Presentation with Vision loss

[Middlesista]

Just wondering if anyone has presented with vision loss? Also a correlation wth a hearing loss sometimes prior?

i am reading so much about the hearing loss that I think I must have had a GPA situation going On back then that was somehow made to slither back into my body when I was treated with a steroid taper two years ago. It was not recognized or,diagnosed as GPA at that time. It did not slither back quietly however since lung damage occurred and issues with sinuses - which I never had before and which I am dealing with now. Although I will,say I was not overly sick and working and living my life

[Birdie]

Just wondering if anyone has presented with vision loss?

I have vision issues but they are prednisone related. I've hear of Wegs causing issues behind the eyes, like a tumor growing and pressing on the eye. In reality, granuloma can easily occur very quickly in any soft tissue.

[MaxD]

I didn't suffer vision loss, but did develop scleritis - and yes, lots of ear infections leading to some hearing loss and dysfunctional eustachian tubes (patulous). The scleritis went away with the prednisone, but the decreased hearing and eustachian dysfunction are permanent. All this would have counted as limited GPA, but the fact that I also had Bell's palsy before diagnosis meant that the GPA had attacked the nerves so it was treated as a severe case. The CT scan of my head (when the ENTs didn't suspect GPA) showed inflammation all over.

It could well be that the GPA affected your ears first, but that the steroids slowed it down long enough and when it came back, it was more extensive.

By the way, GPA does cause uveitis, and perhaps that is what had your opthalmologist concerned? In case you're interested, I believe there are uveitis experts listed on the VF site.

The trouble with GPA is that there is a very small network of docs who treat lots of GPA patients, and many who see only a handful in their careers. I'm blessed that the rheumatologist and ENT specialists I see have shared several hundred GPA patients in their careers.

[debra]

Middlesista,hi its Deb,the one who warned you about the mickey mouse club... Time to get serious,although I was with the club. I presented with scleritis,think doc called uvetitis? Spelling? Anyhoo,ya in my right eye,treated aggressively with pred eye drops every waking hour,then slow taper down. I was at eye doc more thaat home... My vision was changing so rapidly that it was crazy... Big clue with,this as its rare and serious. Eye doc was the first to say this is autoimmune,and see you're doctor. All my symptoms started at the same time as the eyes. My eyes are always changing,vision wise. My story is complicated so won't get in to that but I'm left with a granuloma behind my right eye that make it look like it protrudes slightly forward. I forget what its called. I have pain in my right eye,then goes to the other then both. Some days ok,some not,but I'm not treated so you're case will be very different... My eyes r blurry sometimes,other times not so bad,but distance is a hard one for me.... I hope this can help u some what..... I wish u the best! This suckey sickness..... Deb.

[annekat]

I have double vision from sinus bone erosion under the eye sockets. So more of a mechanical problem, and it took a couple or more years to develop, as sinus erosion progressed. As for the really serious eye involvement with Wegs, I have not had it. At dx, the area around my eyes had started to hurt and I had headaches, but that all cleared up immediately with treatment. I do have permanent hearing loss and eustachian tube dysfunction, but that is not related to the double vision. My first big presentation, 2.5 years before dx, was a severe, resistant ear infection, followed by many sinus infections and a diagnosis of allergies, and treatment with allergy shots, antibiotics, and short courses of prednisone. The double vision is a pain but somewhat manageable, some days worse than others. Driving is a bit challenging, I have to hold my head a certain way to see well, or close one eye. I try to just drive locally in familiar territory. I also have dizziness and occasional vertigo, which my ENT says may be Meniere's syndrome, but I feel it is likely related to the cumulative effect of all the ear problems I've had. This doesn't answer your question, as I had the ear stuff and hearing loss without the kind of vision loss or eye involvement you are talking about. But I do think I may have had stuff going on before the onset of the disease, and it's true that Wegs can "smolder", with symptoms coming and going and being mistaken for other things.

[Middlesista]

Birdie - They mentioned granuloma but also mentioned inflammatory changes of the optic nerve and not sure if tumor involved.

while being diagnosed they mentioned so much information and I had no sense of what was truly wrong but knew they wanted to start treatment quickly - of which I am grateful.

[Middlesista]

I think u are correct Max - initial limited that came back this fall with a vengance

eye folks told me all issues with vision were in optic nerve and no one mentioned uveyis

wow - several hundred GPA patients - that is helpful to say the least. I see the RA on Monday and I know I have to ask him if he is reaching out to others.

[Middlesista]

Thanks for the info Deb - as with you it was the optomologist that sensed the bigger picture and started this crazy whirlwind for me - and I have to be grateful that she did

do they feel that with treatment the granuloma behind your eye will dissipate?

[Middlesista]

right Anne - all that smoldering.....

sounds like you you are working so hard adjusting to all these changes u have had to deal with.

Funny - never had a sinus issue before - environmental allergies as a kid with allergy shots but nothing major up until now----

[debra]

Hi,Middlesista.. since I have not been treated,long story,no one has mentioned it. Crazy I know.but again long story. I thank God for that eye doctor who saw me on emergency seven pm,because not only did he say this is autoimmune,the color drained from his face. Then he excused himself for a couple minutes. Had that not happened and his reaction I would have never known,as I've never heard of this disease! At the same time this air popping thing,where it was like being under water,then later a pop,then normal. I had fluid coming out as well. Just recently I had this happen,only it didn't pop back,so slight loss in left air. I would think being treated would help shrink the granuloma.... Deb.

[debra]

Ear not air!!! Why I can't edit,I just don't get! I try,and it won't let me! So while the eye thing,the ear thing was happening... So sorry for typos! Deb.

[Middlesista]

yes Deb - starting your treatment to get rid of that granuloma!!!

[annekat]

Ear not air!!! Why I can't edit,I just don't get! I try,and it won't let me! So while the eye thing,the ear thing was happening... So sorry for typos! Deb. I was teasing. I don't comment on all your typos. I have let a couple of typos slip by myself lately, because I don't see them until after the post, and then haved skipped editing a couple times. For small things like it instead of in.

[Hal]

Middlesista,

I had both hearing and some vision loss when I was originally getting sick, and the inflammation was increasing. Neither the ENT doctor nor the Eye Surgeon were able to see the bigger picture and each treated their area-of-specialty. In the case of the ears they filled with fluid and I had to get shunts in my eardrums to drain them, and be able to hear again. The vision loss was quite worrying, and I assume it was the inflammation affected the optic nerve. Thankfully around then I got a proper diagnosis, and when we piled on the anti-inflammation drugs prior to the main treatment, things settled down.

Vision, hearing, sinuses, lungs, nerves, circulation and myriad other things suddenly going wrong for unexplained reasons - all very scary when it first hits you. Much of it due to inflammation IMO.

[Middlesista]

Hi Hal - your hearing and vision presentation, seems like docs are hard pressed to put it all together. My initial ENT felt it was all viral and even knowing my history of elevated inflammatory markers was not able to put it together and I did lose my hearing suddenly which goes along with SSNHL. It was the vision loss that started the road to diagnosis.

How are you doing now Hal?

[Hal]

Still got swelling and nerve damage that requires pain killers. It is what it is. :-)

[Middlesista]

Chronic pain is so tough and neuropathy can be so relentless. Have they used neurontin