does anyone have any experience of UVitis??

[stoppinattwo]

DS has had it for 4 years now............we have another hosital appointment in a few weeks and I wasnt to ask a few questions.

Any help??

sorry i meant wanted, not wasnt

is that a no then???

[dumb emoticon]
is this different from uveitis (the eye inflammation thing)?

nope thats the one[ grin]

I have had uveitis (iritis as it used to be called) quite a few times. What did you want to know?

Well DS has had it for 4 years now and everytime he goes there are always cells visible that shouldnt be there (these rogue cells)

Will they ever go, how worried should i be.

The consultant says things like "well the retina isnt damaged for now!!!"

I have been giving him pred forte (steroid eye drops) now continuously for the time hes had this condition. dont like giving him them as they can cause water pressure imbalance in the eyes.

Oh and he sadi if DS's eyes ever go bloodshot to go straight to A&E. so a bit worrying

How long have you had it tiggiwinkle and does it hurt.

I get it in acute episodes stoppinattwo. It starts as a vague ache (which becomes easy to recognise when you have had it a few times). The eye gets increasingly bloodshot and the vision becomes poorer in the affected eye. If you dont get treatment quickly, the pain becomes more and more severe, and you cannot stand any light as it hurts your eye.
You have to go to an eye casualty as soon as you feel the symptoms as untreated it can lead to glaucoma and your sight can be permanantly affected. Mine is associated with an auto-immune disorder (anklylosing spondylitis). It clears up completely between acute episodes, although having said that I have just been referred to hospital because the pressure is gradually going up in my eyes.

yes tiggy, they said DS's was probably linked to some immune response, like the cells of the eyes dont recognise cells that are there and attack them. they did test him for arthritis but that was all clear................just dont like all the steroids. So it doesnt really get better??, they said it may get to a stage where he only needs the drops once a week, but that is some time off, he has one a day atm but has been upto 4x a day with these other drops that force his eyes to dilate.

Sometimes this really gets me down, he never moans about it and doesnt say it hurts but does complain about sunlight, but seeing as he has had it since he was 4 i think he thinks this is normal. (one summer he spent every moment outside in sunglasses)

To see him now he is completely normal and very active I just hope we can get on top of it fingers xssed this appointment give us even less visible cells

I've had a couple of acute episodes of it -same experience as Tiggiwinkle other than mine hasn't been linked to anything else health wise.

When I've had it, at its worst point I was having to use drops hourly even through the night. However they are then gradually reduced over a period of weeks until you are down to 1 drop a day and then none. Throughout this time I've had regular appts at the eye dept of the hospital to check that its clearing up as it should.

TBH I wasn't aware that it can be a permanent condition that needed constant medication. Your poor DS .

Another person on MN with experience of it is StGeorge.

Betty, he has to go to the hospital probably about 4-5 times a year. one visit involves blood taken and pressure tests on the eyes.

I hate the thought that it may be something that is always with him, but when hes older as long as he can recognise the signs he will know how to deal with it. Blimey he copes very well now, he's almost at a stage now where he could do his eyedrops. I would let him if they wernt so important.

Last year we were in greece for 2 weeks... forgot the blardy drops MIL had to post them to our hotel!!!

I did not start getting it until I was in my twenties. The first time, no-one knew what it was. The GP sent me to an optician (who did not know!); he sent me fo an ordinary casualty department (they did not know) and I eventually ended up at an eye casualty. By this time it was very bad, and the drops would not work to reduce the pressure. I ended up having an injection into my eye-ouch, not nice at all! I have since made sure I get it treated as soon as possible.
I hope your DS can stop the drops soon.

It was our optician who spotted it, I hadfirst thought it was hay fever. and after a few weeks realised that there was more to it. Im hoping that at this appointment we can reduce the drops down to say twice a week. god that would be brilliant.

Major sympathy on the eye injection Tiggi. Had that twice now, first time I was close to vomiting. Not the pain so much, just seeing that bloody enormous javelin heading towards my eyeball whilst a nurse kept my face shoved into the restraint to stop me flinching

I have had it for nearly 20 years now (diagnosed in early 20s). I can sometimes go months between attacks, other times I am lucky if I make it to a week

stoppin - Try to push for further investigations if you can as there are many conditions it could be related too - mainly auto immune ones.

I am a little bothered that your DS has had steroids for 4 years. My consultant will not let me go past a month of constant use without changing the drug, or dragging me in for an injection.

Things to be aware of (sorry if I am teaching granny to suck eggs but I don't know what you know IYSWIM ) :

ANY irritation of the eye can set it off, so extreme care has to be taken with soap, shampoo etc. Also would recommend goggles for swimming. If he does turn out to be a life-long sufferer (and the bad news is, that is highly probable) he wont be able to wear contact lenses.

Another eye condition is common in iritis sufferers - blepharitis (infection of the lashes). It is not always obvious. Try bathing his eyes each morning in plain boiled water, single swipe with a fresh piece of cotton wool on each eye, downwards and outwards.

If I think of anything else, or you have any questions, yell.

That last bit should say

If I think of anything else I will post again ...

Thanks St george. I have constantly questioned the steroids, but the consultant has said without them his retina would be permenantly damaged as the harmful cells would begin to attack it. It does seem that way, as the time we did try and reduce them, it flared right up. At its worst, when first diagnosed the pupil could not dilate at all, it was stuck to the retina, he had these other drops that forced the pupils to dilate, (followed by weeks n weeks of sunglasses). this has never been this bad again as we keep it under control.

Each time we go back they say his eyes are a bit better, except on one occasion when they were considerably worse .

It is and immunity thing, in that his immune systen has got a bit confused, they dont recognise some of the cells in his eyes and attack them (consultant put it in nice easy terms for me)so he said we need to re educate them.

They have indicated he will not be free from it but there will be a time when the steroids can be reduced to a bare minimum

thanks for your post and if you do think of anything else please let me know

Probably atropine to dilate his pupils. I have to use them quite often. Got stopped by a copper once who thought I was high on drugs because of how my eyes looked!

Some sites you might find useful:

uveitis.org

RNIB, uveitis section

yes you do look a bit suspicious once youve had a few drops....

Thanks for those links..

ATM i think our consultant must be trying to keep DS at a level and gradually wean his steroids down..........to do it too quickly can cause a bad reaction and a flare up.

up to now he has no problems with his vision and does not complain of any pain or discomfort.

we have an appointment in the next few weeks I will read this information and get a few questions ready for the consultant

Just re-read your earlier messages.

My eye is always bloodshot during an attack so a bit surprised about the suggestion to go to A&E if it happens.

To be honest, I am so used to this now that I don't always use steroids to treat. I can grade the severity of an attack and will only use the atropine and steroids when really needed.

Unfortunately with long term use, your DS will be immuno-suppressed which puts him line for infections which in turn can lead to another iritis attack. You need to break the cycle. I found this out from experience.

If he is not in pain or discomfort then IME he could be weaned off the steroids a little quicker and not put back on them immediately unless he has a severe flare up.

Difficult I know because it is a child and not an adult who can understand that a little pain in the short term might be beneficial in the long term IYSWIM.

We went back today and the Doc only saw 2 bad cells in the left eye and one in the right eye.

She has reduced the streoid strength down but we still have to take them daily.

But at least it is better than last time

Just seen your thread for the first time. I've had a few acute flare ups of uveitis too. I'm not a long term sufferer like your ds or StG, I'm more like tiggi. I don't get pain with it, but the centre of my vision becomes blurred, eg if I'm looking at a word the middle 2-3 letters will be unrecognisable. I also see halos around lights - particularly car headlights and street lamps. If I get these signs I'm to go in for treatment.

The reason for adding here is to tell you of a technique I was shown to help absorbtion of the steroid drops. I was bfing at the time of my initial flare-up, so it was important that the drops stayed in my eyes, and not get into my system. I was shown to gently push on my lacrimal duct for about 10 minutes after time drops were used. This duct is just below the middle corner of the eye, so you use your index finger to gently push into the corner of your face and nose just below the eye.

This stops the steroids coming out of the eye so quickly, therefore enabling treatment to last longer, and so be more effective. I had to have drops every 1/2 hour, so it was a time consuming exercise, but helped to keep the dosage down. I should add in the end treatment didn't work so well in one eye, so I needed the injection (which meant an instant stop to bfing, but that's another story).

I wonder if its worth asking if pressure on the lacrimal duct might help your ds (I'd check with someone first before you do it in case its not suitable for children). It may help absorbtion of the drops, which means they might be able reduce his dose further. Just a thought. Of course, just ignore if you're doing this already!

thanks kinki, not heard of that before. DS is so good at taking his drops now, he is used to them, I will ask about that technique though, im sure he would be able to do that himself now.

we have to go back for reassessment in november now so when we go back i will remember to ask.

How long have you suffered from uvitis and are there times when you dont need the drops at all??

Ah, so this was why you had a shout out for me

Good news that they have reduced the dosage, although still a bit that they have him on daily drops. Maybe it is something to do with his age, my iritis didn't start until my 20s so it is possible the treatment differs because of that.

I do the pressure on the duct thing. You can see the difference immediately as there is less white gunk leaking out of the eye after you put the drops in.

thanks SG.........sory didnt mean not to answer my shout out. Have had a terrible back this week and keep having to go and lie down, and the painkillers im on mean i keep forgetting, you just reminded me i had shouted you

Just noticed this. My husband had this for the first time over 20 years ago - he then had an inflamed choroid and bleeding into the retina. After loads of tests nothing was found and he was given steroids. In last 7 years he has been diagnosed with sardcoiditis - a lung disease which can also affect the eyes and skin. He also had sarcoids which are small deposits of calcium under the skin in little oval patches which feel bumpy to the touch.

He's also had laser treatment for a small hole in his retina. He's also had a partially-detached retina which resealed itself and now has a copy of a digital photo from the retina clinic to show opticians to stop them freaking out when they do a check up.

It might be worth asking for the blood test to rule out sarcoidosis.

Hi just to update...............DS had a check up yesterday and there are no dodgy cells atm , we can reduce the stroids to every other day and then after 2 months they can stop completely for the first time in 4 years Yay!!!!!