Uvitis

Savanna

Hi Bargain Rzl, Savvy_sue, Atomised and Horace for your replies, merging of threads, advice of other threads and imformation.
Although I certainly wouldn't wish for anyone to suffer from this, it would be good to chat to other sufferers as I don't know anyone else with it, and although friends and relatives try to understand, they can't of course know what it's really like.
I partially lost the sight in my left eye about 5 years ago due to a bleed onand damage to the retina caused by undiagnosed high blood pressure.
Then about 18 months agothe uveitis started in both eyes but worse in my previously good right eye. It is chronic in the middle and the back of the eyes and is always there to a certain degree causing floaters and small bleeds.I have also been getting increasingly more and more frequent flairups of acute uveitis all through the eyes causing severe irritation, eye pain,headaches and a pronounced lack of any clear vision.
I see Mr Ansah at Plynouth Royal Infirmary. He thinks my problem is auto-immune, possibly sarcoidosis. I have had steroid injections into the space around the eyes and 20mg og prednisolone, but this no longer holds the condition, so at present I'm on 60mg of prednisolone with a view to also being put on more immuno-supressants when I go back in a week and a half.
I am employed part time in a pre school, but am finding it increasingly difficult to cope and am worried I may have to give up work, which only being 43, I don't really want tp do.

Savanna

Sorry, hit wrong button.

Was just going to end by saying sorry for such a long post and rambling on a bit. Will try and keep up on here but is taking me a while to read and write so please bear with me.

Horace

Savanna - I have every sympathy with you, Uveitis is horrid. When I get flare ups my eyes feel as though acid has been chucked in them and please don't mention the floaters, I have them permanently and I have noticed that I start to watch them:eek: I get flashing floaters from time to time and these are the most irritating and I have been told by my consultant that if I get them and they don't go away then I should get myself to the hospital pronto because it could be my retina detaching:eek:

I take prednisolone eye drops 1% once a day to each eye but if I get a flare up then I will self medicate and switch to taking them hourly which I gradually reduce back down over time (several weeks). I mention it when I go to the hospital. The Prof that I see is used to his patients self-medicating as long as we let him know of course.

Why should you give up work? Speak to the Access to Work people and your employer so that they can make reasonable adjustment.

There is a support group based in Scotland and they have a website:
https://www.uveitis.net

I have never used them but according to my consultant they are very good.

Sandy_Beech

Atomised wrote: »

I had it three times in 18 months about 4 years ago ,not had it since and went away after I used drops from chemist. I didn't know you could have it permanently. Hope you feel better soon

Snap, very simialr to above.... I have had it 4 times in approx 5 years!!! I know what your going through. But like Above op said, i also am not aware you have it permanently.

Can i just ask, i had a boold test, and (last time i got it feb2008 gone now), and one test showed a irregular count on a paticular line! But it's all gone away now so, like the old saying...............)! So have left this, perhaps until the next time... Hope not though!!!!

Savanna

Horace wrote: »

Savanna - I have every sympathy with you, Uveitis is horrid. When I get flare ups my eyes feel as though acid has been chucked in them and please don't mention the floaters, I have them permanently and I have noticed that I start to watch them:eek: I get flashing floaters from time to time and these are the most irritating and I have been told by my consultant that if I get them and they don't go away then I should get myself to the hospital pronto because it could be my retina detaching:eek:

I take prednisolone eye drops 1% once a day to each eye but if I get a flare up then I will self medicate and switch to taking them hourly which I gradually reduce back down over time (several weeks). I mention it when I go to the hospital. The Prof that I see is used to his patients self-medicating as long as we let him know of course.

Why should you give up work? Speak to the Access to Work people and your employer so that they can make reasonable adjustment.

There is a support group based in Scotland and they have a website:
www.uveitis.net

I have never used them replacing ot with some fluidbut according to my consultant they are very good.

Thanks for that Horace, I'll have a good look at that site.
I have every sympathy with you too, especially as you've had it longer and have had to have operations. My consultant's just mentioned an operation he thinks may help...involves taking the jelly out of my right eyeball and replacing it with some fluid and then the eye will gradually replace the jelly again. My consultant says this won't cure the uveitis, but hopes it may slow the attacks and make them less aggressive, for a time at least!
I do use prednisolone drops and dillating drops to stop my lens sticking when the inflamation is in the front of the eye too, but the worst of the problems are in the middle and particularly the back of my eyes, where all the imflamation is causing a great deal of fluid to build up on the maculas & causing damage to my central vision all the time

madmaxlady

Oh wow, I'm so happy to hook up with other uveitis sufferers! Wish we didn't all have to suffer it though.

I'm 48 now, and have had continual uveitis since I was 24. I was told it can burn itself out within 15 years, but it didn't in my case. After using Pred Forte drops for years I developed cataracts in both eyes, which I've now had fixed, and when I had my left eye done the surgeon did the op you were talking about when they remove some of the jelly and replace it with fluid. It was brilliant! I couldn't stop looking at glasses of water and marvelling at how clear they looked! Sadly the effects didn't last that long, but it was great while it lasted.

Twice now the uveitis has become so severe that I've had to stop driving for up to six months at a time, but I've become quite confident over the years that the hospital will always get me up and running again.

I'm currently having 6-weekly doses of chemotherapy for my eyes and waiting for approval to go on intravenous anti-TNF therapy, but it's quite a wait because it's an expensive medicine and NICE haven't approved it for anything other than rheumatiod arthritis. Over the years I've tried oral steroids, mycophenolate, azathioprin and cyclosporin, but all of them make me so nauseous that I think I prefer the uveitis!

It's a !!!!!! of an illness isn't it. Mine is connected to Wegener's Granulomatosis (!) which is an auto-immune problem. Stupid darned immune system, can't even recognise it's own body parts!

But it's wonderful to find I'm not alone.

Happy to chat to any of you about the treatments I've had. Four operations so far, and no doubt more to come.

Horace

Hi Madmaxwoman and welcome to the forum.

I sure hate uveitis - it can be a right pain. I think though that there are people on here who say that they just go to the chemist and buy some over the counter meds and it clears up are getting confused with conjunctivitis which can have similar symptoms and is far easier to clear up than uveitis.

My uveitis has caused secondary glaucoma which in turn has given me cataracts, the one in my left eye (the most myopic one) being particularly bad but as I have been told that my vision won't recover (I have no central vision whatsoever), I decided that I didnt want the op but I may have to have it for medical reasons:rolleyes: My right one is not so bad so I won't need it removed for several years:j I won't be awake either when they operate - I nearly thumped the anaesthetist in December when he was administering the local anaesthetic so never again:eek:

My consultant has previously muttered about removing the fluid from my eye and replacing it with gel but thankfully he has changed his mind especially as I have a good eye (still myopic) and he doesnt want to wreck the sight in it. I had to have some compression sutures put into my trabulectomy in my right eye in March only they worked too well and pulled my cornea out of alignment:mad: I ended up not being able to see, I couldnt do anything for a whole month when they operated to undo what they had done:rolleyes:

I think that the human body is a strange thing - why does it suddenly decide that the iris is a foreign object and feels the need to attack it

almo81

I have only just found these post's on here, I too have uveitis and attend Moorfields Eye Hospital quite regularly. It's a relief to hear from people that understand, my family do their best and i try and hide alot of the symptoms from them as i don't like to worry them (they have enough of their own problems). I have constant flashing in my left eye, I have lost the left side of vision in my left eye and the central vision in my right eye. Thankfully I can still drive but if it gets any worse this will change!!
When I first started attending Moorfields 4 years ago I would always see Prof Lightman or Miss Okravi (not sure if spelt correct) and had continuity but over the last 2 years I have to see whichever consultants are there and have to explain the whole situation from the start and each one give me a different reason/response etc. which can be quite frustrating.
I've also had MRI scans, lost count of the amount of blood tests, 7 lots of electrodiagnostics and the worst ever a lumbar puncture!
I started on 80mg steriods 4 years ago and gradually came off them over 6 months, horrible side effects but my partner was really supportive. was free from them for 8 months then put back on 80mg for another 7 months.
Got to go back to Moorfields in December so i'll wait and see what that brings. Thanks to everyone on this forum!!! Sorry its soooo long!

Horace

Hi Almo and welcome

I visited Moorfields once, I was down in London and had a terrible headache which refused to go away - with me I never know if its raised eye pressure or just a headache so I always trot along to a hospital to get my pressures checked. Thankfully it was just a headache but I did get told off in A&E for not going sooner:rolleyes:

I see Prof Murray in Birmingham or one of his team so although I don't always see him I do know that my notes are put under his nose. He is great, if I have a problem I just send him an email - he even responds when he is on his hols:eek: He has become like a friend if that is possible.

Thankfully I have never had a lumbar puncture or anything particularly nasty done - although I have had ultrasounds done and once had this wierd photo taken which basically is a lot of rainbow colours which left me being able to see a rainbow for the rest of the day:rolleyes:

My next appointments are 1 December - for an eye test so that I can have reading glasses (I am wondering what I will be given free this time - the last time I was given a small magnifier) and then on 17 December to see Mr Sung, Prof Murray and a Field Vision Test (yawn). Thankfully my uveitis seems to have settled down but I think stress as a lot of bearing on it, I have been stress free for a while now and there has been a noticeable difference in my uveitis:j

Good luck for your next appointment.