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.

55 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)

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    • Hi, It’s so nice to read other people’s experiences of this and to know I’m not the only one. I’m currently suffering with my first case of Iritis, I’ve never experienced anything like it before, I woke up and felt like someone had punched me in the eye socket. I’m currently putting steroid drops in my eye 6 times a day and I’m due to go back to hospital on Friday for a check up and to get my blood test results. It’s starting to feel less painful, fingers crossed I have no underlying problem that’s causing it.

      Reply
      • Hey! Sorry to hear you are suffering – but please be assured it does get better (and normally quite quickly once you’re on the drops). Hopefully the blood test will come back ok – maybe you’ll be part of the HLA-B27 crew (which doesn’t mean a lot, but those who suffer with Iritis sometimes have this!).

        Just remember, any time you feel that pain again, get straight to the hospital and get those drops – the sooner you start, the quicker it goes. Leaving it too long can cause permanent damage, and none of us want that!

        Do let us know how it goes

        Mark

        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!

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  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!

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  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!

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      • 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.

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  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

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    • 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

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      • 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

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

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          • I had another flare up! Not sure why? I usually only get 1 or 2 a year! This year I had 4! I am currently on the drops! I went to see the Rheumatologist and he isn’t going to put me on immune suppressent drugs yet! I am relieved! He wants to try steroid pills for about 6 weeks to see if we can calm the body of inflammation! Also, he never found anything else other then H1AB27 gene and psoriasis which I don’t actually have any flareups of that! When I saw my ophthalmologist he seemed annoyed that the Dr didn’t put me on immune suppressent drugs! He said you will always have flarups and then you can get cataracts and Glaucoma! This is all so very frustrating! I went 5 years without a flareup, I am trying to figure out my triggers! Anyone think diet (gluten) can be a trigger? Ineta

          • Hey Ineta,
            Sorry to hear you’ve had another flare up! i do find that I can go months without a flare up, then have a couple in close proximity to each other. I’ve not done much research around the immune suppressant drugs but I do remember one Doctor saying it was quite extreme for Iritis to be treated via them. I also know someone who has flareups annually and the Doctor have her the drops in advance, so she didn’t need to go back to be checked.

            Trigger wise, I find it’s still linked to stress, and a lack of exercise (I sit at a desk all day, which makes my back ache and my joints become inflammed). I can’t say that I’ve linked it to any dietary things, but then I guess it’s very possible that an immune response to an allergy could trigger your immune system in other ways? I’m not too sure.

            This post is gaining a lot of traffic – so maybe someone will be able to help you!

            Take care
            Mark

  9. Does your friend get eye exams to check eye pressure or damage to the eye? I would prefer to just deal with this with drops and take my chances! My ophthalmologist is pushing for oral medication! So hard to know what’s right!

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    • As far as I know, they don’t have regular checks with the eye casualty, but they do with the optician. I’d really avoid oral medication if the drops manage it, I’ve heard the side effects can outweigh the benefits in some instances!

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  10. Hi Mark, Thanks for sharing your experience. I am Ketan, 36 years old. I recently got the Iritis and got the inline treatment which is having the combination of dilation drops and steriod drops. I am still on strriod drops (Maxidex) which is working well and now I am gradually reducing it. I stopped using dilation drops (used Atropine in my case) around 2 weeks back but
    my dilation is still not back to normal. Just wanted to check how long usually it takes for pupil to be back to normal. In my case it’s 2 weeks now and I am still waiting for it to be normal.
    Any inputs would be helpful. Thanks!

    Reply
    • Hey Ketan

      Sorry to hear you’re suffering at the moment! You’ve done the right thing by getting it checked, and the maxidex will help I’m sure.

      In terms of the dilation, that should normally wear off a couple of days after you stop using the drops. Any more than that is probably too long – and I would certainly contact your eye casualty department and check with them – one of the risks of Iritis is that the pupil can become stuck in a dilated / misshapen state – and that can cause complications. So to ensure that everything is ok, I’d advise that you contact them ASAP to be on the safe side! It could just be that your eyes take longer to return to normal, we are all different, but I certainly wouldn’t risk leaving it.

      Please do let me know how you get on

      Mark

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      • Thanks for your reply Mark. Your advise sounds very helpful to me. I will contact my eye hospital ASAP and get the eye checkup done at the earliest.
        Thanks again for your help!

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  11. Hi – thank you for sharing your experience of Iritis. I have had Iritis about 4 times in the past and not had a flare up for over 5 years now. I was on holiday 2 weeks ago and my right eye was sore & very bloodshot. I visited the pharmacy and they thought it was dry eye and have me some drops. After a couple of days I began to suspect Iritis. My eye didn’t seem to be as painful as other bouts of Iritis and although light sensitive again not as bad as before. The first thing I did when arriving back home was a visit to A&E – like you I have read it can cause permanent damage. I was put on Pred Forte drops just twice a day and then had an appointment at the eye clinic. I was told it was a viral eye infection which I’m not sure if it is the same as Iritis. I have to have the steroid Pred Forte drops twice a day for 1 week and then one drop for the 2nd week. I have the pupil dilating drops to use 3 times a day for 1 week. Also I have Glanciclover eye gel to use 5 times a day for 2 weeks. This is an antiviral gel to treat acute herpetic keratitis caused by viruses – a link to the cold sore virus. It lays dormant in the body and I would agree is caused by stress. Thankfully the redness has gone and it is not painful but I still have blurred vision. I can’t remember this before and I am worried that I may have some permanent damage. I already have some scarring – I’m not sure but the first time I had Iritis the GP treated me for Conguntivitus so there was a delay in me getting diagnosed for Iritis. I agree that anyone wondering if they have Iritis to get it checked ASAP.
    I am worried about the blurred vision and if it will gradually go away but suspect it may be scarring.
    I found your blog whilst on holiday and found all the information to be very useful. I haven’t had a blood test regarding Iritis but I haven’t had many flare ups thankfully. The first time I had Iritis was 30 years ago and nothing was said to link it with stress back then but every time I have had Iritis I can link it to stress.
    Thank you again for all your information and other people’s experiences with Iritis.

    Reply
    • Hey Marilyn,

      Thanks for your comment – I’m sorry to hear that you’ve had similar issues, though. The blurred vision could be because of the pupil dilating drops – I’ve found that even though the pupil goes back to normal, the vision isn’t quite the same for a few days after.

      If you’re concerned, though, as with all things related to eyes, then I’d contact your eye clinic again and ask them – the pred forte drops can affect the eye pressures, so it might be worth getting that checked out to be on the safe side. I don’t hesitate in calling them now if I have concerns!

      The link to stress, for me, is the main factor now. I can feel it slowly building up in the back of my eye over a period of time, at which point I know it’s time to get the drops (and try to de-stress). It’s a shame there are no clinical links to it, that I’m aware of, but by people sharing their experiences, we can make the conclusions ourselves and hopefully limit the flare-ups that we have.

      I hope your vision gets better soon, and thank you for sharing!
      Mark

      Reply
      • Hi Mark
        Thank you for your reply. I now have stopped using the pupil dilating drops and the next day found a vast improvement with my eyesight. I feel like a new person! I now have to reduce the steroid drops to only one per day but keep with the anti-viral gel 5 times a day. My pupil is almost back to normal too. I have also felt very tired this time and slept loads – not sure if this is the Iritis or my age!! I have to go back to the eye clinic next week so hopefully I will get dishcharged.
        Like you say we can all offer our experiences and help each other through. It is quite daunting when you first have Iritis and haven’t a clue what it is and the prognosis so your blog is a brilliant help to all of us.
        Thank you again
        Marilyn

        Reply
        • I’m really pleased to hear that the blurryness has started to subside! I also find the steroid eye drops make me tired, so that might be causing your tiredness too. Steroids can react in very strange ways, I notice a change in my mood too!

          Thanks again for sharing – and I hope you get discharged next week!

          Mark

          Reply
  12. Hi Mark,
    I have started taking methotrexate for my Iritis in the last month. Every time I had weaned off my maxidex eye drops,it would flare up again within weeks. It has affected my pupil which is now slightly larger than the other. This happened most of last year. I agree that stress may have been a factor and have changed jobs and hours to help this. I was wondering if people find fatigue being a big thing for everyone. I am hoping that I only need methotrexate for 2 years and then able wean off it.
    Julie

    Reply
    • Hey Julie. Sorry to hear you’re going through a prolonged flare up – I really hope it clears soon. Personally, I find fatigue a big trigger – I’ve had a major lack of sleep recently and it has (along with stress) definitely trigger Iritis to make an appearance. I’m back on drops again now but hopefully it’ll pass fairly soon. But yes, personally, fatigues a biggy!

      Thank you for sharing with everyone though, and I hope you are on the road to recovery

      Mark

      Reply
  13. Hi Mark,

    I’ve had uveitis since may 2016 after a massive bowt of stress. I’ve had it on and off in my right eye but after another period of stress in January 2022 I developed it in my other eye. Thankfully the doctors are so fast when you present symptoms of uveitis!

    It’s been good hearing your story as it’s so rare.

    Thanks,

    Sarah

    Reply
    • Thanks Sarah! Sorry to hear you’ve developed it in the other eye too now – hopefully that’s on the mend now!

      I’m forever grateful for the doctors, when I phone up with even the mildest of symptoms they see me straight away and discharge me with the relevant eye drops – I’m no longer worried by it, which in turn makes it easier to avoid!

      Please take care!

      Mark

      Reply
  14. Just been diagnosed and was left with many more questions than answers. Reading your blog has armed me with more info, and more hope. Thanks Mark! All the best to you and your co-bloggies!

    Reply
    • Thanks Candace! Sorry to hear you’re a sufferer, but I promise you that as long as you get the eye drops as soon as you have the initial pains, you’ll be fine! The worst thing you can do is leave it – my golden rule is to call even at the slightest flare up!

      You’ll be fine I promise, but any questions or concerns then please do reach out!

      Take care 🙂

      Reply
  15. Hi Mark,

    how often do you get flare ups? I’m really worried one day it will effect my vision 🙁 i’ve been at a constant state of stress since my first flare up in july.

    Reply
    • Hey Andrea,

      Firstly, stress is a bigggggg trigger, so try to do less of that (easier said than done I know!) At it’s peak, I was getting maybe 4 or 5 a year, but recently, I’ve managed to get that down to once a year, maybe twice at a push. For me, it’s all about knowing the early signs and doing things to prevent it (normally just getting to the hospital for early doses of the eye drops!)

      If it’s any consolation, I’ve had an uncountable number of flares since my first time, several years ago, and my eyesight hasn’t changed (once off the drops). As long as it’s treated, and you don’t leave it when it flares, you should be ok.

      Hope that helps ease your mind – but if you are concerned, speak to your Eye clinic 🙂

      Mark

      Reply
      • Yeah I’ve been getting them every 3 months roughly since July and am in the middle of one now…trying my best to stay calm but my vision is something i’m nervous about. Did you ever have anything abnormal come up on blood work? I only did a few tests and my CRP levels were elevated but i’m not sure if that’s just related to the eye inflammation.

        Reply
        • I totally get where you’re coming from with the nerves about eyesight – we only get one pair and all that! Early nights, strict drop times so you don’t forget, and some relaxation and you’ll get through this flare up.

          My bloods came back as HLAb27+, which is a gene that can lead to inflammation in joints – there’s no direct link I think, but inflammation is the main cause. I also suffer from back pain, and that too can be a trigger, so making sure I keep on top of that really helps too

          Reply
  16. Hi Mark,

    I stumbled across your site after googling Uveitis. My husband was just diagnosed with it last week. His left eye started to bother him 2 months ago with redness and stinging. His eye doctor told him it’s from lack of oxygen in his eyes from wearing his contact lenses. Told him to stop wearing the contacts and prescribed some steroid drops and it went away in 3 days.

    Last week his eye (same eye) started to bother him again. This time is a lot more severe with the redness and swelling. He went to a different doctor and they diagnosed him with uveitis. They prescribed steroid drops and the dilation drops. We had plans to go on vacation and the pharmacy didn’t have the dilation drop in stock but the doctor said its not necessary to do the dilation drops. So he was only using the steroid drops. About 3 days into vacation, he was in severe pain and had bad photophobia and we cut our trip short and came home early so we could visit the doctor. They instructed to do steroid drops every hour and dilation drop twice a day. It’s been 5 days now, his pain and redness are gone but his eyesight is still hazy. Is that normal? Although he said he’s unsure how much of the haziness is from the dilation drops.

    I have never even heard of Uveitis until last week and became very worried and concerned after googling it. I am even more worried about the underlying cause of his uveitis. He just did bloodwork today. He will have a follow up in 3 days with his eye doctor to check his eye again.

    I feel like our lives will never be the same. We have a small daughter. The doctor said it might be a idiopathic case and there’s no need to panic right now. But how long is it going to take for his eyesight to come back? Will it even come back? 🙁

    -Vee

    Reply
    • Hey Vee,

      Sorry to hear about your husbands experiences – Uveitis can be really intrusive sometimes, and most uncomfortable. A few things that might put your mind at ease:

      Firstly, the blurryness will go. The steroid drops are quite intrusive (at my worst flare up, I was on these for 8 times a day for a week, then 7 times a day for a week, 6 times a day for a week and so on). The blurryness starts to vanish as you taper off the drops, so 5 days and still blurry is quite normal from my experience. The main things are that the redness and pain are going, and the sensitivity to light is fading too. The dilating drops just help the steroids reach the right places.

      Secondly, the bloodworks might not show anything – mine came back with a show on HLAB27+, which means my joints are prone to inflammation (and hence, my eyes suffering). However, knowing that changed very little for me, and in fact the diagnosis hasn’t resulted in any new treatments or anything, when I have a flare up the best cause of action is swift trips to the hospital for the eye drops!

      Finally – I promise you once this flare is over and his eyesight is back to normal, it’ll get easier. Now he knows the signs, and knows what it is, he won’t hesitate in going straight to the hospital and telling them what it is. The key to Uveitis is speed – if you leave it too long, the damage is can be permanent. I now know that at the slightest pain, starting the steroids can mean 2 weeks of mild treatment, no redness, and it goes. I can’t emphasise how important this is – never ever feel like you (he) is wasting a GP’s time for a very mild eye ache, trust me, they will get it seen to and sorted asap.

      I had the same fears when I first had it, and there was very little useful information online, just a lot of scary information. I’m now many years in to dealing with it, and it’s really not something I think about at all now, until I feel that twinge in my eye, and I get it sorted.

      A few triggers I’ve noticed: Stress (work, family, and strangely, vacations!). Stress isn’t always a bad thing happening, you’d be amazed how many fun things can trigger stress! So it’s crucial you husband realises stress and talks about it / manages it. Bad posture triggers mine too, a few days sitting in a bad chair at work can upset it. And finally, the biggest thing to help ease the risk of it coming back – exercise! Release those endorphins 😉

      I really hope this helps ease your concerns, and please don’t hesitate to reach out in the future. Let me know how it goes.

      All the best,
      Mark

      Reply
  17. Hi Mark,

    Thank you for sharing your story. I was Googling this at 2am as my 2 year old daughter has just been diagnosed, following a hospital dismissing our concerns for nearly a month. We are now petrified that she may not see properly again and have lots of questions about the future as she is so young.
    Great to hear that you manage it so well. My wife and I are at the start of the journey, and any tips you have would be welcomed.

    Mike

    Reply
    • Hey Mike

      Firstly, I’m so sorry you had to wait nearly a month before being listened to. That’s awfully bad from the hospital.

      Out of interest, have they now diagnosed and prescribed drops / ointment to help clear things up? As long as the pupils aren’t stuck, then I think things should be ok to return to normal.

      My main advice would be patience – eye drops are bad at the best of times, the ones prescribed could be steroids and they sting! I know it’s difficult with a small kid as we had to apply eye drops to our son at a similar age, but don’t be afraid of wasting them if you miss, stockup and make sure the drops go in properly – it can clear up really quickly once they start working. And when you think they’ve done the job, be sure to carry on for the required course.

      I wouldn’t worry too much – I’ve heard from people who have only had one or two flare ups and nothing more – on a similar note mine didn’t even start until my 20s, so it’s very possible that she may never experience it again – I’m no Gp but I’ve heard many positive stories.

      Please do keep in touch and let me know how you are all getting on – good luck with the treatment, lots of cuddles and treats for your daughter after the eye drops should do the job!

      Thanks
      Mark

      Reply

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