What kind of eye issues should I worry about

[Nancy-S]

I guess that's a silly question. When would I not worry? Anyway...

About six weeks ago it seemingly came on overnight. My eyes were okay (except for intermittent) blurred vision. I got a sandpaper type feeling at night. When I saw the eye doc, he was quick to tell me this did NOT happen overnight. He was very quick to tell me about all his knowledge of wgs although he kept calling it cellulitis. I didn't pay much attention to his "knowledge". He was certain vasculitis has nothing to do with my eye issues. He looked at me and said the cause is "old age and living in the dessert". Okay... if you say so. He gave me eye drops that do not help.

Since that day, two weeks ago, my eyes have become worse. They give out on me about an hour before bed. I can't read, or see very well. They burn, and feel like sandpaper. Currently, they are worse is in the morning. I wake up and can't see well for about an hour. They are crusted shut, so I have to clean them thoroughly with warm water. As the day progresses, my vision improves. I read his diagnosis, and it's keratoconjunctivitis. I think it's important to remember, prior to about 6 weeks ago, I NEVER HAD AN ISSUE. Yes, I'm getting older. Yes, I live in the dessert. I've been here for twenty years.

I think it's related. I wonder if anyone else here has a similar issue and what do you do about it?

[Al]

I guess that's a silly question. When would I not worry? Anyway....I wonder if anyone else here has a similar issue and what do you do about it?

Which doctor was it, Nancy? The opthamologist? He should know better. Sounds to me that he has been in the desert a little too long himself. There is a very strong probability that it is the wegs dog growling fiercely. Conjunctivitis is, in fact, a well-known symptom of vasculitis of the WG kind.

Al

[Nancy-S]

Yes, it was the opthamologist. He disappointed me, so so much. It makes me sad. But he is no longer my problem.

Thanks for you insight Al, you should write a book. I would stand in line to buy it.

[Nancy-S]

Geesh.. I misspelled dessert, TWICE. I need a nap.

[Al]

Geesh.. I misspelled dessert, TWICE. I need a nap.

Freud says there are no accidents, Nancy. How long since you've eaten? Is the pred talkin' to you...?

Al

[Nancy-S]

Oohhh...excellent point. I am very hungry. No energy to prepare food. I kinda wish I had pred hunger, that would mean I'm getting treatment.

[Al]

Oohhh...excellent point. I am very hungry. No energy to prepare food. I kinda wish I had pred hunger, that would mean I'm getting treatment.

The pred can wait, Nancy. Eat now....

Al

[Nancy-S]

Done. Sure could use dessert.

[Al]

Done. Sure could use dessert.
Go for it, Desert Queen. You deserve it!

Al

[Sangye]

My two cents: Wegs can do anything it wants as quickly as it wants. I developed massive numbers of blood clots at once after 3 days of being on the highest possible dose of pred (1,500 mg). That "can't happen." The Wegs dog is smarter than your eye doctor. :wink1:

[drz]

Scleritis is common with GPA. I had that shortly before I finally got my Wegs diagnosed. My optometrist who treated it was smart enough to know that scleritis often is related to some kind of underlying systemic disorder but he didn't know if that was true for me or what kind of disorder i had at the time. My eyes felt like they had sand in them at the time.

[Nancy-S]

How did he treat it? Did it improve?

Its rare to find a Dr that will admit to not knowing something. But I have to say its frightening how many doctors I've seen that say they have certain knowledge that symptom x, y, or z is not related to wgs.

Is it a lost cause to want to hand deliver to them info I get from Utah?

[Al]

Its rare to find a Dr that will admit to not knowing something. But I have to say its frightening how many doctors I've seen that say they have certain knowledge that symptom x, y, or z is not related to wgs. Is it a lost cause to want to hand deliver to them info I get from Utah?

Nancy, I think you need to deliver whatever Dr. Koening says to you back to your Arizona doctors. As for the scleritis, the thing to say to your Doc is, "Yes, but your idea [that it is aging, desert exposure--or even dessert exposure] can't be right, given its quick development right now. Now, I've heard from many WG sufferers who say that this is, in fact, a very common symptom or WG. Don't you think we should at least consider it?" Or something to that effect. By the way, some forms of scleritis are associated with connective tissue disease, another autoimmune disease that has overlapping symptoms with WG. Did the doctor mention that?

Al

[mishb]

One of my symptoms (pre diagnosis) was bright red eyes. They were kind of werewolf, vampire eyes. Sore, gritty and couldn't tolerate the light or sun very well.

My doctor said it was Uveitis and prescribed pred type eyedrops. They worked a treat to clear it up, then it came back.
My rheumy said it is Scleritis and that taking the pred will clear them.......and it did.
They do get sore and red in the mornings sometimes (not very often now) but clear by lunchtime after I have taken my daily pred dose (even down to 5mg clears them up).

I agree with Al, and also my doctor suggested I take a photo of the eyes whilst they were at their worst, to show the specialists.

I hope all goes well in Utah

[Hammy8241]

Scleritis is common with GPA. I had that shortly before I finally got my Wegs diagnosed .

Offtopic I know, but it would seem to be difficult to either shorten GPA or maybe it's just custom and practice at this early stage of name transition?

[Nancy-S]

Good to know there's hope for relief. Its ridiculous how fast the symptom continue. Thanks for the feedback.

Al, I will absolutely mention both points to the opthalmologist. Although, it will be in a letter, as I won't waste my time with his rightness again. I might even compose a generic, fill in the blank, letter to share with anyone experiencing the same (lack of) treatment. It will be informative, and courteous, and if the Dr has any hope it may help another patient to obtain better treatment.

[Al]

Good to know there's hope for relief. Its ridiculous how fast the symptom continue. Thanks for the feedback.

Al, I will absolutely mention both points to the opthalmologist. Although, it will be in a letter, as I won't waste my time with his rightness again. I might even compose a generic, fill in the blank, letter to share with anyone experiencing the same (lack of) treatment. It will be informative, and courteous, and if the Dr has any hope it may help another patient to obtain better treatment.

Good, Nancy! I think I inherited some tenets from my mother, who was a school teacher all her adult life: Never give up on a student, even when the probability of reaching him or her is negligible. I truly believe that we can make a few doctors better at their jobs. Not always, but once in a while. And that is better than not at all. Of course, it is also true that you deserve the best treatment possible. Are these two goals incompatible? Not necessarily; your solution is, I think, a fine way of addressing both issues.

Al

Al

[Dirty Don]

I might even compose a generic, fill in the blank, letter to share with anyone experiencing the same (lack of) treatment. It will be informative, and courteous, and if the Dr has any hope it may help another patient to obtain better treatment.

I'd be glad to help out on that, I'm an old...not ancient yet Al...English/Language teacher...glad to help out if I can...I think the letter is a great idea...some of us don't know how or where to start...that would help immediately!

[Al]

I'd be glad to help out on that, I'm an old...not ancient yet Al...English/Language teacher...glad to help out if I can...I think the letter is a great idea...some of us don't know how or where to start...that would help immediately!
"Sick Old Man", Don, is a frame of mind, and used for convenience in inconvenient situations. "Ancient" is something else--anywhere from sagacious to rotting (which, perhaps, are not mutually exclusive). I'd say, do the letter--great idea! We can always adapt it for parochial needs....

Al

[Dirty Don]

used for convenience in inconvenient situations.Al

Don't be stealing my life philosophies!!! Always a way in or out...LOL!!

[Nancy-S]

That sounds great. Yes, please, let's do this. It can't hurt and you are so right, many of us don't know how or where to start.

Communication is imperative, and not always easy (especially when trying to communicate with an ego). I'll write something (retired 911 operator with no formal education). We can edit, add, subtract and come up with a document for anyone to use . It probably could be short and simple, and most important a strong request to the physician to open his mind.

[Nancy-S]

That sounds great. Yes, please, let's do this. It can't hurt and you are so right, many of us don't know how or where to start.

Communication is imperative, and not always easy (especially when trying to communicate with an ego). I'll write something (retired 911 operator with no formal education). We can edit, add, subtract and come up with a document for anyone to use . It probably could be short and simple, and most important a strong request to the physician to open his mind.

[Dirty Don]

Ditto ditto...LOL...sorry, couldn't resist your double send there! Anyway, YES, big yes...this may be a worthwhile project Nancy...and once you've written a draft, send it to those whom you would think would participate, and/or, post it on here somewhere where all can read and edit or make suggestions at least...I wouldn't open it to editing just 'cuz this group will be all over it with all kinds of input, make additions/deletions after a few rounds...or we can JUST DO IT, get it done, then offer it out to all. Keep me posted, send me a draft when it happens (have written too much for too many years to not allow for 'the' happening with writers)!! LOL...great idea Nancy, very proactive, something that this site needs sometimes is something for people to work on and feel more of a part of rather than just sharing our "WG" info...who knows, maybe you've got the next big thing in medical relations with docs and patients...!!!!!!!!!!!!!!!!!!!!!!!!

[Al]

Ditto ditto...LOL...sorry, couldn't resist your double send there! Anyway, YES, big yes...this may be a worthwhile project Nancy...and once you've written a draft, send it to those whom you would think would participate, and/or, post it on here somewhere where all can read and edit or make suggestions at least...I wouldn't open it to editing just 'cuz this group will be all over it with all kinds of input, make additions/deletions after a few rounds...or we can JUST DO IT, get it done, then offer it out to all. Keep me posted, send me a draft when it happens (have written too much for too many years to not allow for 'the' happening with writers)!! LOL...great idea Nancy, very proactive, something that this site needs sometimes is something for people to work on and feel more of a part of rather than just sharing our "WG" info...who knows, maybe you've got the next big thing in medical relations with docs and patients...!!!!!!!!!!!!!!!!!!!!!!!!

Let us know what you come up with--I'll sign on!

Al

[annekat]

I agree, great idea. More power to you and us, Nancy.

Anne