What kind of eye issues should I worry about

**drz** · 12-30-2011, 03:19 PM

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** · 12-30-2011, 05:58 PM

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 · 12-30-2011, 07:37 PM

Originally Posted by Nancy-S

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** · 12-30-2011, 09:26 PM

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** · 12-31-2011, 02:41 AM

Originally Posted by drz

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** · 12-31-2011, 11:09 AM

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 · 12-31-2011, 01:16 PM

Originally Posted by 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.

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** · 12-31-2011, 01:53 PM

Originally Posted by Nancy-S

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 · 12-31-2011, 02:29 PM

Originally Posted by Dirty Don

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