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View Full Version : Sudden Severe Dry Eye Symptoms Due To An Acute Infammation Of The Tear Glands



beeinformed
02-19-2010, 09:03 AM
Hello!

I had an acute, severe inflammation of my tear glands in which I lost seventy to eighty percent of my tear glands with a period of twenty-four hours. The symptoms included severe pain, tearing, redness, dryness, swollen upper lids and photophobia.

Until I had this acute inflammatory attack of the tear glands, I had very mild dry eye symptoms and have had to adjust to these changes in my eyes which occurred as a result of the damage done to my tear glands.

I would appreciate hearing from any of the members who have experienced similar symptoms such as mine. Thanks. :)

elephant
02-19-2010, 09:09 AM
I had eye pain for six years. Went to 8 or more ( can't remember) eye doctors and they all said blocked tear duct dry eye's. So they put my on cyclosporine for the eye ( restatisis). It helped my eye to be less dry.

JanW
02-19-2010, 09:13 AM
Never had any eye symptoms but am wondering whether any of you see an eye doctor who specializes in auto immune diseases and in what ways an eye exam should be different if you have WG.

elephant
02-19-2010, 09:23 AM
No, my new eye doctor is familiar with Wg but not an expert. He is really great! I can't complain. My WG even looked at my recent CT scan of my eyes (orbitals) and no sign of WG tumor.

Sangye
02-19-2010, 09:49 AM
I see a neuroopthalmologist regularly because chronic elevated intracranial pressure (a very rare complication of Wegs) affects my vision.

I also saw an opthalmic immunologist at JHU for a general evaluation. I don't have Wegs eye involvement so I don't need to go back to him. He's the Weggies Eye Guy at JHU. Too bad he has absolutely NO sense of humor. Can't appreciate the title I bestowed on him. :D

LilyPony
02-20-2010, 01:54 AM
My Weg has been, so I thought, contained only to one tear gland and mildly in the duct. I was told that I was probably the only person who ever has, and ever will, get it there but now I'm seeing I'm not! So glad I found this message board yesterday! When i flare up, tear production is hampered and eye is terribly dry. It feels like there's sand in it and won't get out. Eye drops help for a few minutes. My vision is always a tad blurry on that side from what they believe is pressure on the optic nerve, but when I get the dry eyes my vision also gets worse. I'm revving up the last few days for a big flare up and each day my eyes get dryer and vision gets worse. The only medication I currently take is bactrim and prednisone for about two months gets it back to the usual nearly okay state.

LilyPony
02-20-2010, 01:59 AM
Before diagnosis, I'd been to many many eye doctors desperate for a biopsy of the mass protruding from under my eyelid. My eyes upon examination were totally normal and they all said that the condition wasn't in the scope of their knowledge. Had one tell me "it's not my problem". I am always slightly blurry. My good eye is so good that I can read the entire eye chart, as a kid both eyes could do that. Now everyday, i can read the 20/20 line but it is blurry from the bad eye. When I flare up it gets much worse. A few days ago, when I close my eyes, the bad eye has a green spot that I'm seeing. If you close your eyes and press on top, you get a spot on the bottom. It is excalty the same as that spot. I don't know how else to explain it. The workign hypothesis has been that the inflamed tear gland was putting pressure on the optic nerve. I'm interested in knowing about your intercranial pressure and if it might be an explanation for my symptoms.

elephant
02-20-2010, 02:40 AM
Prednisone can give you the intracranial pressure, glaucoma and cataract's. I have glaucoma secondary from the prednisone.
That is how my eye's felt too sand in them...the re stasis drops worked for me.
I would see a really good eye doctor who specializes in WG... if your able to..
Between having WG and side effects of the medicines...I forget all the symptoms/problems that I have because there are so many!

Sangye
02-20-2010, 06:56 AM
LilyPony,
You really need to find a rheumatologist who specializes in Wegs to oversee your care. No eye specialists can manage the disease, even the ones who specialize in Wegs. They're only there to co-treat, but really need the expertise of a qualified rheumy to guide the treatment. Taking only bactrim and pred might be okay with mild involvement, but I'd only let a Wegs rheumy make that call.

You also should have diagnostic tests (MRI and/or CT head) to rule out Wegs behind the eyes or other Wegs involvement. That is somewhat common with Wegs, especially when you have one eye affected more than the other.

The elevated intracranial pressure began as an odd tightness in one neck muscle. Within a few days I noticed my vision was strange. If I looked at a tile floor with grout lines, some of the lines looked wavy. An opthalmologist confirmed swollen optic nerves and thought it might resolve on its own. (We did a brain MRI to rule out brain tumor-- the only other thing that would cause bilateral swollen optic nerves) A couple days later I developed projectile vomiting, excruciating headache and within a few hours began losing my vision completely in both eyes.

Usually the condition resolves in a few months as you take diuretics to maintain proper intracranial pressure. For whatever bizarre reason, mine has never resolved (2.5 yrs later). If we decrease the diuretics the pressure rises within a day. I might have to stay on the diuretic for life. It's not a very strong drug, so it wouldn't be the end of the world.

elephant
02-20-2010, 09:30 AM
Sangye do you take lasix? Do you need to monitor your potassium?

Sangye
02-20-2010, 09:42 AM
The diuretic for the intracranial pressure is Diamox-- a potassium-sparing diuretic that isn't used for many conditions. It's not nearly as strong as lasix. I do take 20mg Lasix once or twice a week to help with general fluid retention, and I make sure I eat more potassium on those days.

I just looked up Diamox on Wikipedia to remind myself of its mechanism of action. I learned something new--that it predisposes you to kidney stones. I had one kidney stone in 2008 and have had countless stones since. Ever since the first one (which was indescribable pain if you've never had one) I can tell when one is starting. I take a liquid phosphorus supplement and it dissolves the stone very quickly, before the pain escalates. I am never without that supplement. I don't even go to the doctor or tell them it's happening. Thanks for asking, Elephant! I've always wondered why on earth I started getting kidney stones!

katwoman
02-21-2010, 08:59 AM
Beinformed, I strongly suggest you see an ophthalmologist, preferably one who is aware of WG, I had the same thing happening and it turned into cellulitus in the tearduct, believe me if you think its painful now if it turns into cellulitus (which is swollen so much i can hardly open the eye which becomes even redder and more teary) you will really know about it, a number of times i ended up in hospital on intravenous antibiotics and having to go into surgery to have it cleaned and packed (if left the skin would actually burst open as the tear duct is full of puss).
The ophthalmologist I would see would put me on specific antiobitcs and got me to hot pack it (even just using a facewasher with water as hot as u can stand) as often as I could while I was experiencing the same symptoms as you (it did help), but sadly once it progressed to cellulitus it always turned to cellulitus. The solution for me was having a DCR done to both eyes (one was done internal through the nose and the other external), I still have watery eyes but no inflammation or cellulitus thankfully.

beeinformed
02-22-2010, 05:03 PM
Hi Katwoman!

Thank you so much for replying to my story about how I lost seventy to eight percent of my tear glands within a period of twenty-four hours due to an acute inflammation of the lacrimal/tear glands.

Besides the symptoms of pain, swollen upper eyelids tearing, photosensitvity, did you also develop extreme dry eyes as a result of this acute inflammation, like me within a very short period of time?

I have been under the care of a ocular immunologist (eye doctor who specializes in inflammatory eye disorders) since Nov. 2008 and currently the doctor has prescribed durezol steroid eyedrops, which are the same as the Pred Forte drops except that they are much more concentrated, are preservative-free and does not have to be shaken.

If the Durezol eyedrops are successful, my doctor wants to put me on Cellcept medication.

Thank so much for sharing your story with me and I look forward to your response to the above question I asked you! :)

katwoman
02-23-2010, 01:39 PM
Hi Beinformed,

I hope my comments are helpful to you, I know how terrible it is to suffer problems with your eyes, especially when they are swollen an painful, I hope your doctor can ease the problem.

I found my eye problem could just turn overnight, my eyes would feel gritty and my eye would water more (presume this is probably dry eye causing more tears to be created) and become red and also find that when I wake up in the mornings it was like conjunctivitis but not, as the eyelids would be stuck together with a yellowish mucous, my ophthalmologist had me on an antibiotic eye drops as well tablet form but know he just has been on regular ones from the chemist for dry eye.

As mentioned even after the DCR one eye continues to water and also I still find some morning the eyelid is crusted together and I am very careful with that eye as it has a tendency for some reason or another to become inflamed (but as previously mentioned does not become cellulitus).

Please keep me updated on the progress you have with your doctor.

elephant
02-23-2010, 10:34 PM
It is all Wegeners, I had those symptoms really bad 5 years ago it started and I am telling you that restasis worked. It lowers your immune system it is a cyclosporine drops and helps with dry eyes. So the funny thing is that I was not diagnosed with WG until 2008, and I think those drops calmed my WG in my eye. I had eye pain too with it. I saw so many eye doctors because they could not figure it out and never did. So one eye doctor said, " use restasis and if does not get better let me know." I used it and it improved within a month.

beeinformed
02-24-2010, 05:13 PM
It is all Wegeners, I had those symptoms really bad 5 years ago it started and I am telling you that restasis worked. It lowers your immune system it is a cyclosporine drops and helps with dry eyes. So the funny thing is that I was not diagnosed with WG until 2008, and I think those drops calmed my WG in my eye. I had eye pain too with it. I saw so many eye doctors because they could not figure it out and never did. So one eye doctor said, " use restasis and if does not get better let me know." I used it and it improved within a month.

Hi!
So do you think that all of the symptoms that I have described above can be attributed to wegener's?

I used the restasis eye drops for about four months and unfortunately it did not help me. Recently, my doctor decided to try Durezol steroid eyedrops and see if that will help me. I am awaiting approval from my HMO plan to pay for this medication and hopefully I will be able to try it soon.

I think it is wonderful that the restasis eyedrops are giving you significant relief from your eye symptoms and wished it would have helped me a little! :(

katwoman
02-24-2010, 05:44 PM
[QUOTE=beeinformed;11486]Hi!
So do you think that all of the symptoms that I have described above can be attributed to wegener's?

Yes it definitely is linked to WG - the watery eye and constant nose bleeds were my first symptoms that I had for over a year before the other symptoms developed and they are all linked to WG!

Jack
02-24-2010, 06:22 PM
This is starting to sound like the usual case of symptoms being treated instead of the root disease. I too was treated with steroid eye drops in the days before I was diagnosed, while all the time the Wegener's was silently eating me!

beeinformed - do you have a positive diagnosis of having Wegener's? What medication are you taking?

elephant
02-24-2010, 10:18 PM
Sorry beeinformed that the restasis didn't work. Yes your wegeners is active. Hope your insurance approves it soon. I take Cellcept and like it. You need to be on something to calm this down.