cant remember !

[DEE]

Can anyone remind me why wg consult said to let him know i noticed RED EYE
not that i go looking for things believe me ive enough at the moment but have found a small patcth on left eye which is the eye that i have the most problems with
its slightly sore and a bit teary also bank holiday here so cant do much about until tuesday
its just that i cant remember the information
thanks for any help you can give DEE X

[JanW]

Wegs can attack the eye. That's why it's important that we have baseline eye exams by an eye doctor (not optometrist) who is experience in autoimmune diseases (I don't think you can find one experienced solely in WGs -- couldn't make a living!) . My doc discovered old inflammation in the eye -- really can't say that whether it's WGs or not, but ruled 'no vasculitis present in eye.' And I need to go back in six months since I am newly diagnosed. I'm 20/20 vision so I hadn't been to an eye doc in 20 years!

[elephant]

Hi Dee, yes when your eye is pink with no pus....it is most likely WG. Before I was diagnosed I had left eye pain and both eyes would get pink. I had prescriptions for dry eye, infection, allergies ...ect... No one knew what was going on. I saw probably about 10 eye doctors and they did not know what was going on. Only one said, well it's inflammation. Hello.....I know that ...but what??? I still do get left eye pain and now have glaucoma.

[Lightwarrior]

My eyes aren't red, but they are swollen and tear. Optholomist said I have dry eyes so I use natural tears eye drops which helps some. I have found that puttiing a cold wet wash cloth with a bit of ice in it for a few moments before I fall asleep seems to bring longer relief. Just had the optholomist check in the last month, no glaucoma or changes.

[jola57]

Same here Lightwarrior, swollen, painfull and teary eyes. They are also blury and bulging and at the beggining went pink on me. It was scleritis, which fortunatley is benign and cleared up in couple of months of using steroid eye drops. Not so with some of our weggie friends, where glaucoma, or growth behind the eye is a very serious condition. I just had my yearly check and I'm still 20/20 but in bad light I need glasses so got myself a 1.5+ and no more straining to read.

[Natalie]

Hi DEE , If you have read my first post then you would know that I have lost sight in my left eye from WG. All started with watery eyes headahes my eyes were so sensitive to light . 8 months later i had a weird thing happen to my eyes .. Blurry vision my right eye went all blotchy and lasted about 1 1/2 hrs then went , no one could explain it . no one could tell me why my eyes were extreamly sensitive to light watery all the time with severe head aches all the time . Blood tests were fine Ct showed my sinises were blocked . 8 months later they gave me a sinis op removerd some bone because they said the crusting was getting stuck and that why your getting headaches and watery eyes . Didnt help. They kept thinking all the pain was comming from either my nose or ears . No one was listening to me about my eyes . 3 months later when to hospital with blurry vision , dont know why sent me home , was back with in 3 days and addmitted for CT and MRI , still no answers sent home .. my body was aching bad Had a fluro angiography all good vision no better they started me on IV steroids 3 doses , this did clear the eye a bit but soon became blurry after IV doses was stopped . I finally went totally blind in my left . alot more to this story but If i could give some some advise keep at your doctors to dig deeper , I had a few MRI's of orbits but no one could see anything wrong until my Opthomoligist invited me up to Brisbane one night to confrence with about 20 other Optho's and one of them spotted it right off the bat , Sorry couldnt tell you what ?? but what I know it was Granuloma build up around my optic nerve , which in turn killed It sending me blind. I dont know if im helping or what but I f I tell my story maybe it will save someone else from losing there sight . Natalie

[DEE]

thanks eyeone eye not asore today but will get it check out at gp tomorrow just had a particularlt bad day yesterday and did not need another problem DEE x

[DEE]

forgive the spelling in above post should not post when just woke up brain not in action :) DEE x

[elephant]

Thanks Natalie for the information on the eye. I have a good eye doctor and I keep him informed.

[Natalie]

thanks eyeone eye not asore today but will get it check out at gp tomorrow just had a particularlt bad day yesterday and did not need another problem DEE x totally understand about the bad days :( hope you are feeling better soon .

[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

[jola57]

I have been to all the docs to do baseline exams at the beginning of my disease, that included eyes, lungs, bones, bladder, kidneys etc. Now if anything is wrong they have a comparison. Everyone should do this - it is never to late since our wegs is a progressive disease

[elephant]

That is good advice Jolanta. I feel like I had my whole body examined!

[JanW]

Make sure too that when every doctor examines you, he or she sends a detail letter to the primary doc in charges of your WG care (for most of us, it should be your rheumy). If you have another doc that if involved closely with you (e.g. ENT, or in my case, podiatrist for my foot) my sure they are sending written documents back and forth when they examine you so that everyone who sees you on a regular basis has complete files.

[flana]

but what I know it was Granuloma build up around my optic nerve , which in turn killed It sending me blind. I dont know if im helping or what but I f I tell my story maybe it will save someone else from losing there sight . Natalie

Natalie Hi, was there a way to detect the granulomas around the optic nerves? If so then we should all be regularly checking for this condition no? Also was a Visante OCT done to diagnose Closed Angle Glaucoma?

[Sangye]

Raj, they were found via CT scan which was done because she had symptoms. It isn't a routine test that we should have done-- very high radiation. If you have granulomas in that area or anywhere else in the brain, you'll have symptoms.

[Minneapolismark]

Please get well, and thanks for letting us come along side you.