eyes involvement ?

**Alysia** · 05-09-2013, 04:19 AM

Hi,
end of the story:
I asked again those docs who didnt answered me at first, (about their experience with WG) and they reply something about some experience. less vague but not very convincing.
somthing was strange because one said that he treated weggies who have eye involvement in the eye socket. does anyone here know about this ?
then I found that there is small department of eyes + RA & AI diseases, in hospital away from my home. I wrote email to the doc who works there. today I went to see her. it was long day (taxi + train + taxi X2) but this doc was wonderfull. she knew about WG. she checked me very carefully, almost an hour and half. she was kind and caring and professional.
the good news are that my eyes are O.K. no WG in my eyes, thanks god.
Im glad I found this amazing doc. I hope I will not need her, but if I will, she is the right person.
my "lesson": dont give up looking for the right doc...

**annekat** · 05-09-2013, 08:30 AM

Alysia, I'm so glad you finally found the right eye doc, one you feel you can trust. And also that you don't have WG in your eyes!

**mishb** · 05-09-2013, 10:33 AM

Thats excellent news Alysia and a lesson for each and every one of us........to try and find the right doc's, be pro-active in your care, and to not give up

Well done

**chrisTIn@** · 05-09-2013, 03:47 PM

Wonderfull news, Alicia!
Not only that you found a good, caring doc that was well worth the long trip,
but most of all, that she found no GPA-eyes involvement!
Congratulations.

Originally Posted by Alysia

Hi,
...one said that he treated weggies who have eye involvement in the eye socket. does anyone here know about this ?

I haven't heard (yet) of Wegs-involvement in the eye socket, but hey, there are small blood vessels in the eye socket too, I guess, so there could be involvement there also.
I guess Wegs-involvement can occur anywhere in the body.
Anyone?

**Barbara N** · 05-10-2013, 05:01 PM

I found a tear sack specialist and he was fantastic.NO more Slashing of the eyes he did everything with a size 20 needle and it works better than the scalpel.He could empty the whole side of my face when it flared up and got just huge and very painful. My eye Doc for the last 7 years or so, got me one night when I was in Emergency and he was on standby so they asked for his opinion. He was so shocked at what he saw and when he saw how many ophthalmologists I had seen he had me booked into the hospital right away. I had been blind for almost a year and all the other doctors could come up with was dry eye syndrome. When I woke up I had two new eyes and eye lids. The actual eye I think was just the lens and the cornea then all of the membrane from behind my eyes and around them and lastly the eyelids were replaced because there was too much damage to repair them. The membrane keeps getting destroyed around the eye and eye lid and I think that is the operation I have to have now. I'll tell you all about it next week when he has taken a look and sees what needs doing. I haven't heard of an eye socket specialist but there should be something similar because I am losing bone around the eye the whole, they say if they put a screw in the weak part that the chances of it disappearing are big and they were right because in one section the bone is so thin I don't think it will hold much longer. Animo a todos, Barbara I am off to hug my horse, nothing is so bad that a hug from my horse can't make it better,

**Barbara N** · 05-10-2013, 05:45 PM

Well done and great find. It really does pay to get other opinions. If I hadn't ,I would be sitting in bed a blind person. That is just not me. Because I live in the middle of no where, it is very had to find doctors or advice. The great doctors I have had from other parts of Spain stay in touch by e-mails with my doctors here. It is a big help they can tell me when it is really important and I should get to the hospital or something that just need a little rest or change in medication.

**Alysia** · 02-12-2016, 06:18 AM

I have Episcleritis now. The eye dr. Gave me drops. I got rtx 1000mg a month ago. Should I ask for more 1000mg ? I need my eyes...

**debra** · 02-12-2016, 06:45 AM

Alysia, weird cause my eyes are acting up again too... Now I need to add another to the top of my long list! Alysia, did they give you pred-forte drops? You need to give the drops a chance, but of coarse check with you're doc, on the additional rtx... These Golden eye drops, saved me! For a hundred thirty dollars for fourteen day supply, they kinda should... My advice on the drops, to you or anyone, is don't get the generic here! The pharmacist, I've known for many years, warned me about this, after the other pharmacy, walgreens said it doesn't matter! Yes it does! Because I then had a doctor say the same thing... The good pharmacist was at CVS... These guys, know there stuff... Wish I could see a pharmacist as opposed to these doctors, because they ate more helpful! Alysia, give the drops time, and try hard to relax, because you know what stress will do... Deb...