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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

General health

Iritis/uveitis -anyone got any experience?

28 replies

BettySpaghetti · 28/04/2006 12:01

3 years ago I had iritis in one of my eyes. I can't remember how it started other than to begin with I thought (as did the GP) it was conjunctivitis.

Anyway last night and today one of my eyes hurts in bright light and is looking a bit pink. I'm 99% sure its not conjunctivitis but not sure if its iritis/uveitis again or just sore from a foreign body or something.

Anyone got any experience? (especially if they've had it more tham once as I know this can be an indication of an underlying illness/problem).

Thanks

PS - I know I need to go to the GP really but I think I'm just hoping I won't need to as its PITA if they send me to Opthamology as DD's at school, I have DS with me, I'll need to drive there and might not be allowed to drive back cos of eye drops, DPs not working nearby etc etc....sorry wibbling on a bit now

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sAinTgEOrge · 28/04/2006 12:11

I have chronic iritis.

Does your eye hurt more as you move from dark to light (or vice versa)?

Do you have a headache, or soreness in the temple, eye socket and cheekbone on that side?

BettySpaghetti · 28/04/2006 12:17

Thanks for replying.
My eye hurts if I go from dark to light eg going outdoors into the sun or looking towards the window. Its not as bad as I remember the iritis being before but I'm wondering if its early stages?
No headache but possible ache around eyesocket ( but that might be because I'm looking for it IYSWIM!)
How long have you had your iritis? By chronic do you mean you have it recurring or a bad bout of it?

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sAinTgEOrge · 28/04/2006 12:24

Had it for about 11 years. By chronic I mean it is a recurrent problem, along with a few other auto-immune conditions that I have. Even something as simple as an eyelash curling inwards can set off an attack.

The main cause of pain in iritis is when the pupil contracts/dilates in reaction to light.

It sounds like a mild attack. Unfortunately, as you say, your gp is unlikely to give you anything for it - they insist on a slitlamp exam.

sAinTgEOrge · 28/04/2006 12:27

I am lucky (!) that my GP has agreed to prescribe my meds without repeated visits to the op clinic as I have had the condition so long he trusts me to self diagnose.

The main difficulty is that there is another, (unrelated) condition that has similar symptoms but which would react very differently to the steroid treatment that is routine for iritis. Hence the insistence on the slit lamp exam.

BettySpaghetti · 28/04/2006 12:36

Recurrent over 11 years! That must be a nightmare!

I remember how awful it was last time -really painful, didn't know what to do with myself other than sitting in darkened room with sunglasses on. Also remember setting my alarm for every 2 hrs during the night to put the drops in for a while.

How often do you get attacks? (if you don't mind me asking)and how do you get on with everyday stuff when its at its worst?

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LIZS · 28/04/2006 12:40

poor you. Had iritis when first started work and it was excruciating. Had no gp then so went straight to Moorfields Out patients and was sent home with drops.

sAinTgEOrge · 28/04/2006 12:43

It varies.

At first it was just one eye, so I could cope with wearing a patch if I did have to go out.

Now I have it in both eyes although - touch wood - it doesn't often flare up in both eyes at the same time.

I can go months between attacks or have 3 or 4 attacks in as many weeks, lasting 2-3 days each. Some are just minor flare ups which I don't treat, others are agonising attacks involving trips to A&E for emergency treatment. When it is that bad I just have to rely on family and friends to cope with things for me as I sit in a dark room wearing wraparound shades, moaning quietly to myself in a pathetic manner.

BettySpaghetti · 28/04/2006 12:47

Get better soon SintGeorge.

what makes it worse I think is that with other illnesses you can at least spend time lying on the sofa watching TV/reading/mess about on computer etc but when its your eyes it limits you so much.

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sAinTgEOrge · 28/04/2006 12:50

Thank you. Unfortunately I am stuck with these eyes so I just have to get on with it.

I do walk around a lot like this a lot.

BettySpaghetti · 28/04/2006 12:51

bet you get some funny looks from people thinking you're coming on to them

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BettySpaghetti · 28/04/2006 18:39

Quick up-date - phoned the surgery this afternoon. There were no appts left but I asked to speak to a GP for advice and as soon as I mentioned iritis they agreed to see me straight away.
He thought it was mild/early stages, spoke to opthamology dept. at nearest hospital and after reading my notes they want to see me 8pm tonight.
Hopefully should be not as bad as last time.
Really feel for anyone who gets this regularly.

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sAinTgEOrge · 28/04/2006 18:49

Better than a clinic appt - you tend to get seen a lot quicker this way. Despite having a late appt, don't forget to take your sun glasses. If they put dilation drops in you will want them afterwards.

24 hrs of prednisolone drops and you should be fine.

Best advice I can give you is to take great care whenever you get something in your eye, however small. Try to remove it as quickly as possible to minimise the irritation. Unfortunately once you have had iritis you are much more likely to have it again in the future.

Good luck x

BettySpaghetti · 29/04/2006 09:26

Thanks SaintGeorge
Well I had the appt and it is iritis again.However at least this time it was caught early and is nowhere near as painful (last time because of the initial misdiagnosis as conjunctivitis it was probably a week into it).

I'm on hourly Maxidex drops until tonight and then gradual reduction over 3 weeks. Also drops to dilate pupil 3x daily and some night time gel.

They will contact me with a follow up appt for next week when I'll slao have blood tests and an Xray to see if its linked to anything else.

The journey back from the hospital was interesting though -it was 10pm by then, so dark, and the dilation drops meant I was seeing all sorts of psychedelic patterns coming off the car lights! (DP was driving I hasten to add!)

Thanks for your advice and support -it helps to talk to someone else who knows what its like

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sAinTgEOrge · 29/04/2006 11:45

Wow, I am impressed with the follow up!

11 years and I am still pushing them to admit it may be one of many symptoms of something bigger.

I have more than 5 individual conditions which are auto immune related and the doctors still keep insisting it is 'coincidence'.

lol at the journey back. Glad you mentioned DP was driving

BettySpaghetti · 29/04/2006 12:11

Thats ridiculous that they won't "admit" it could be related especialy from the sound of your medical history!

Here, they seem to run basic tests when you get it a second time. The Opth. did ask lots of questions that I remember from last time about back problems, bowel problems, joint stiffness etc. The GP even told me to come back to him if the hospital didn't refer me on for further tests. Who do you tend to see when you have attacks?

One thing that sprung to my mind last night ( although I do admit I don't know a huge amount about iritis and other conditions at the moment) was could SPD be related in anyway? It is to do with joints and ligaments after all.

I didn't get SPD with DD 6 yrs ago but I did with DS 2 yrs ago -in between I had iritis. Everyone rasised their eyebrows when I had SPD second pregnancy and told them I didn't have it first time.

Like I said, just a thought (from a non-medical person )......

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sAinTgEOrge · 29/04/2006 12:31

Yep. I never had a diagnose of SPD but I did have major ligament problems in my 2nd pregnancy.

I normally self treat the iritis unless it is a major attack, then I visit the local eye hospital. They just have me listed as a 'chronic sufferer'. They did ask me all those questions at the time of my original dx, but other conditions have come to light in the years since.

Funnily enough I was doing some research yesterday when I first saw your thread. I want to arm myself with as much info as possible before going back to my GP. There is a new guy at the practice who seems a lot more on the ball so I am going to try to see him. I have my own ideas about what the root cause might be but I am wary of looking like a hypochondriac if I go in saying 'I found this on the internet'.

sAinTgEOrge · 29/04/2006 12:32

Oh and stretch marks. My physiotherapist (for my back problems) said that lots of stretch marks like mine could also be related to the ligament problems.

BettySpaghetti · 29/04/2006 13:42

I know what you mean about the internet thing -GPs must dread the words "I was looking on the internet....".

I think you're doing the right thing going back to your practice and trying to get someone to take notice. OK it won't "cure" the iritis but at least it might help if they find out the links between your different problems/conditions and make at least one of them more managable.

Good luck.
Let me know how you get on.

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BettySpaghetti · 31/05/2006 13:07

Bumping this back up as I've got my follow-up appt with the opthamologist tomorrow and should get the results of the blood tests and Xrays (to see if the iritis/uveitis is connected to anything else) -bit worried though in case they do reveal a problem.

Has anyone else had any experience of this?

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SaintofGeorgia · 31/05/2006 13:17

Hi Betty, me again

Guess what I have today - correct! My right eye is a fetching shade of blood red and I feel like someone has shoved a poker through my cheekbone.

I'm sure you'll be fine. Even if they do turn something up, at least it means you will get treatment. Let us know what they say.

I have no update as I have basically been a lazy mare and not gone back to the GP again.

BettySpaghetti · 31/05/2006 13:25

Can't believe you've got it again! It would do my head in (and I've only had it twice!).

I know its silly worrying but I guess its just because the appts suddenly here and I keep thinking...Christ, they could tell me something that has dramatic long-term effects -something that could affect me for the rest of my life!

Sorry to sound so dramatic! Especially when you've got it so bad. Are you going to go and try to get some tests done?

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SaintofGeorgia · 31/05/2006 13:48

Probably next time I go to the docs for something unrelated I will mention it again.

To be honest I am so used to having it now I just accept it as 'the norm'. As my attacks go this one is relatively mild.

Anyway, it's a good excuse to have the kids running around doing stuff for me for a change

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SaintofGeorgia · 31/05/2006 13:49

Sorry for accuracy that should be or better still the sunglasses one from MSN.

chestnutty · 31/05/2006 14:13

Just found this thread and found it very interesting.
My dd(15) has had uvetis for the past 3 years. Twice they have taken her off the drops but it just comes back. At the moment she does a drop twice a week and it seems to be ok.
She's had lots of blood tests including one for tissue type that had to go to a regional centre and X- ray for TB. All have come back negative except an autoimmune one that was "weakly positive".
I didn't know about the eyelash thing. Being a teenager she wears lots of masara.

BettySpaghetti · 31/05/2006 14:18

Your poor daughter chestnutty. I'm not sure whats set mine off but St George definately seems to be awaare of things like that setting hers off so I guess fibres from masacara could trigger it?

Its interesting about the drops twice a week -I'm down to twice a day at the moment and hopefully once a day next week and then none (at its worst it was hourly, including through the night!)

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