Living with Iritis (Uveitis) – Things you should know

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Before I start – this isn’t a sympathy post – whilst I appreciate the good wishes, the last thing I want is anyone to feel sorry for me! Yes, Iritis is a pain (literally and mentally), but no, it doesn’t (really) change my life, and there are people a lot worse off than me – so this is purely an information post about the condition, its causes and symptoms and mainly, how I deal with it.

Firstly, what is Iritis?

Iritis is inflammation of your iris, the coloured part of your eye. It’s also called anterior Uveitis. It has very similar symptoms to most eye issues on the surface (redness, soreness, feels like you just have something stuck in your eye). But, it’s far from that.


I first suffered with Iritis in my early 20’s – I was about to go on holiday with my (then) girlfriend, and it was all a bit stressful. I was sat at work, and I noticed my eye was red. I assumed I’d scratched my eye with some dust or grit, or, worst case, I had conjunctivitis or something (something I’ve never had before, but there’s always a first!). I thought I’d just grab some ointment, so went to the pharmacy.

Thankfully (and I truly mean thankfully) – the pharmacist refused to give me anything, and instead phoned the emergency eye clinic on my behalf. He mentioned that it could be serious, and that I should go immediately to the hospital, which of course, I did.

I’m a bit squeamish at the best of times, but when it comes to eyes, it’s not for me at all. Eye drops are something I could never deal with, so the fear was real right now!

At the hospital, I was greeted by a barrage of questions, and some key tests (vision, pressure and so on). Finally, a doctor saw me, dilated my pupils and concluded that I had Iritis.

I’d never heard of it – so when I got home, I looked it up, of course! Then it dawned on me just how serious it was, and how lucky I was that the pharmacist didn’t just dismiss it as an eye infection and send me home. Iritis can lead to permanent blindness, with every flare up. Long story short, the inflammation at the back of the eye can cause your pupil (the black “hole” in the middle) to get stuck. For most people, the pupil dilates (gets bigger) in darkness, and shrinks again when it’s light. For me, when Iritis is around, it gets stuck. In bad cases that I’ve had, it can cause the pupil to get partially get stuck, causing it to look moon shaped, instead of round. Once it’s stuck, it’s at its worst, and this is when it can become permanently stuck and lead to blindness.

This first case for me was many many years ago – and since, I’ve had uncountable flare ups of Iritis. There is no known main cause for it – but it’s thought that stress is a key player. It’s also known that people with a certain gene deficiency are higher risk – so I had blood tests for this, and I was diagnosed as HLAB-27 Positive, which means I’m more likely to suffer from Iritis (along with other muscular and inflammatory issues, like, back pain, which I suffer with a lot). HLAB27 can, in some people cause severe Arthritis and be at risk of other auto immune diseases. Thankfully, other than the back pain, I’m all good on that front. But it’s something I need to be aware of, and it also means I can’t give blood.

At it’s height, I had Iritis in both eyes at the same time. The treatment is simple, it’s a course of very strong steroid eye drops for several weeks (starting at anything from 8 to 12 times a day, and tapering off over the weeks). These can be accompanied by a dilating eye drop to force the pupil to dilate fully, which means during these days (normally the first couple), everything in my world is damn bright, and blurry. I can’t drive during flare ups to begin with, and staring at computer screens can cause some headaches! During this mammoth flare up, one Doctor offered me a steroid injection in to the pupil. I refused, and opted for more drops, which thankfully did the job! The drops vary based on what the Doctor things will do the best job – for me, its a corticosteroid called Maxidex, with Cyclopentane to dilate my pupil for a couple of days (this one is the stinger, but, it’s good, you know when you’ve applied it properly for sure!)


I’ve lost count of the number of times I’ve had Iritis now. I know the cause, I’ve had scans and blood tests to check there’s nothing else, and it would simply seem that a combination of the funky HLAB27 gene, and stress, are the main triggers.

The past 14 days or so, I’ve been very aware that my stress levels have been rising. There’s been a few triggers. Obviously, being stuck indoors, and the constant niggle of the current Covid situation is one. Coupled with a falling out of love with social media (again) after some unsavoury comments (not personal, and not malicious, but certainly not welcomed) made me really start to worry about things, which hasn’t helped. I’ve taken a step back from that for now, though, so I’m distancing myself from the negatives there.

The other thing, is that I’ve not been able to go to the Gym for 8 weeks now. I’d gotten in to such a good routine, and it was helping with the constant muscle pains in my back, but of course, I can’t go at the moment. I do stretches and weighs at home, and try to get out on my bike as much as I can, but it’s simply not the same.

Thankfully, I know the very early signs of Iritis now, and have a direct dial number for the on call doctors at the amazing Norfolk and Norwich hospital (who I know quite well now!). When a flare up starts, I call them, and I’m in within the hour to be checked, and out again with the drugs required. Because I’ve been so much, they leave me to it, normally, you’d have to go back after 2 weeks for a check, and again after 2 more and so on.

So, here’s the early warning signs, please, don’t risk waiting, if you’re having eye pains, play it safe.

  1. Redness – around the pupil. Red circles , not just an overall redness.
  2. Soreness – like, the best way I can describe it is like someone is pulling your eye from behind. It feels tight, and like it needs to snap. It’s hard to explain.
  3. Irritation – You’ll want to rub your eye, it will feel like you have an eye last or dust in it.
  4. Light hurts! Photophobia is a key sign for me – if I wake up in the morning and open the curtains, and it hurts, then I know I’m in trouble.
  5. You’ll just know – honestly, once you’ve had it a few times, you’ll just know. I can say to Ashleigh now a couple of days before all the signs appear that I think it’s on it’s way.

There’s nothing I can do about it – and to be fair, now I know what it is, and how to treat it, I don’t overly care any more (not to sound blasé about it – it’s an awful condition and I have the upmost sympathy for fellow sufferers, but it could be worse, right?). I tend not to even let it bother me now. If I need to go to the hospital, I know what happens now, I must have been nearly 50 times at least. I know what all the equipment is, I know what nurses do what, I know what order to expect the eye drops in – I know what the treatment is. I even know what pharmacies nearby will stock the stronger drops that I need. Basically, I’ve learned to just accept and live with it, and I know now that when it crops up, I can take a couple of hours from my day, visit the doctors and get what I need, and I’ll be fine again in a couple of weeks.

So if you’ve stumbled here googling Iritis, my simple message is please, don’t be scared. Yes, you’ll have to stick eye drops in a lot, but after a couple of days, you’ll be a pro. I don’t even need a mirror now, just bosh, done. You’ll get there. And most importantly. DO NOT dismiss the warning signs – please, because no one wants to go blind.


Be nice, stay safe, try and remain positive – and if your eyes hurts, get them checked out!

As a footnote, and a slightly unrelated (but still related note, see above), please think about what you say to people online – without really knowing them, their family, or their situations. I mean, do this at anytime, and not just online, of course, but even more so at the moment. Your passing comment might not seem upsetting, but you simply don’t know what other people are going through, and what additional stresses it may put on to them. We’re all struggling now in our own ways – let’s not make it worse for each other.

26 thoughts on “Living with Iritis (Uveitis) – Things you should know”

    • Most people think it’s a made up condition, because of the name! hah! But you’re welcome – I hope you never have to hear about it again, though! 🙂

      Reply
    • You’re the first person I’ve ever spoken to with HLA B27! Hopefully it doesn’t affect you much though. Hope you’re ok on the Iritis front – stressful times at the moment and clearly a trigger (for me at least)

      Reply
  1. I am a 56 year old female and have had iritis since I was 18 years old. I also am HLA-B27 and so are many family members. Have been on about three different types of medicines including giving myself shots. Even though I take 2000 mg daily of Cellcept I am still having a flair now. Could be due to the hustle and bustle of work, Thanksgiving and Christmas. Being kind to myself today and taking it easy and calling eye doctor Monday morning.

    Reply
    • Ah that sucks – fingers crossed you can get an appointment with the eye doctor and get it resolved. If you don’t mind me asking, have you noticed any other side effects from the HLA-B27? All I’ve noticed is achey joints, but I can’t say for sure that’s caused by it!

      Hope you managed to enjoy Christmas!

      Reply
  2. Hi Mark, thanks for posting your experiences I also suffer from Iritis (anterior uveitis) and currently treating another occurrence, I’m 44. My first attack was around 2 years ago but I had milder symptoms before not realising what it was. Unfortunately this time it didn’t get better on its own and had been left so long that my iris and lens had become stuck causing unbearable pain, you know what I mean! Because it was so acute, I needed steroid drops (Pred Forte) every 30 mins (first day) and then reducing every week for around 6 weeks, pupil dilation drops and a gel to apply to my right eye to get me through the night. I was also told I may need an injection to the pupil, fortunately didn’t need that. Horrendous experience. I have had several occurrences since and now learning to live with it. For me, like for many others it seems to surface during stressful periods at work so I have to try and take it easy which I find hard to do as very active. Anyhoo all the best to you and to the other fellow sufferers. I also tested positive for the HLA-B27 antigen so at least I know the likely underlying cause.

    Reply
    • Ahh thanks for the feedback, Russ. Sorry to hear that you’re currently having another occurrence. I know exactly what you mean with the Iris and lens becoming stuck, I had crescent shaped pupils at one point and also had to up the Steroids to every 30 minutes. Thankfully, they cleared it up pretty quickly after that. They also threatened (;-)) me with the Injection, but I literally will not have them sticking pins in my eyes until there is absolutely no other option!!

      It really is a condition you learn to live with – I’ve lost count of how many flareups I have now – thankfully the Eye clinic here have given me a direct number to the on call nurses, and they see me within the hour to get the drops. I don’t even need to come back for checks now, it’s in > out > self medicate for 6 weeks and go back if it returns.

      I wish I knew more about what HLA-B27 causes, I know it’s linked to both Iritis and Rheumatoid issues – and I have suffered with significant back pains for several years now – but after scans and tests there’s no signs of anything significant, which is good.

      I find that exercise helps both, and that keeping a positive mindset can really improve the Iritis – Stress is a huge trigger for me (even if I don’t feel “stressed”, if that makes sense!)

      Anyway, thank you for sharing, and take care!

      Reply
  3. Thanks for posting this – it’s a bit of a comfort.

    My child suffered from Iritis just Sept gone (early 20s).

    It was really bad – and within the week ended up needing the injection (consisting of steroid and adrenaline) which seemed to give it a kick in the right direction. Then was on steroid drops for two months after this although the effects seemed to go about 2-3 weeks after the consultant wanted her to slowly taper.

    Anyway has now got bloodshot eyes in the other eye. No pain, light sensitivity like before and pupil seems to be working properly.

    (This question isn’t intended to get a definite answer more like some advice for me really)

    Has anyone suffered a flare up with no other symptoms other than just the bloodshot eyeball? (The eyeball doesn’t seem to be as pink as the last time just very bloodshot)

    P.S – she also tested positive for HLA-B27

    Reply
    • Heya! I’m so glad you’ve found some comfort in this post. I’ll tell you something – I no longer wait for my eye to go red. Ever since I was told that if it’s not treated ASAP, then it could lead to permanent damage, I phone the eye clinic and get it checked ASAP.

      I don’t want to alarm you here, but, with a condition such as Iritis, the longer you leave it, even with very few symptoms, the worse it can get. Please, call your Eye Clinic and get it checked as soon as possible. Being HLA-B27 positive and prone to inflammation, then it’s possible that a flare up could happen without all the symptoms.

      I’ve had countless cases now, and I phone the eye clinic at the earliest sign. For me, it’s not redness, but a pulling / tight sensation behind my pupil. Like a migrane, but not. It’s difficult to explain, but, please, I cannot stress this enough, just phone and get it checked. I’ve also had it in both eyes, it’s never consistent, and varies.

      The Docs have been brilliant for me – I now have direct dial to the clinic, and can be seen within a couple of hours, and back home with the eye drops to get it sorted. It’s normally a few weeks on the drops, but I tend to taper off quicker than recommended now I know the situation.

      Please do let me know how it goes with your daughter – just know that you’re never wasting anyones time by getting it checked, and potentially saving the sight of your daughters eye!

      Reply
  4. Went to the eye dept. Called and seen quickly and she has the very start of a flare up.

    Drops every 2 hours for two days then tapered for the next three weeks or so. No dilation drops needed as she has no pain or other symptoms.

    So everyone reading this – go and get checked even if the symptoms aren’t the same as the last flare.

    Quick in and out like Mark says and you know the score after that.

    Fingers crossed this will nip it in the bud before any other symptoms have a chance to start.

    Again, thanks for posting this blog – it’s factual and real without the scare mongering of a lot of other forums/blogs out there.

    Life can go on as normal which is a comfort to me for my daughter’s sake!

    Reply
    • I’m so glad you got back to me with an update – and so relieved you took the advice and went to get it checked! It’s really not worth waiting and it’s never ever seen as a waste of time by the doctors.

      Hoping for a speedy recovery now the drops are being used!

      Reply
  5. Hi Mark, Thanks for sharing your Uveitis experience with us. I have third flareups from last week and have started to take multiple eye drops prescribed by the ophthalmologist. I was diagnosed with AS back in 2016, and anterior Uveitis back then played the most crucial role in helping to diagnose AS (Ankylosing Spondylitis). I was suffering from lower back pain since I was 15. Now I am 33, and I have started to make the diagnosis for AS since 2016. Between 2017~2020 (before Covid), I was taking biologic to treat AS, and I guess it was helping my eyes as well. Since February 2020, I stopped the biologic due to personal and financial reasons and continued to treat AS with other medications (DMRAD). I had a couple of attacks before within the last six months, but it was not an Anterior Uveitis until recently had one of the worse flareups, which led to anterior Uveitis.

    I have noticed from your blog that you are working from home and have to deal with multiple computer screens while working. When you get Uveitis, how do you deal with a hectic work schedule, and how do you manage your eyesight (specifically the affected eye) during those flareups and in the middle of the continuous usage of prescribed eye drops? Do you set yourself any working hour limit in those moments or use any protective eyewear?

    Thank you again for sharing your experiences with us.

    Reply
    • Hey Karim – Sorry to hear about your flareups – it’s really frustrating isn’t it. I’ve had tests and scans for AS, but apart from being HLAB27+ (the gene that shows in AS sufferers), I’m all good on that front. I do suffer from lower back pain though, and can link flares of that with Iritis showing up.

      When I have a flare up, especially if I’m on the dilating drops too, I tend to take a lot of time away from the screen – thankfully work are ok with it. I’ll do an hour tops, then take some time to let my eyes have a rest. I’ve not had the need to wear anything to minimise the light, but I’ve seen other people using their sunglasses to take the edge off things! It’s really difficult to find a light level that is comfortable though, and sometimes the pain from the Iritis just gets a bit too much, so I’ll go and sit in a dark room and have a cup of tea for 20 mins or so!

      Thanks for reaching out, and take care!

      Reply
      • Thanks, Mark, for the reply. I appreciate it. As the doctor suggested to take breaks every 20-30 minutes, I am just trying my best to manage as the life of a researcher is very challenging staying without a computer/mobile screen when you always have things to do. For the time being, I have adjusted the brightness/contrast ratio and use Dark Reader in most browsers; the background (#363b40) and text color (#3b4252) are customized in most of the apps that I interact with regularly, such as pdf reader, vscode, and the likes. Let’s see how the battle with uveitis would be this time.

        Reply
  6. Hi Mark,
    I often do a google search to try and identify why I have a recurring throbbing, bloodshot left eye and your symptoms seem to be the closest to mine. My doctor seems to have been very thorough, blood tests, eye tests, hospital visits and brain scan but I have not had a diagnosis. When I realised these symptoms seemed to occur quite frequently I started to keep a dairy which I have kept for the last 3 years and I can expect to suffer every three months. However I also have other symptoms, nausea, weight loss and lethargy. Did you get any of these symptoms? The cycle from onset lasts for about 7 to 10 days.
    Regards,
    Margaret

    Reply
    • Hi Margaret
      Thanks for reaching out – I’m sorry to hear about the issues you are having. The symptoms really do sound very similar to iritis, but I’d have expected the eye tests or hospital visits to pick up on it! The only thing that makes me think it might not be Iritis is the fact it goes after 7 to 10days without (I assume) and treatment? I’ve never had an onset of Iritis go on it’s own, I’ve always needed steroid eye drops to calm it down, and then it goes after a few days of continuous treatment.

      I certainly suffer from lethargy when I’m going through an episode – mainly because it’s uncomfortable and painful, and it makes me not want to do very much!

      Personally I’ve never managed to pinpoint a cycle to it – but – I know that certain things can be triggers for my Iritis. Stress, for example. I also suffer from bad back pain just before it starts which is also quite a common link.

      Next time you have the eye issues, I would certainly mention to your Doctor that you’d like the eye clinic to check for Iritis – I’d be amazed if they haven’t already checked this as it can have some serious implications if not treated.

      I really hope you can get to the bottom of this – it must be incredibly frustrating for you. As I say, I’d certainly mention Iritis and have them check for that next time as a matter of urgency.

      Please do let me know how you get on

      All the best
      Mark

      Reply
  7. Thank you so much for your detailed post. I have suffered with iritis since my 40’s and like you have had numerous bouts, too many to think of. I believe stress is a cause, and today have read that cold sores can also affect it.

    Last week, I had a cold sore, I usually get these when I am run down, and noticed my left eye was red, today I can feel pain in both eyes, which is actually a first for me, whilst I have experienced iritis in each eye, I have never had it in both eyes at the same time.

    A call to the hospital it is I think.

    Reply
    • Hey Carole,

      Sorry to hear you’re a sufferer too! Both eyes at the same time is quite unusual I think – I remember when I had it in both, it cleared up quite quickly thankfully, but the dilating drops in both eyes was a real pain (in many ways!)

      Have you had any tests to try and diagnose any specific causes? I am HLAB27+, which is a genetic thing that basically means my joints are more prone to inflammation, which can be heavily linked to Iritis. I find that when my back starts to ache, I know I’m probably in for a flare up again. I can mitigate this in some situations though, via exercise and trying to not to stress too much!

      Interesting about cold sores, I’ve not suffered like that, but I can certainly understand how they can be linked, as they’re triggering your immune system in to a response for something.

      I hope you get on ok at the hospital – It’s good that you know the signs and know to get it sorted ASAP – hopefully you’ve caught this flare up early!

      Please do let me know how you get on.

      Best,
      Mark

      Reply
  8. Hi thank you for sharing, I don’t know anyone who has this!

    I also suffer from iritis! I have had it for many years! First few years it only came once a year, then I didn’t get it for 5 years and then I would get it yearly again! I have had it for about 10 years! I am also HLAB27 +. This past year I have had 4 flare ups, so frustrating! My ophthalmologist is sending me to a rheumatologist to go on medication! I am hoping this will help!
    Ineta

    Reply
    • Hey Ineta

      Thanks for commenting and sharing – this post has had so many people comment it’s quite reassuring that we’re not alone in this!

      I’m sorry that you’ve had so many flare ups – but the positive things to take away are that you now know what it is, and how to treat it, which is the most important thing.

      I visited a rheumatologist for some tests but they didn’t want to put me on any medication – obviously it’s different for every person but the potential side effects of the medication they were suggesting were too much for me to accept, so for now I’ll stick with the acceptance of Iritis and the treatment to cure it when it arrives.

      Please do let me know how you get on, though. If there’s medication that can help then it would be great to hear your experience.

      Please take care!

      Mark

      Reply
      • It is definitely reassuring that we aren’t alone!
        I really don’t want to go on medication, I worry about side effects but I will hear what the Rheumatologist has to say and make a decision based on the risks!

        Take care Ineta

        Reply
        • Absolutely weigh up the pros and cons from the Rheumatologist and go from there! Good luck with the appointment!

          Reply

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