always obvious that the sinus' are blocked. I had bad sinuses for years but had no symptoms that I would have expected from Sinusitis. For many years they were blocked near the ear drums and caused vertigo so I had to have grommets implanted regularly. Then it changed to post nasal drip and before I knew it I was coughing my head off for years. Nobody mentioned the cough could have been related to the Sinus issues. I wish now I had seen an ENT specialist when the cough first started. Could have saved myself a lot of grief.

Hope you find out what is behind your eye issues Woz. All the best

[me2]

Early in my most recent flare of a few weeks I first experienced eye problems. Redness, glued shut at night sometimes from being dry. With huge doses of prednisone and then Rituxan my eyes are doing much better. Normal in fact. -- I'm going to chalk it up to Wegener's .

I also had brow pain that was associated with my sinus problems. These have pretty much resolved with treatment also.

[woz]

Thanks for the info, I will be seeing my ENT, ruemy and thoracic specialist shortly, I might see if I can get my meds changed, I went off azathiaprine for 10 days, just to see if there were a difference, my eyes were so much better, and I didn't have any headaches, maybe its a placebo effect, I don't know, I will have to check with the experts.

Regards Woz....