cant remember !

[Cindy M]

Hi Dee, really pay attention to your eyes. I made a mistake last summer and kept putting off the problems with my eye. Went to my optometrist who treated me for an infection when it was WG related. By the time I went back to my opthamologist who had seen me previously for WG involvement I was all but completely blind in my right eye. He increased my preds from 40 mg to 80 mg and called my rheumy to set me up with getting more preds through IV. I have gotten back alot of my vision, not complete, still suffer from double vision, my eye remains to be very sensitive to wind, light etc. I tend to keep it shut alot. I did have to wear an eye patch for 3 months and was not allowed to drive during that time. The opthamologist has me on xalatan because of the amount of pressure in that eye and I also put on an ointment of tobrex whenever I feel the need. The opthamologist is very happy with my improvement as he was not expecting for me to get any of my vision back. So yes, be very aware of any eye involvement.

[Natalie]

Hi Cindy , what symtoms / problems were you having with your eyes before going blind ?. I too have lost sight in my left eye and can relate to the sesitivite to wind and light but these were my symptoms leading up to the loss of sight .I Dont have any issues with it now , are you driving again ? . sorry if im asking to many questions . Nat

[sharon]

Nat, did your eyes get overly tired, i have had my eyes checked just by an opt. prescription has not really changed, but i find i wear them considerably more, they get really tired, and occassionathey seem like i am looking through smoke (goes cloudy). I have a rest or a sleep, problem goes?

[Cindy M]

When I was going for my sinus biopsy to confirm WG my ENT had an opthamologist take a look at my right eye because I kept it closed most of the time. It was very sensitive and blurry and I found it more comfortable to keep it closed. After the biopsy confirmed that it was WG they sent me for an orbital CT scan. My eye had started to bulge and the pain, bloodshot etc kept getting worse. The CT scan showed a mass behind the eye. Depending on the day my eye would bulge more one day then the next.

As I was trying to taper down on the preds (I can't seem to get below 45 mg) I was not paying proper attention to my eye. The eye became infected, cloudy and I could not see out of it. I went to my optometrist who did not know anything about WG and he treated it as an eye infection with pink eye. He said that he would possible make an appointment with a specialist if things didn't improve. I told him about the opthamologist I had been seeing and suggested that I go back to see him. Against my better judgement I listened to the optometrist when he said this opthamologist probably would not treat me because he was also into eye lifts etc. and not into this type of problem. The funny thing was was that I was already seeing this opthomologist for this problem. Anyways after wasting about 2 weeks before I went back to the proper opthamologist I had lost most of my vision. Because of the bulging and pressure I was also getting bleeding from the eye because of broken blood vessels. The opthamologist was very worried and I cannot say enough good things about him. Because of him I do have most of my sight back in the eye. I do continue to have some limitations in movement with the eye and some double vision.

With all this said I again am having more sensitivity to the eye. I am currently down to 45 mg of preds again, tappering down from 60 mg and once again the eye is flaring up. I will be alot more diligent with the eye and keep a close watch on it. I have an appointment with my rhuemy on the 13th so we will see what happens then. After 3 months or keeping a patch on the eye I am now driving again. I do not like to drive to much, especially at night or if the sun is really bright. I am lucky and have a daughter and sister that will drive if I really need them to.

You thought you had alot of questions, no where near the length of my answers.

[DEE]

thanks for your advice cindy will take onboard and do something about it thanks again DEEx

[Natalie]

Thanks for the reply Cindy . It sucks that you can't seem to get lower than 45 mg pred with out symptoms comming back . I never had the bulging , but The pain and sesitivite was very bad and its sad that I just let it go because no one could help .. I just started dealing with the pain as if This was as good as it was going to get . Tuff luck Deal with it . Sounds like more could have been done in both our cases but the pain and state of mined I was in I didnt have the energy to fight anymore this is when I needed my family . And the fact that it took to long to find the problem and then how to treat it .. TO late Damage Is done .
I too drive but It was hard after so long being out of the car .. getting used to life with one eye was hard .. but very happy I still have one

[sharon]

Nat, what type of Dr ended up fixing your eye problem?

[JanW]

My rheumy advises every newly diagnosed weggie to have a complete eye exam, definitely by an optholomologist (a medical doctor), preferably one who specializes in auto-immune diseases (I'm sure not easy to find unless you live in a city). Mine was able to see that I had had inflammation in my eye at some point, potentially caused by WG, but was able to rule out vasculitis of the eye completely. I have another follow up in six months then go to once a year. The huge risk is also glaucoma, if you have been on pred (esp. for me as I am African American). I should mention that I never felt anything different in my eye, so the inflammation was completely silent.

[Sangye]

I agree with Jan. Gotta see an opthalmologist at least annually whether or not you have eye involvement. If you do have eye involvement, you should try to see one who specializes in autoimmune diseases. I saw one at JH-- the specialty was something like Immunological Opthalmology.

My eyes are affected by the elevated intracranial pressure thing I have-- fallout from Wegs, but not Wegs itself. So I see an opthalmologist at JH who specializes in that particular condition.

[Col 23]

Just wondering Cindy how did they treat the eye as this is one of my problem areas?
Col 23