Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group okay...hear me out

my apologies in advance for being a big worry wart and inundating the board with infinite questions/complaints/musings, but please hear me out on this...

i REALLY want to understand what to worry about with potential iritis/uveitis...many of the replies have been very helpful...but i still don't understand at what point i should go from, "oh, my eyes are irritated and look a bit bloodshot."...to, "i need to rush to the ER because it's 10:00PM and the ideal ophthalmologist exam is not available, so something is better than nothing." i feel i'm smack dab in the middle of those two right now...

when you say it hurts to look at light...do you mean any kind of light, such as general outdoor light AND indoor lighting (average intensity, say, in a bedroom)? i also know blurred vision is a symptom...well, being near-sighted, i'm finding it difficult to know clearly if any noticeable changes have happened with my vision since this all started last week.

yeah, i know, i know...i'm probably overanalyzing the heck out of this. and i really do appreciate everyone's patience with my silly questions...but this is obviously very serious stuff...and i don't want play games. the ophthalmologist i saw said something about iritis usually affecting the whole eyeball around the iris, not just a portion of it.

i already know the clear answer is "if you have doubts, see the ophthalmologist again." would love to, but as luck would have it, the only opthy in my network is on vacation all week. the one i saw last week will come out of my own pocket...god knows what it will cost me...a second visit?!? yikes...(yes, i already hear ya ben ) and i know, no amount of money should be in question when it comes to your vision...i completely understand that...but i certainly don't want to spend it unnecessarily either (i am REALLY in a financial bind right now)...as you can see i'm driving myself nuts here...AGAIN. you can only imagine what i'm putting my wife through...

thanks, once again, for the indulgence...bring on the pity party.

-j

Ok Whiteboy,

When I have iritis and this is just me, it feels like I have sand in my eye, the whites of my eye/eyes are really red. They hurt to even keep them open. I can not take any light when I am in the middle of a flare. I have to have the whole bedroom dark. They burn, hurt, itch just about anything you can think of.

I can tell you, I wouldn't recommend going to the ER, they will just look at you funny say there isn't anything we can do and you will need to make an appt. with your eye Dr.

When I have iritis, I usually take oral steroids along with eye drops called Pred Forte, steroids in the eyes. I have had it so much my Opthamologist keeps me in drops to use at my discretion which I am very careful because usung the drops too much can cause major eye problems even blindness later in life.

When my eyes are as good as they can be my Dr. told me to buy these over the counter drops called Gentle Tears and put a drop in each eye 4 times a day to help them stay wet and lubricated.

I have probly had iritis about 10 to 12 times and it seems to be happening more and more frequent.

If you have any doubts, I would get back in again, you only have 1 set of eyes.

Lisa

J,

I think your questions are excellent! I have never had iritis, but in the past worried about my 16 year old son. He doesn't have a.s. that we know of, but he has tight and at times painful achillies tendons and has always been light sensitive. Guidance from the good people here at kickas is worth its weight in gold. Ask away.

Hope you're feeling better soon.

Kirst

hi mwb,
i wish i had some good advice other than what the others have said. if you are experiencing pain and redness. or any of the other uveitis symptoms then by all means go get it checked out. eyes are nothing to play with.

i wish i had more to offer, but i have had spondy monster for many years but blesed with no iritis or uveitis. doc thought i had sjogrens...dry eyes, mouth, ulcers in mouth. was negative. but he finally concluded that it was related to the autoimmune system issues. i get very dry eyes and mouth sometimes. and mouth ulcers were the very very first sign i had when i was first starting to flare with the spondy monster. THOSE are no fun at all. i had to take steroid cream and it rarely helped because more would pop out. havent had a bad bout in a couple months.

hope you get an answer soon!

Hi J

I understand your dilemma. If you haven't had iritis before, it can be tricky for you to identify the symptoms, escpecially if your on some anti-inflammatory medication (don't know if you are). My first iritis came when I was 17 and it was a full-blown classical iritis. Only one eye affected, very painful when any change in light level occured (didn't have to be big changes at all) and so on. This was before my AS started. My second iritis was somewhat milder (same eye) and occured after my AS showed itself but before I began any treatment for my AS.

The following flares have been even milder and I suspect the symptoms are dampened somewhat by the medications I take for my AS. I also recognize the few symptoms I get very early. The indications I use are: unlateral symptoms (only one eye), light sensitivity (doesn't have to be pain, but just light-related "funny feeling" that only affects one eye), redness and general irritation in the affected eye.

However theese symptoms aren't written in stone. Iritis can present itself different in different persons.

Hope your worries are being set to rest soon.

/Mattias

OK, one question, since the opthie seems to have ruled out iritis (which affects the muscles surrounding the iris), what did he say he thought it was?

Hugs,

My off-the-cuff answer to this is--you will know when you have iritis, trust me.

Now, while that is too flippant, it does contain the core nugget of truth that I have always found with iritis. The posts you've already received are excellent, and they give the primary symptoms to watch for, but I think that, bottom line, iritis is severe enough that, if and when you do get it, you will know it pretty darn quickly. Your eye will feel different than it has every felt, look different than it has ever looked (for me, the red isn't just bloodshot, it's a red corona around the iris, or so people tell me, since I can't see it myself), and see things differently than it has ever seen things. For that last one, I would describe iritis vision as cloudy, not blurry, and to me that is a big distinction. Blurry to me means things are a little fuzzy around the edges, but the quality of the light is clear--you don't feel as if you are looking "through" something that is partially blocking your vision. With iritis, I feel as if I am looking through a thin veil, or a cloud of smoke, as everything becomes indistinct and I lose most of my ability to judge distances and depth of field. My main test is based on that last quality--if I think I have iritis, I shut the "good" eye and look through the affected eye. If the world suddenly looks very indistinct and it feels like I am looking through a cloud, then I know that I have it. It's not a blurriness that goes away when you rub your eyes, or even a blurriness that you get when you dilate your eye--it's a complete change in vision. That's the best way I can define it.

Pain is NOT a good barometer for me. A couple of my attacks have hurt in the past, but now, I only get pain if I am REALLY oblivious and ignore all the signs, letting the iritis get very, very severe before I realize I have it. So don't rely on pain alone.

And, of course, everything I just said comes with the usual AS disclaimer--these are the rules and tests that work for ME, but that doesn't mean they will work for everyone else. I've told you, the best way I can, what I watch for and how I know, but I do realize it will be different for everyone (although at it's core, iritis of course has symptoms and signs that should be common to all sufferers).

That's all I have time for right now. (And, I know I owe you a PM too, which I will get to tonight, promise.)

Brad

Hi J,

I'm glad your eyes have not been feeling as bad as they were. That's a good sign!

Redness appearing at the inside corner of both eyes is not typical for iritis in my (patient-only experience) and limited knowledge. Your Ophthalmologist suspected allergies might be the cause, and that just strikes me as sounding right, but no-one can know this one way or the other, or with any confidence, except for your eye doc.

You have a few good things favouring the idea you're not suffering from iritis. Iritis will affect roughly only a third of all ASer's, and AS isn't common to begin with. Being in a small subset of B27 negatives would make the odds of AS plus iritis even more remote, and then finally to present atypically with both eyes involved would be rarer still. The best clues (from an untrained person and over a very long net) are that your eye doc didn't see any inflamed cells and the pain hasn't escalated to the stabbing kind since last Friday, which is often (but not always) the case on a 1st attack.

Most of us here would probably agree that *rare* is an annoying word that has lost it's former impact, so yep, rare things can happen... but the odds are good that your doc is correct that you’re dealing with allergies. Not suffering from allergies myself, I only know the season is right but can’t help to compare symptoms in any useful way.

I certainly hope that your eyes will begin to feel better soon and this worry will pass.


***
For any other members that may be following this thread and feeling concerned about eye symptoms… please go get your eyes checked by an Ophthalmologist! Any new symptoms which develop in the eyes should be checked without delay!

Wishing for the best eye health to all!

Thanks Brad,

I have not yet, ever had ititis so flippant or not, you have given us a good outline of what we can compare our symptoms to.

I do have fairly severe dry eye symptoms periodically and carry artificial tears with me wherever I go and even this, can be a major irritant if not attended to.

Thanks,
George

This adds a couple important things I forgot mig and serves as a good reminder that we forget how rare iritis actually is (although, as you astutely point out, that word truly has become relative, hasn't it!)

The double-eye thing: rare is definitely the word that comes to mind with that, and you are right to point out that it would be, frankly, astonishing to come down with the double-eye whammy the first time you ever get iritis. I would estimate that I have had iritis roughly 25 times in my life now, maybe 30, and only twice have I had the daily double with both eyes at once. Of course one of those is right now, really driving home that "rare is relative" point! In fact, not only that, mine was even more distinct--the very first case I had when I was 18 was in the right eye. Didn't get another attack until I was 29 (11 pleasant years for the eyes, I must say!), then bam, it hit the left eye. After that, it was an annual event for a few years, then switched to the semi-annual event it has become. Until just a couple years ago, every single one of those outbreaks was in the LEFT eye, with the original right eye staying symptom free for years and years.

Since it did come back in the right eye, however, my eyes have been in iritis free fall. I'm at the point where every six months for an attack would be a blessing--every three months is the norm now. In fact, when we get this episode under control, the doc said he wants me to use the PredForte drops on a maintenance basis--one or two drops a day, every day, until who knows when. He thinks this might be the only way to get the situation under control--he said he's never seen anyone flare as easily as I do now.

The other good point you made that I forgot is that the doc didn't see any inflamed cells. With me, when I get it bad, he knows before he even looks in the magnifying scope what he's going to see, but when he does look, he said the inflammation is just rampant and impossible to miss. The point being here that, if you did have it MWB, even a hack optho would have had no trouble spotting it when he checked, esp. if it was in both eyes. Once the iritis has become bad enough for you to notice it, the inflammation is widespread and very easy for an optho to spot, so if he says there wasn't any, I really don't think you need to spend the additional money to have him check again. Now, if you had a history of iritis and were known to be hypersensitive to its comings and goings, I would give some weight to the idea that maybe you are feeling the inflammation before it is visible, but that isn't the case here and thus this seems very, very, very unlikely.