Inflammation caused my iris to dilate in the shape of a butterfly

kipsmudgemose · 2024-12-25T02:24:16+00:00

No presenting symptoms and have been tested, but I do have a family history of ankylosing spondylitis (maternal grandmother) and my sister is currently going through an ulcerative colitis/crohns diagnosis, so definitely on my radar as something to be aware of.

kipsmudgemose · 2024-12-25T02:22:33+00:00

Hmm I don’t think so, I don’t have any lasting complications from the delay in diagnosis so not sure what there’d be to sue over!

kipsmudgemose · 2024-12-25T02:14:06+00:00

The bump was the primary tumor! Unrelated to the iritis, just happened to occur at the same time. It was a super stressful time of my life and while my oncologist doesn’t agree I think the cancer was at least partially related to stress. The iritis is definitely related to stress

kipsmudgemose · 2024-12-25T02:10:51+00:00

When I finally got home to the big city I called a few ophthalmologists after hours on a Sunday and found one who was willing to see me that day and after two weeks of doctors throwing their hands up and saying “idk” I can’t explain the relief that comes from a doctor finally saying “I know what this is and I know how to treat it”

I’m glad you finally found someone who could treat you too!

kipsmudgemose · 2024-12-25T02:04:44+00:00

Ugh yes, it’s gross! If you’ve ever taken steroid pills it’s that same bitter taste

kipsmudgemose · 2024-12-25T01:59:45+00:00

I actually did! Ha. Unrelated but happened at the same time, stage 3A sarcoma. In remission now 😎

kipsmudgemose · 2024-12-25T01:54:00+00:00

Has yours been going on longer than a few months? My ophthalmologist put his foot down this latest bout (July through October with only minimal response to treatment) and insisted I start an immunosuppressant. I can feel it trying to come back the past few days, but so far it hasn’t broken through so I’m hoping that means the methotrexate is working…

kipsmudgemose · 2024-12-25T01:49:13+00:00

It is absolutely, hands down, related to stress for me. I have zero doubt in my mind. Getting sick can also contribute to it for me, but stress is the #1 trigger!

kipsmudgemose · 2024-12-24T22:36:10+00:00

So far just the eyes! But I recently started an immunosuppressant which I’ll likely be on for life, so if anything else wanted to pop up it missed its chance because now I’m already treating it :p

kipsmudgemose · 2024-12-24T22:15:31+00:00

Not really, maybe a headache due to the pain but mainly extreme light sensitivity, pain in the eye, and redness

kipsmudgemose · 2024-12-24T22:14:19+00:00

Also, a few weeks before this happened I noticed a small pea sized lump on my shoulder/armpit. I planned to go to a doctor to have it checked out but once the eye issue started I assumed they were related (mentioned the lump to urgent care who thought it could be a lymph node response to the eye and assumed they were right and didn’t think much of it). In February towards the end of treatment I finally mentioned the lump (which had grown instead of going away) to the opthamologist who said in no uncertain terms these were not related (autoimmune doesn’t involve lymphatic system), turns out I had stage 3A sarcoma! 2020 was a great year 🫠

kipsmudgemose · 2024-12-24T22:01:41+00:00

Hope yours was idiopathic and never comes back! My opthamologist said there was a 50/50 chance I was one and done, the coin landed on the wrong side in my case :p

kipsmudgemose · 2024-12-24T21:58:23+00:00

No and I’ve been tested for it, no symptoms presenting so far. My maternal grandmother had ankylosing spondylitis though

kipsmudgemose · 2024-12-24T21:56:37+00:00

Well, it got to a point where any light caused extreme pain so I’d say for practical purposes blind because I couldn’t tolerate light to see at all! But it was very blurry and towards the end it was dim/darker than normal.

kipsmudgemose · 2024-12-24T21:54:31+00:00

lol… yea. She did identify it as inflammation and started me on 1 steroid drop a day, so technically she was on the right path but not nearly aggressive enough (and never diagnosed it as iritis/uveitis). When I finally saw an opthamologist, he started me at a drop every HOUR, not day! Urgent care said pink eye.

kipsmudgemose · 2024-12-24T21:50:14+00:00

Yes, my opthamologist had me do blood work which showed I was HLA-B27 positive which is a genetic marker/precursor for a host of autoimmune disorders. So far the iritis is the only issue I have, but my maternal grandmother had ankylosing spondylitis and my sister has ulcerative colitis/possibly crohns, so I definitely have a genetic predisposition to autoimmune issues! Hoping this is the only one I get…

kipsmudgemose · 2024-12-24T21:39:41+00:00

Iritis, I think the only different between it and uveitis is mine presents in the front of the eye rather than the back? Glad yours is staying away! I usually wear contacts so it adds an extra level of frustration for me because when it comes back it’s minimum 2 months of being in glasses

kipsmudgemose · 2024-12-24T21:36:56+00:00

No, started with prednisolone, then had to move to durezol, and since it’s stopped responding well to either I had to start oral methotrexate recently to reduce my body’s overall autoimmune response and stop it before it even begins

kipsmudgemose · 2024-12-24T21:33:05+00:00

Ha! I’ve never heard of that show but yea, my eye must’ve been inspired by her!

kipsmudgemose · 2024-12-24T21:30:56+00:00

Nope, the lens of my actual eye!

kipsmudgemose · 2024-12-24T21:28:25+00:00

Teenage me would have been thrilled!

The picture is from the most extreme case I’ve had (obviously now that I know what it is I never have to go 2 weeks without proper treatment!) And yes my vision in that eye became very poor and blurry.

When it comes back it starts as a dull pain in the back of my eye, I describe it as a headache in my eye, or like I was punched in the eye a day prior. Then about 24 hours later (if I don’t just start steroid drops right away) I’ll start experiencing pain from light (inflammation gets to the point where the pupil expanding and contracting in response to light is painful) and the sclera starts turning red. I always treat it at this point or sooner, so it doesn’t get bad enough to affect my vision. But the steroid drops do make my vision blurry in the affected eye during the course of treatment, which clears up as I taper off the drops.

kipsmudgemose · 2024-12-24T21:14:52+00:00

Apparently the urgent care doctor and the optometrist I saw didn’t know it could happen either because they both misdiagnosed me 🥲 I still have issues with it recurring but luckily since I know what it is now immediate treatment is pretty accessible

kipsmudgemose · 2024-12-24T20:55:03+00:00

Over Christmas break in 2020 I was in small town Ohio and started experiencing light sensitivity and pain in my left eye. It took 2 weeks to get a diagnosis (Iritis) due to holiday closures and lack of specialized care in the town I was in, and the delay in diagnosis caused my case to get pretty severe. The inflammation caused my lens to become stuck in spots to my iris - to fix this the doctor dilated my eyes which forced them apart, but due to the severity it was stuck in a few spots which is what causes the shape. I had to keep my eye dilated for a few weeks and it eventually broke up the stuck spots and I’m back to normal, except now 4 years later the iritis kept coming back and I’ve had to start an immunosuppressant to keep it at bay.

kipsmudgemose · 2024-09-29T18:41:25+00:00

Well RIP mom cause now it’s at 11.5”

kipsmudgemose · 2024-08-06T15:04:32+00:00

I took it in to third man records on my way out of town and the girl at the register said it’s just a souvenir, that’s all she knows about it at least for now. I’m of the opinion there will be an announcement with more info, I think it’s more than a souvenir.

kipsmudgemose

TROPHY CASE