Eye issues

[vdub]

Is there anyone on the forum who has had eye issues associated with wegs? If so, what symptoms and what has been the result? Thanks....

on edit: Oh yeah, I've already googled everything. I'm looking for personal experience. Thanks again....

[mishb]

I had scleritis and uveitis prior to starting meds. Thankfully pred drops and tablets cleared it up.

Every now and then the blood red eyes come back slightly, if I over do it or if I eat something that no longer agrees with me.

So for me, we are talking about being a vampire. My eyes were blood red, I couldn't stand the light, they hurt. They also felt gritty and would tear up.


What is happening vdub? Are you okay?

[renidrag]

The back side of my right eye hemorrhaged (?) and I have ongoing dry eye. Ophthalmologist said WG could be part of the problem however a lot of people that have dry eye don't have WG. The hemorrhage was definitely WG. Now going through testing for Glaucoma. Only really aggravating symptom I have now is a lot of random floaters, much more than used to.
Dale

[vdub]

What is happening vdub? Are you okay?
I'm not sure if everything is ok.... You know how we all become hypochondriacs when we are diagnosed with wegs..... :-)

I had my eyes checked only 6 months ago and I was 20/20 both near and far. But for the past couple months I've had some difficulty seeing, but difficult to describe. Certainly gritty as you suggest. Liquid tears don't seem to make a difference. Seeing is most difficult in the mornings, but gets marginally better as the day goes on.

Oddly, I hadn't looked at them to see if there's any blood. I guess that would probably be the first sign if wegs related. Thanks, guys!

[Pete]

Are you on the north side of 40?? Presbyopia could be setting in. Whatever it is, I hope it's easily treatable.

[drz]

I had scerlitis too before my Wegs was finally diagnosed. I know it was Weg related since I had several other symptoms of Wegs that disappeared once I was treated for Wegs.

Any change in vision usually warrants a good eye exam since something else might be going on. It might be developing cataracts which is common with age and steroid use, dry eyes which can relate to having Wegs and our meds we take, and other things that need to be diagnosed.

[vdub]

Totally north.... 64.... :-) I should probably set up another eye appointment if things don't change in the next few weeks.

[drz]

Totally north.... 64.... :-) I should probably set up another eye appointment if things don't change in the next few weeks.

I was advised at my first follow up visit after my treatment for Wegs to find a good eye doctor that will see you immediately if you notice any change in your vision. His words were since you lost your hearing to Wegs we want to be sure to try keep your vision so find a good eye doctor that will see you quickly if you notice any change in your vision. I would get seen soon if I was having a concern about changes in my vision. I have had some questions about my vision and did have cataract surgery on both eyes and also some treatment for dry eyes.

[Thinker]

I was diagnosed with anterior uveitis in my left eye just prior to my WG diagnosis. Basically my iris became frozen and the pupil would not constrict or dilate. My symptoms were severe redness, blurry vision and eye pain and I was treated with steroid eye drops for a month or two. I had asked the ER doctor about my eye during one of my trips to the ER just prior to my diagnosis and he did not feel it was anything to be concerned with. I went ahead on my own and made an appointment with an ophthalmologist and was glad I did, as they were very concerned about my eye. Apparently it can progress to a point where you can lose your vision. My ophthalmologist has told me that if I have any similar symptoms in my eye to call and they will work me in to see me that same day.

I'm not having any more symptoms now but do notice that it seems more sensitive to dryness than my other eye. I've had dry eyes for several years and use the artificial tears and sometimes have to switch to the more gel type liquid tears, especially in the winter when the air is drier.

I definitely understand about being a hypochondriac. I was having left eye pain and a gritty feeling a couple months ago and was pretty sure I had just scratched my cornea, because my vision was Ok and no severe redness, as I have done that in the past, but I called my ophthalmologist's office and talked to the resident doctor just to be on the safe side. I felt better after talking to them, and they did indeed tell me that I could come in that same day if I wanted to and they would check it. She told me to switch to the gel type tears for awhile and it did clear up on its own, although it did take about twice as long as in the past. I guess related to slow wound healing as a side effect of immunosuppressive drugs we take.

[Debbie C]

I have been having problems with my eyes the last few weeks. My sight is getting blurry,but I just figured it was my sinuses. But it is not getting better so I have an appt. tomorrow with my opthalmologist. I will let you know the outcome. You should make an appt. also vdub..you never know with this crap and you don't want to wait to long.

[mrtmeo]

My mom has MPA, but in the beginning, she had a gritty feeling in her right eye.
Her eye felt like she had something in it when the ulcer formed.
This all happened within a month, so don't let it go.

She eventually, had to use prednisone for her eye and was diagnosed with Peripheral Ulcerative Keratitis (PUK).
The pred worked until she had the rituxan which made it flare thru the roof and her opthamalogist gave her cyclosporine (Restatis) with pred drops.
They use a blue split light to see autoimmune issues going on in the eye, so it is best to see an opthamologist before damage is done.

[Debbie C]

I'll have to write that down and ask him tomorrow about the blue light "special "

[JeanMarie]

Vdub,
OK here's my experience with uvietis. My first episode
happened right after I was diagnosed with wegs. Really painful, red
eyes. I spent the weekend sitting still with my eyes pretty much
shut. It hurt to move my head. I didn't think the emergency room
would be much help—around here they don't call in an
ophthalmologist unless you've gone blind. You said you've already
googled it so I'll just stick to experience. Monday morning I went to
my ophthalmologist who diagnosed an infection. It took him a few
weeks to realize something else was going on. Eventually he referred
me to a doc who specialized in these diseases. That doc is now
semi-retired & he moved to Fla so I found another not too far
away. I live in the suburbs of NYC & I have only found those two
doctors near me. These are very rare diseases & a doc in private
practice isn't going to make a living just treating iritis, scleritis
etc. If I didn't have the doc I found now, I would have to go into
NYC for treatment.

I have not had an episode as bad as that first one, mainly because
I now know what to expect & what to do. If I wake up with red
eyes, I get myself to the doc asap. Uvietis is treated with drops –
pred forte & Durezol are the most common. I have a prescription for durezol that I
can fill if my doc isn't in. He tells me it won't hurt to use it for
a few days even if I haven't seen him. That's the thing though, you
really can't tell what you have by yourself. Painful red eyes can be
uvietis, scleritis, episcleritis or maybe something else.

I will say that I've never had an episode unless I was in the
middle of a flare or one was on its way. Also, though standard
treatment is drops, if you have a flare & are treated with oral
pred you may not need the drops. The oral drugs will get it under
control. Still, these are dangerous diseases & you need to be
under the care of an ophthalmologist who is familiar with them.

I also have dry eyes, I think that's pretty common & not
related to wegs. I use an over the counter drop under the doctor's
instruction. Again I don't recommend self treating, see what the doc
tells you first.

And finally, uvietis can be mildly active without you having
symptoms. You need fairly frequent office visits to make sure
everything is OK.

I hope this helps, feel free to pm me if I can give you any other
info

Be Well!!

[NikkiNicole]

I constantly feel like there is something in my eyes that is Weg's related because there is constant problems with them. But, I go to the opthamologist and she's like "oh its a little inflamed but you're fine". Wait ... what? When I have my contacts in, they itch and turn red. When my contacts are out, they itch. They burn, they hurt, they throb. Sometimes they are very red when I look in the mirror, not like blood red but just red. Sometimes, I look at something and they are blurry at first and then clear up. It's whenever I move my eyes. It's like they take a second to catch up.
But, as with everything in my life, the doctors like to tell me I am crazy and send me on my merry little way.
I do hope that you find some relief soon.

[Thinker]

Just wanted to add if you are using steroid eye drops you need to be under a doctor's care and they need to be checking the intraocular pressure of your eye. They can cause increased pressure and glaucoma in some individuals.

[mrtmeo]

Totally north.... 64.... :-) I should probably set up another eye appointment if things don't change in the next few weeks.

You could set an appointment now, because you can always cancel if it goes away, but it can sometimes be hard to get in.
However, my mom's opthamologist is usually pretty good at getting her in last minute.

[sbeach78]

I still have blurred vision in both eyes and the doctor said its caused by the oral pred. It has improved just a little since they have dropped my pred. dose.

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[godgirl]

My first visible symptom was scleritis. I've always had eye issues with all this.

When I have a bad day with all this, they will be blurry and tire easy. They will also ache behind the eye, in the socket. Sometimes if I'm worried there is inflammation, I'll close my eyes and press gently on my closed eye. If there is any pain in the actual eyeball, there's inflammation. (At least for me). Another indicator of inflammation for me is that they will feel like they're not working together. That's really hard to describe.

I also have severe dry eye. Doc says they see it a lot with auto immune disorders. I use Systane overnight gel as well as Systane Balance and Systane Ultra during the day. I find the overnight gel helps immensely. It's weird at first, but it's wonderful.

Jen

[morningsunshine]

Hi there, to chime in with eye experience:

I had scleritis when I was first diagnosed.

I got it again, and when my normal ophthalmologist was looking, she got suddenly worried and sent me straight to a retina specialist. Turns out I have a "retinal vein occlusion", which to me (looking at the pictures on the screen) looks like one of the veins at the back of my eye exploded. They think that it associated with either Wegener's or prednisone and have monitored it for months, but it has not change.

I also have a cataract from prednisone, which makes my vision a little blurry.

This study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1857486/) says that "Ocular manifestations occur in 30–50% of [Wegener's] patients".

Good luck!!

[Alysia]

I had red eyes when I was smoldering (years) without infection though. after the rtx my eyes became clear. BUT long use of pred can cause blurred vision, (I sometimes have) and cataract.
my sweet Phil had issues with his eyes, was diagnosed with this one: http://www.geteyesmart.org/eyesmart/diseases/central-retinal-vein-occlusion-symptoms.cfm it was not clear if it was wg related or not. he got avastin injections into the eye. he suffered from floaters in the vision. I also have them from time to time.
Phil's brother just wrote to me few days ago that he saw an article about rare eye disease which can be diagnosed if the eyes are becoming yelllow when you take a photo. he saw that I posted on facebook a picture of Phil in which his eyes are glowing. I read about that disease which sounds similar to wg, issues of blood vessels in the eye. this is the link that his brother sent me:
http://boredomtherapy.com/facebook-saves-girl-vision/?as=6023041630884
I wonder if one can take a picture and see if his eyes are glowing ?
I would say that the glowing eyes of my sweetie was part of his shining spirit... I miss him... I will post the picture of him that made his brother sent me that article, in his thread.

[vdub]

It sounds like I'm in good company! Thanks all for the many responses. I guess I'd better get it looked at. I woke up this morning aching all over, so maybe something is going on. Its been a long time since I've had a flare. I don't recall anything quite like this, but wegs seems to manifest itself in a lot of different ways.

[Debbie C]

Well I went to the opthamologist (sp ?) today he gave me a good check up. He wasn't going to dialate my eyes but he said since I have wg he wants to get a good look at things ...UGH! I hate having them dialated. But all was good. He said nothing is wrong and no change since last visit 6 months ago.His daughter ,which is also a dr. there said I can try using artificial tear drops if my eyes get dry.So I don't know why they are blurry and either do they ????!!!!!

[vdub]

Good news! But, a bummer they can't dx the blurriness. I guess I'd better get an appt and be checked, too.

[mishb]

In the last 4 month my eyesight has been failing.
They are very blurry in the mornings and get better towards the middle of the day and then worse again at night.

I did have them checked by the optometrist who said - you are nearly 50, time for glasses
He also said - I don't think it has anything to do with your condition, I think you eyes are just getting older :crying:

I did get the glasses and it does help with the vision - a lot
I am still waiting for my appointment date and time with the opthamologist, so he can check them. I do take a drug called plaquenil, and that can affect your eyes. Therefore, I just want to be sure.

[vdub]

you are nearly 50, time for glasses
Hmmm, yeah, that could be the issue. I'm about 64. Up to this point, I haven't had to wear glasses or even cheaters. I did have a general vision test about 4 months ago. They dilated the eyes, looked in them, puffed the air on them and stuff. Told me I was still 20/15 in one and 20/20 for the other on both far and near sight. I have been very fortunate in that regard. I hate to think the eyes are heading south, but maybe its time.

[mishb]

You have done very well to get this far without the need for glasses.

For me, and also for you I think, it just doesn't seem like the correct diagnosis (old age) because it has come on so suddenly.
One minute I can see perfectly and the next I'm struggling :unsure:

[vdub]

Old, eh? Now that's just the damnest dx I've ever heard.... :-)

[mishb]

:tongue1::tongue1::flapper:

[vdub]

When I was at the checkout and ready to pay for my groceries the cashier said, “Strip down, facing me."

Making a mental note so I could complain about this security rubbish, I did just as she had instructed.

After the shrieking and hysterical remarks finally subsided, I found out that she was referring to how I should position my banking card.

Nonetheless, I've been asked to shop elsewhere in the future.

They need to make their instructions a little clearer for seniors.

I hate this getting older stuff.

[Pete]

When I was at the checkout and ready to pay for my groceries the cashier said, “Strip down, facing me."

Making a mental note so I could complain about this security rubbish, I did just as she had instructed.

After the shrieking and hysterical remarks finally subsided, I found out that she was referring to how I should position my banking card.

Nonetheless, I've been asked to shop elsewhere in the future.

They need to make their instructions a little clearer for seniors.

I hate this getting older stuff.

Thanks for a good chuckle to start my day!!! ��

[Alysia]

blurriness can be the result of pred.

[Debbie C]

The dr.told me yesterday that the pred had nothing to do with my blurriness and that by vision was good.All I use is cheaters once in awhile while on comp. or reading. Today I am fighting a cold...was up half the night coughing now my chest hurts from it and a sore throat. If its not one thing its another. UGH !!!!

[isi14]

Hi[emoji4]
I have cataract in my right eyes and i have diagnosticaded it 8 months ago.My doctors told me that this had nothing to do with the desease,and maybe is smth borned.i have made controls and they told me that for 6 month they have to see if the catarct is thickened and i can take away it.i did the visit but nothing was chainged,the cataract wasnt thick.i am sceptic about this because i have just 23 year and to have cataract is a little strange.Sorry about my english[emoji111]️.I hope you understand me[emoji4]


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[drz]

Hi[emoji4]
I have cataract in my right eyes and i have diagnosticaded it 8 months ago.My doctors told me that this had nothing to do with the desease,and maybe is smth borned.i have made controls and they told me that for 6 month they have to see if the catarct is thickened and i can take away it.i did the visit but nothing was chainged,the cataract wasnt thick.i am sceptic about this because i have just 23 year and to have cataract is a little strange.Sorry about my english[emoji111]️.I hope you understand me[emoji4]


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Prednisone or similar steroids can cause cataracts to form at a any age.

[isi14]

I think so!But my doctors told me that my cure was short just next 8 months it happened to me,and thay told me that maybe the cure can help on cataract but according to them i have had it before.


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[jakekell]

I have had inflammation in my left eye many times, in fact going back to eye doc tomorrow for a re-check. I went deaf during the onset of Weg's and then soon after that the first eye issue began. They gave me drops Lotxax, not sure of the spelling. The gifts this disease keeps giving us wants to make me scream sometimes. We live in Naples FL during the winter, this new eye doc makes my 3 new doc due to issues.

I would say see an eye doc as soon as you can.

Mary

[vdub]

Left eye is really giving me fits tonight. I suppose I should make an appt. I think I have to have a referral to be covered by insurance. It has to be a medical issue vice a normal eye examine. The VA gave me my last check up. They do good work contrary to what the news says. At least, I've been treated well. But it was an optometrist and I probably should see an ophthalmologist.

[jakekell]

Good idea, I only go now to an eye doc not an optometrist. Medicare has been paying for my visits as there is an issue. I have also had flashing lights in that eye as the inflammation caused some of the gel to break lose so went right away for that.

[annekat]

blurriness can be the result of pred. I'm hoping if I can get lower on pred, some of my vision issues such as blurriness and double vision will improve. Although an ophthalmologist thinks the double vision is caused by bone erosion under my eye sockets, as shown on an MRI. I'd just like to see what no pred, or only 5mg., might do for me! I'm stuck on 11mg. because I've been very conservative with tapering, in order to avoid a flare this winter. Will see the doc for results of my latest blood work tomorrow.

[Pete]

I'm hoping if I can get lower on pred, some of my vision issues such as blurriness and double vision will improve. Although an ophthalmologist thinks the double vision is caused by bone erosion under my eye sockets, as shown on an MRI. I'd just like to see what no pred, or only 5mg., might do for me! I'm stuck on 11mg. because I've been very conservative with tapering, in order to avoid a flare this winter. Will see the doc for results of my latest blood work tomorrow.

Several years ago, my wife was on a short course of pred to relieve some sort of inflammation (not related to an autoimmune disease). She reported double vision. Fortunately, the double vision went away after a few weeks.

[jakekell]

I'm hoping if I can get lower on pred, some of my vision issues such as blurriness and double vision will improve. Although an ophthalmologist thinks the double vision is caused by bone erosion under my eye sockets, as shown on an MRI. I'd just like to see what no pred, or only 5mg., might do for me! I'm stuck on 11mg. because I've been very conservative with tapering, in order to avoid a flare this winter. Will see the doc for results of my latest blood work tomorrow.

Annekat,

How long have you been on 11 mg of pred? I am now down to 2 mg by cutting 1mg tabs in half and then going down very slow. I hope you can get down as that isn't fun at all, hope your blood work is good.

Mary

[annekat]

Several years ago, my wife was on a short course of pred to relieve some sort of inflammation (not related to an autoimmune disease). She reported double vision. Fortunately, the double vision went away after a few weeks. That's very interesting, Pete. I'm not even sure that most docs know enough about pred to know all of its possible side effects. I have read on older threads here about pred causing double vision, too, and believe I've read elsewhere online that it is possible. My eye doc and ENT may be right about the bone erosion under the orbits, but I still hold out hope that it could at least improve when I'm off pred, or at a lower dose. I've heard it weakens muscles, and I don't know why that couldn't include that eye muscles used for the two eyes focusing as a unit. The eye doc said those muscles don't really weaken, but then, he may not really know pred. Thanks for sharing that.

[annekat]

Annekat,

How long have you been on 11 mg of pred? I am now down to 2 mg by cutting 1mg tabs in half and then going down very slow. I hope you can get down as that isn't fun at all, hope your blood work is good.

Mary Thanks, Mary. This time around, I've only been on 11mg. for a week and a half or so. I've been tapering from 15mg. since the end of a flare about a year ago, where I'd gone up from 7.5mg to deal with the flare. I was tapering down OK but the holidays and winter became stressful and I wanted to avoid having another winter flare, so I slowed down. I had planned to get to 10mg. by my doc's appt tomorrow, but haven't been feeling that great lately, so have stayed with 11mg. Once I find out the results of the latest blood work, which will be tomorrow, I'll know whether I should stay at that level or push harder to taper more. I'm not expecting any drastic results from the lab., but my last blood work showed a normal inflammation level and I'm suspecting it could have gone up a little by the way I feel. Not like a real flare, maybe, but just a smoldering one. We will see, and I'll let you know.

[Realpro325]

I have had uveitis and almost lost my vision in my left eye. Make an appointment with an eye dr ASAP.

[drz]

I saw an optometrist when i had scleritis shortly before any doctors figured out I had Wegs. He treated it very successfully. My ophthalmologist had just quit so he was the only option. The optometrist also speculated I might have a systemic disorder of some kind causing my Weg symptoms and was the only doctor of the dozen plus I saw while searching for some explanation of my Weg symptoms that even got close to guessing what was going on when the Wegs started attacking my body. The next best guess came from my podiatrist who said some thing else was causing my pain but no MD even came close to recognizing the symptoms of Wegs. It was finally recognized only after some severe complications (near death) and the help of a consultation with Mayo and their labwork.

An optometrist cannot do surgery but in my experience they often do a more thorough exam and can treat most eye problems. Medicare will pay for medical diagnoses but not refractions for getting glasses.

When I was told I had to find a good eye doctor that would see me quickly if I developed any vision changes or possible signs of Wegs in my eyes to prevent loss of vision it was an optometrist who promised to do so. She said she could get me into an eye surgeon immediately too if it was ever needed and I beleive that would be the case since I am sure any good ophthalmologist would respect their assessment.

[BookNut]

i have not read this whole thread, so forgive me if this is repetitive. My husband is asthmatic and, although he was not on prednisone very long, it did result in glaucoma. He used an inhaled steroid now to keep his asthma under control. fewer side effects. I wish they worked for me.

On pred right now and can not sleep. SO annoying!

[JeanMarie]

OK, I'm going to nag a little. Made that appointment yet???

Please, please, please don't wait any longer. I found this list, maybe it will help: United States | Uveitis.org | OIUF (http://www.uveitis.org/patients/list-of-specialists/united-states)

[vdub]

You mean me, Jean? I haven't, but yes I should. It's going to have to be a referral and my PCP recently died, so I'm in a bit of quandary at the moment. I think my rheumy good do the referral. I have an appt with him in June, but I should do something before then.

[hrnn]

not necesarily the case nor trying to get you to panic, but my wife had a granuloma pushing her eyeball out of the socket (not as visible as it sounds, but it describes what was happening). she had blurry vision at first and she was temporarily blinded at one point. after an initial pred shock it all got back to normal. still her WG was acting up so when they lowered her pred dose the granuloma started pushing again and this time the manifestation was blurry vision (because the eye wern't aligning properly to form an image).

luckily she got alright but losing her eye could have been an outcome.

[vdub]

Soooo, I got the appt, but its not until mid-apr.

[Debbie C]

WOW hrnn,that's scary about your wife. I never knew that could happen.:w00t:
Vdub,I am glad you finally got an appt,too bad you have to wait so long. You should see if they have a cancellation list.

[drz]

Soooo, I got the appt, but its not until mid-apr.

Do they know you have Wegs and how fast it can destroy one's vision if it is the culprit causing your problem?

[cjhnsn29]

Yes you are not the only one with eye problems, if I look at computers, TV. My eyes get blurry and I getting swallowen eye lids and pressure. It is not all the times. I put cold packs on and leave the lights off.

[Randy]

I went to the optometrist about 18 months ago for blurry vision. Macular degeneration runs in my family and I was afraid that might be my problem. Turns out I had a hole in the Macula of my left eye. Could be the Wegners or it could just be a result of aging. The doctor couldn't say for sure. I got the hole fixed, but now I have a cataract forming. The doctor wants to wait about six months before removing it to make sure my eye has fully healed from the first operation.

[jakekell]

I have been fighting inflammation in my left eye, going to see the eye doc Tues again. I went last week and my pressure was up in that eye so need to be careful to ignore anything with the delightful disease.

[drz]

I was advised at my first follow up visit after my treatment for Wegs to find a good eye doctor that will see you immediately if you notice any change in your vision. His words were since you lost your hearing to Wegs we want to be sure to try keep your vision so find a good eye doctor that will see you quickly if you notice any change in your vision. I would get seen soon if I was having a concern about changes in my vision. I have had some questions about my vision and did have cataract surgery on both eyes and also some treatment for dry eyes.

My left eye became sore over the weekend. I had a sore red spot that looked much like a burn or birth mark near the eye along with apparent inflammation of eyelid. So i went to the walk in clinic and they gave me some ointment that contains steroids and antibiotic. (TobraDex) It reduced the inflammation of the eyelid and sore spot next to eye but left eye still feels sore, with a mild pain, sort of dry and irritated so I will be calling my ophthalmologist about being seen now. My inflammation markers were back in normal range two weeks ago but my ANCA score had gone up to borderline range. I have no other symptoms yet suggestive of other increase GPA activity, just the sore eyes.

Because of my diabetes and glaucoma I usually am seen regularly by an ophthalmologist every three or four months. I was scheduled to be seen in three weeks but feel need for a sooner appointment now due to eye discomfort.

[jakekell]

My left eye became sore over the weekend. I had a sore red spot that looked much like a burn or birth mark near the eye along with apparent inflammation of eyelid. So i went to the walk in clinic and they gave me some ointment that contains steroids and antibiotic. (TobraDex) It reduced the inflammation of the eyelid and sore spot next to eye but left eye still feels sore, with a mild pain, sort of dry and irritated so I will be calling my ophthalmologist about being seen now. My inflammation markers were back in normal range two weeks ago but my ANCA score had gone up to borderline range. I have no other symptoms yet suggestive of other increase GPA activity, just the sore eyes.

Because of my diabetes and glaucoma I usually am seen regularly by an ophthalmologist every three or four months. I was scheduled to be seen in three weeks but feel need for a sooner appointment now due to eye discomfort.

Drz,

I finally got my eye settled down after using Lotmax. I am finding if I don' keep my sinus cleaned out good my left eye flares up, ENT said possible to happen.

[annekat]

All this talk of eye issues makes me concerned when docs tell us it is nothing, we are fine, as was reported by Nikki above. My doc would probably say the same thing if I just said my eyes were watery or sometimes red. When I was in the hospital overnight right before dx, I had very red eyes, and no one had a comment about it, or a few other things like headaches and a tightness around my eyes. They were focusing on my lungs. The eye issues did improve with treatment.

However, there was a small purplish-red dark spot in the crease between my eye and nose, and a couple weeks after dx and beginning of treatment, a hole in the skin developed there. This was tissue death, necrosis, from Wegs. My meds were increased and that stopped its progress. But the hole is still there. It is not noticeable because it is in the crease, and I wear glasses. It is right over the ethmoid sinus, where the tiny bones have eroded, and near the tear duct opening, and my ENT says surgery to close it would be tricky because of these things. This has little to do with the eyes, really, but you mentioned a dark spot, drz. It sounds like you don't have a big increase in disease activity, so I hope nothing like this will result from your dark spot. My eyes were sore and red around that time, but the spot itself was not painful, that I remember. But your describing it as looking like a burn or birthmark did ring a bell.

[woz]

My eyes have been a problem since the very start, They used to freak out people who looked at them as they were blood red ( when first diagnosed), since then they have got better, but water badly every time I cough or sneeze. When I first went on azathiaprine, my eyes were sore and red for a while, but got used to it, I have recently had to increase my dose of azathiaprine, which has made my eyes sore and red again, they say what dosent kill you makes you stronger....... Lets hope so. I see my ophthalmologist regularly, and my eyes are good so far.

[drz]

My left eye became sore over the weekend. I had a sore red spot that looked much like a burn or birth mark near the eye along with apparent inflammation of eyelid. So i went to the walk in clinic and they gave me some ointment that contains steroids and antibiotic. (TobraDex) It reduced the inflammation of the eyelid and sore spot next to eye but left eye still feels sore, with a mild pain, sort of dry and irritated so I will be calling my ophthalmologist about being seen now. My inflammation markers were back in normal range two weeks ago but my ANCA score had gone up to borderline range. I have no other symptoms yet suggestive of other increase GPA activity, just the sore eyes.

Because of my diabetes and glaucoma I usually am seen regularly by an ophthalmologist every three or four months. I was scheduled to be seen in three weeks but feel need for a sooner appointment now due to eye discomfort.

My regular ophthalmologist was gone for the week so I was seen by an optometrist who works in her department. She gave me a thorough examination and even took the time to do the things that were scheduled to be done in three weeks by my regular ophthalmologist so i wouldn't have to come back again so soon. I really appreciated her extra effort. The two hours I spent there yesterday saved me another trip which is an hour drive away.

She found no signs of vasculitis inside the eye and diagnosed my sore eye as Conjunctivitis which is one of the most common nontraumatic eye complaints resulting in presentation to the emergency department (ED): 3% of all ED visits are ocular related, and conjunctivitis is responsible for approximately 30% of all eye complaints. This term describes any inflammatory process that involves the conjunctiva; however, to most patients, conjunctivitis (often called pink eye) is a diagnosis in its own right. As with any mucous membrane, infectious agents may adhere to the conjunctiva, thus overwhelming normal defense mechanisms and producing clinical symptoms of redness, discharge, irritation, and possibly photophobia. I copied this from another medical site, but firmly believe that having a suppressed immune system made me more susceptible to this along with many other infections and problems I often experience. Wegs is the gift that keeps on giving in o so many ways.

I got some TobraDex drops to use for next week and eye feels much better. The drops are much easier to use than the ointment. The red spot touching the eye disappeared after using the ointment for a couple days. I still have some slight irritation and watering of one eye but hope that will clear up in a couple days too. The pain I felt inside or behind the eye also seems much better. The visit also alleviated my anxiety and worry about losing vision from a Wegs attack.

[jakekell]

My eyes have been a problem since the very start, They used to freak out people who looked at them as they were blood red ( when first diagnosed), since then they have got better, but water badly every time I cough or sneeze. When I first went on azathiaprine, my eyes were sore and red for a while, but got used to it, I have recently had to increase my dose of azathiaprine, which has made my eyes sore and red again, they say what dosent kill you makes you stronger....... Lets hope so. I see my ophthalmologist regularly, and my eyes are good so far.

woz,

That is how my eye's were, I looked scary. The Lotmax drops have kept it in check pretty much, but once in awhile like the passed couple of weeks it got away from me. I got it back in check now.

[Psyborg]

So...just curious. I've not historically had issues with my eyes, but over the last few weeks I started getting weird pains. Kind of like a needle stick in the white of my eye. Hurts for a few minutes then just irritated for an hour or so after. Can see some blood shot area afterward, but certainly not blood red like other's described. It's always in the white o the eye, and is happening enough to make me question what's going on.

[Pete]

So...just curious. I've not historically had issues with my eyes, but over the last few weeks I started getting weird pains. Kind of like a needle stick in the white of my eye. Hurts for a few minutes then just irritated for an hour or so after. Can see some blood shot area afterward, but certainly not blood red like other's described. It's always in the white o the eye, and is happening enough to make me question what's going on.

Hi Bob,

You probably ought to have an ophthalmologist take a look see. Hope it's nothing serious.

[Psyborg]

I was just at Optomitrist and he said the eye looked fine, but this is more in the white than inside where he was most concerned. Dropped DR Villa Forte an email to see her thoughts.

[JeanMarie]

Just my 2 cents, but for us weggies, I really think we need to see an ophthalmologist & hopefully one with experience with these diseases. I don't think an optometrist is that good an idea. My 1st ophthalmologist treated me for conjunctivitis for a few weeks before he finally figured out something else was going on & I thought he was a pretty good doctor. He probably is but he didn't know anything about the stuff that happens to us. Optometrists don't have the same training.

[annekat]

Optometrists are not MD's and ophthalmologists are. The latter have been to medical school and theoretically would have learned about autoimmune diseases including vasculitis. I've been to an ophthalmologist who has had one other Wegener's patient and knows what it is and what it does. It would be preferable to see someone with more WG experience, but he did a good job with me.

[drz]

Optometrists are not MD's and ophthalmologists are. The latter have been to medical school and theoretically would have learned about autoimmune diseases including vasculitis. I've been to an ophthalmologist who has had one other Wegener's patient and knows what it is and what it does. It would be preferable to see someone with more WG experience, but he did a good job with me.

I have seen both kinds for several decades due to long history of extreme near sightedness, glaucoma, and cataracts and history of diabetes which also causes many eye problems.

An optometrist and podiatrist, neither MD's but allied medical fields, were only ones to even guess that I had a systemic disorder going on while I saw a dozen doctors trying to chase down the myriad of Weg symptoms before I finally got diagnosed much later.

My regular ophthalmologist had just quit her practice so i saw an optometrist in her department when I came down with scleritis as my third Weg symptom. He treated it successfully. My last exam for eye problems was also done by an optometrist and her exam seemed more thorough than what my regular ophthalmologist usually does and I believe she is very good and my first choice, but she was away on vacation that week.

When I needed laser treatment or cataract surgery in the past it was done by an ophthalmologist who is either a MD or DO. When I need a refraction for eyeglasses i opt for the optometrists since they have seemed to do better job for me.

When my eyes hurt I will see who ever is available since both seem equally capable of assessing my situation and prescribing the treatment I need. If I need an ophthalmologist for some special treatment the optometrist can get access to one a lot quicker than I can and is in a better position to assess the skill of who they send me to see.

I think the main thing is find doctors you trust and to see them regularly. I am seen every four months for check ups.

[annekat]

I've had extreme nearsightedness all my life, but my eye problems aren't as bad as yours, drz. I think you are right about finding someone you trust and you feel is competent, regardless of their title. I go to an optometrist for a glasses prescription and the routine tests that they do. I probably would not have gone to the ophthalmologist if I hadn't been struggling with double vision, and my ENT referred me to him. He knew enough to know that the problem could be caused by erosion of the sinus bones located directly under the orbital sockets. I wouldn't expect an optometrist (or even all ophthalmologists) to know that Wegs causes that kind of erosion. Anyway, he ordered an MRI, which indeed showed erosion there, and I took the disc to my ENT who confirmed that along with all the other bone erosion I already knew about throughout my nasal cavity. So, the two MDs sort of collaborated on that assessment. What I was told is that there are fat pads under the eyeballs, which sort of cushion them and keep them from moving around, but when there is bone erosion under them, they lose some support and may not be able to hold their positions well enough to work together consistently in focusing on an object. I am also holding out some hope that prednisone could be part of the problem, as testified to by some on here, and that it may improve when I'm able to taper to a very low level or quit. If I had any really extreme eye problems caused directly by Wegs, with actual disease activity in the eyes, then I think I'd need a more experienced doctor or two than any of the ones I have currently.

[Vickie]

HI,
My mom recently had a problem where the muscles in the left eye are not holding it in place....it caused EXTREME double vision. She has to wear a patch on one eye for a time period.
We are scheduled for a MRI and blood work. Anyone experience this? We have a lung doctor...we didn't know we needed a rheumonologist... is there anyone else mom should be seeing? It's been almost two years since diagnosis. She did the predin/cyc. and now predisone/metraxate (sorry about spelling..)
Any help is appreciated.
Vickie
** we are in the westside of Cleveland

[annekat]

Yes, she should see a rheumatologist, though I'm just seeing a pulmonologist, since I don't know for sure of any rheumies experienced with WG in my community. Some of them mainly treat RA, since it is so common, and have less occasion to encounter the more rare autoimmune diseases such as WG. However, you are in Cleveland, where there is the Cleveland Clinic, which has some of the top recognized WG docs in the world in its rheumatology clinic. People go there from all over the US and the world. I'm a little surprised that the doc treating your mom for WG all this time would not know of it and try to get her hooked up there.

Hearing about your mom's double vision is very interesting to me. I also have double vision. It may not be as severe as your mom's but is troubling and can be somewhat debilitating. I had an MRI, as discussed just above your post, which showed erosion of the sinus bones under the eye sockets, due to WG, and that was surmised to be what is causing my problem. But I have always wondered about the muscles that focus and hold the eyes in place. My ophthalmologist says these muscles do not generally weaken. However, he could be wrong, and may be overlooking what some on here have said, that prednisone can cause this weakening. If so, I'd think strength could be regained once off the drug. I won't really know until I get off prednisone or get it to a lower level. My eye doc did suggest I might consult with another one more experienced in WG and vasculitis. And prednisone might not be the cause in your mom's case. I'm sure that at the Cleveland Clinic there are likely to be all the docs you might need including eye docs, lung docs, ENTs, rheumies, nephrologists, etc., there would be some with significant WG experience, and they would work together as a team. Best wishes to you and your mom.

[Pete]

I second Anne's recommendation. If you want to see a rheumatologist at Cleveland Clinic, either Dr Carol Langford or Dr Alexandra Villa Forte (I see her) are among the best in the world. Also, there is a famous eye care center there. I'd start with the rheumatologist. They will handle the ongoing care of the disease, and will coordinate with the ophthalmologist.

When my wife was on prednisone (for another condition that no longer affects her), she had some double vision. Her ophthalmologist didn't solve the problem, but it cleared up after she got off pred.

Good luck!!

[annekat]

When my wife was on prednisone (for another condition that no longer affects her), she had some double vision. Her ophthalmologist didn't solve the problem, but it cleared up after she got off pred.

Good luck!! That, too, is very interesting to me, Pete and since you mentioned it on another thread, has given me hope that getting off pred, or reducing it to a very low dose, may help my double vision. It could be more than one thing causing it, and docs just don't always know!

[vdub]

BTW, I had my eye appt a couple days ago and all is well. The doc said I had some small issues with dehydration which was probably caused by some of the drugs I was on.

He has several wegs patients and he's seems really decent, so I'm scheduling to see him once a year. He said for all us weggies, if we are ever told we have "pink eye", then we should schedule an immediate appt, because its probably not pink eye, but bursting blood vessels.

[drz]

BTW, I had my eye appt a couple days ago and all is well. The doc said I had some small issues with dehydration which was probably caused by some of the drugs I was on.

He has several wegs patients and he's seems really decent, so I'm scheduling to see him once a year. He said for all us weggies, if we are ever told we have "pink eye", then we should schedule an immediate appt, because its probably not pink eye, but bursting blood vessels.


Scleritis and inflammation of the eyelids are two other eye problems often occurring with Wegs that result in red and sore eyes. I have had both and they usually respond to eye drops that combine antibiotic and steroid. But both warrant a peek inside the eye to see if there is any sign of wegs going on inside the eyeball since that could quickly affect vision. recent literature I read suggests 50% of us Weggies will have some kind of eye problem too. Dry eyes or watery eyes often result from our meds too.