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Mar 26 2012

They don’t call it “eye” ritis for nothing

Actually the medical term is Iritis, as in inflammation of the iris, and mine’s caused by an autoimmune disorder called Anklyosing spondylitis. It’s like a super arthritis which attacks soft tissue on top of the usual aches and pains in the joints. AS is genetic, there is one main marker (HLA-B24) and one or two others have been found in the last few years. Some researchers think the genes for autoimmune disorders like AS may have been greatly favored at various points in human history, when any resistance to epidemic disease gave an individual a leg up. If not for modern medicine, my case would have at least blinded me by now and have me halfway to crippled. But from an evolutionary viewpoint, it’s better to survive long enough to sire offspring and go blind in your 30s, than to die as a child from TB or the Black Death.

Back in 1993 I came down with an obscure, painful condition called iritis. It’s fairly rare, and by the second or third time I had it in the space of a few years a suspicious eye doc checked for a bunch of unusual autoimmune disorders and that’s how the diagnosis was made. These days I take a high-tech biologic drug called Humira which controls it pretty dang well, a handful of painkillers and NSAIDS everyday, and various cortical steroids as needed. That’s a good thing, because the symptoms have noticeably worse over the last few years. Like an idiot I ran out of Humira over a month ago, I neglected to preschedule an appointment with a very busy rheumatologist, can’t get into see him for another couple of weeks, and my health insurance won’t let this incredibly expensive drug be refilled with out an exam and bloodwork every time. Which feels an awful lot like another case of an insurance company erecting the usual unnecessary hurdles of inconvenience.

Whether on the Humira or not, I feel twinges of iritis every few months. Sure enough, on Saturday morning my right eye started acting up — every time I get a case of iritis out of the blue, it’s on a weekend, always the fucking weekend, when docs are closed. Maybe because I’m not on the Humira, maybe just because of it was due. by Saturday evening it had turned into a full blown case of raging iritis. Imagine a very painful corneal abrasion that especially smarts whenever the iris contracts or dilates, i.e., whenever the lighting level changes, which you learn very quickly, under that kind of severe operant conditioning, is pretty much whenever either eye is in use. To make matters worse, this flare up triggered a sort of weird migraine in my forehead, painful to the point of nausea, so I spent the last 24 hours in a dark room listening to music. It’s a good thing I have a few prednisone tablets and various eye drops, I got on top of it, fast, and they’re already beginning to work. This morning the headache is subsiding, but my eye so dilated everything is a big fuzzy blob superimposed over the other eye and I can still feel the iritis screaming out whenever I look at this computer screen or the TV.

10 comments

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  1. 1
    dukeyork

    Jeez, that sucks. I hope you feel better!

  2. 2
    Dave Regis

    Sorry to hear that, Stephen, I wish you a speedy recovery from this bout. I had one brief run-in with iritis while ago, and once was enough.

    [I had a sore eye, no idea why, and was told 'ah yes, anterior uveitis, idiopathic', which I believe translates as 'sore eye, no idea why'... They were better on treatments, though.]

  3. 3
    Johnny Vector

    Your link is correct, but the anchor text is wrong: It’s HLA-B27 (not 24). I was fortunate enough that it first showed up as a swelling of one knee in grad school, and further fortunate enough that one of the front line docs at the school clinic was a rheumatologist, and even more furtherly fortunate that the docs at the clinic talked to each other regularly. So when I went to the orthopedist first, he immediately did an HLA screen, and when the results came in sent me right upstairs to the rheumatologist.

    One final bit of fortune is that I only have one copy of the gene; sounds like you have a double dose. Which totally sucks. But hooray for modern medicine; and congrats on at least getting it diagnosed. The good news is it does tend to improve as you get older. Since I hit 40, it’s been pretty negligible (YMMV).

    Good luck getting some meds quick.

  4. 4
    nathanlevesque

    Ugh, anklyosing spondylitis, that’s just brutal. A former coworker of mine has it, I hope he’s doing ok but it seems doubtful…

  5. 5
    Dalillama, Schmott Guy

    @Dave Regis
    I had a 2 year bout of the same diagnosis as a teen, and my eyesight never did fully recover.
    @Steven
    You also have my sympathies on your current bout. Iritis sucks. Regarding the prevalence of autoimmune disorders, another theory I’ve seen is that assorted parasites (tapeworm and similar) have been endemic to human populations pretty much throughout our evolutionary history. These parasites secrete immunosuppressant chemicals to keep the body from ejecting them, and so a hyperresponsive immune system is advantageous because it allows the immune system to work reasonably well even after those immunosuppressants are taken into account. Since in the first world those parasites are basically gone, we start to see all kinds of autoimmune disorders. I recall reading about research in which people suffering from rheumatoid arthritis and others with severe broad spectrum food allergies, and deliberately infected them with tapeworm. Both groups experienced a significant reduction in symptoms, and research is continuing, particularly into ways to extract the relevant chemicals and treat people without having to give them tapeworm.

  6. 6
    wilsim

    I can’t imagine having severe pain in my eye. I am sorry that you suffer from that.

    Glad my auto-immune disorders are mostly painless most of the time.

    I have psoriasis, but my mother has it over 95% of her whole body. Crohn’s disease runs in my family, with my maternal grandmother, my sister, and a cousin all suffering from it.

    I am mostly spared, i have some psoriasis in my ear canal, forehead in my hair line, eyebrows, across my nose and my cheeks. I have psoriatic arthritis too.

    What I want to know is: Do these auto-immune disorders cluster? Or another way to put it, do my children and I have increased chances of developing certain disorders? Does crohn’s cluster in my dna with psoriasis and arthritis?

  7. 7
    slignot

    You have my greatest sympathies. Auto-immune chronic issues are more frustrating than broken bones or infections.

    My husband is a fellow sufferer, also inherited, and from what I was told, I believe Johnny Vector is correct about the specific allele. There’s a whole wonderful host of auto-immune fun in the package: iritis, arthritis (no formal diagnosis of Anklyosing spondylitis, fingers crossed) and permanent colitis. He’s luck to have been spared his father’s Crohn’s disease, at least, we hope so.

    He first developed the iritis when he was around 22, and unfortunately we did not notice the problem before it caused some damage. Something like 85% of his iris is stuck down, causing problems with fuzziness and trouble with flat/low light situations. He gets to use these wonderful steroid eye drops to prevent flare-ups from causing further damage and tells me they taste terrible.

    The colitis is so expensive to treat under our current prescription plan (after months of fighting and wrangling with insurance, they offered a bargain of $380/mo for just one presciption) that he’s actually been untreated for over a year. Thankfully colonoscopies are better covered than the prescription drug plan, so we’re at least watching for additional polyps so that we can at least catch anything caused by the inflammation before it becomes more serious.

  8. 8
    slignot

    What I want to know is: Do these auto-immune disorders cluster? Or another way to put it, do my children and I have increased chances of developing certain disorders? Does crohn’s cluster in my dna with psoriasis and arthritis?

    Sorry to say, probably yes. However, you have no way of knowing that even if they inherit a predisposition whether it will happen at all or what they expression will be. It could end up being very mild.

  9. 9
    RW Ahrens

    wilsim,

    Autoimmune disorders run in my family too. Both my great aunt and my mother died from myasthenia gravis, my oldest daughter has Crohn’s and I’ve got that bad old psoriasis. My sister, on top of that, has MS.

    Whether one can have more than one of these cluster at once is a good question, but I’ve not seen one of my family suffer from two of them, thankfully. One is bad enough.

    Sorry to hear of your problem, Stephen. Eye issues are bad enough without pain on top of it!

  10. 10
    geocatherder

    So sorry to hear of this painful condition. Of course it sets in on a weekend, as do women’s bladder infections (or at least, mine always have).

    I hope the docs can get you back to functioning “normally” soon.

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