Uveitis

MrO

Hi - Just wondering if anyone out there has dealt with this?

I've gone through the steroid route and seems to be recurring so now Im looking at a couple of years immuno-suppresants

Cheers

0lddog

Has any attempt been made to establish the reason for this. Frequently its associated with autoimmune diseases ( have a look at
http://www.merckmanuals.com/home/sec20/ch232/ch232a.html )

Until I discovered the joys of living gluten free I suffered episodes of acute anterior uveitis. As time went on the episodes increased in frequency and duration. The pain was very, um, unpleasant! Any form of normal life ceased when uveitis struck.

Have you come across : http://askcsf.yuku.com/ ?

Bolddog

MrO

Thanks a lot. After bloodtests etc. there is no clear reason for it (idiopathic?) so the assumption seems to be it's autoimmune.

I never knew there was link between gluten and uveitis? Interesting.

flossie

Hi MrO,

Yep, i have had this since i was 7, so 'celebrating' 21 years of it this year! I have had no reason for the uveitis, and (luckily) it stayed mostly within the one eye. I was terated intensively with steroids when younger and developed some nasty side effects over the years, but once it is controlled you can manage a relatively normal life.

What treatments are you on? I am now treatment free, and have been discharged from hospital as i can self-diagnose, in that i know when a flare up is happenign so i can refer myself back to a hospital when i feel the need.

0lddog

Meant to also include an article that the Irish Times ran recently :

http://www.irishtimes.com/newspaper/health/2011/0510/1224296588010.html

( Are you going to The Eye & Ear ? )

BTW in my case nothing showed up on blood tests either.


Olddog

crazy_janey

I have been diagnosed with uveitis for just over 2 years now. I spent a week in the hospital while they tried to figure out what was causing it, they never found anything. I have it in both eyes and it was fairly bad when I went in (I was avoiding the doctor!) They put me on a super high dose of steroids and i got all the horrible physical side effects (weight gain, stretch marks etc) but nothing too serious.
For almost a year it was a constant visit back to my doctor with no progress and just keep taking the steroids. I then found a specialist in Carlow who Iv been seeing for about 18 months.
Im on immunosuppressants along with a low dose of steroids. I dont really see how my situation can improve from where I am now. I keep feeling brave and decide to tell my parents I tired of drugs but I never have the courage!
Ask your doctor loads of questions and make sure they give you full and honest answers.

flossie

Crazey Janey, do you mine me asking where in Carlow there is a specialist? I live here so always handy to know of one!

OP, have you been referred to a rheumatologist? Uveitis can also be an indicative symptom of rheumatoid arthritis.

I have been tested for HLA b-27 (negative), Coeliac, tumours etc over the years but nada. Oh well! Not sure how active the flare up is at the moment, but if you keep on the steroid treatment there is a good chance it will get under control!

crazy_janey

The specialist in Carlow is based in Huntington Court, near the garda station (I think). Im not sure if I can give out his number but PM me and I will send it on.

MrO

Hi Janey,
I think that I'm seeing the same specialistas you but at his clinic in Lucan (the hermitage clinic).


Hi Flossie,
What kind of uveitis do you get? I'm on no treatment at the moment but I was taking steroid tablets up until recently. I think its flaring up again in my right (Intermediate uveitis) so I suspect I will be put on the immunospuressants now? I didn't realise you could judt keep trying to control it with steroids.

I got the impression from the specialist that they were a bit hard on the system....although I dont much like the sound of a few years taking immunosuppresants!

flossie

I wouldn't say my case has been ideal for dealing with steroids! I developed cataracts as a child due to aggressive steroid use, which resulted in no lens being reimpanted, lens holders being removed and being blind in the eye until i was 19, when i had a lens reinserted and resulted in double vision, which was treated initially with Botox and then squint surgery. Then the front of the eye, which was damaged by initial surgery, had to be reconstructed as i was getting burning on my retina, and so i now have 3 stitched holding the front of my eye together! That;s it in a very small nutshell!

Does anybody find that stress flares up the eye?

MrO

I'm not sure about the stress issue - I'd like to think it was a factor but in reality I'm not sure that it has anything to do with it

crazy_janey

The immuno suppressents Im on aren't too bad. Im havent had any bad reactions from them (It differs from person to person though) and just get blood tests done every 6-8 weeks to check my liver is working properly.
I was told at my last visit that the immuno suppressents can cause loss of bone density and was given drugs for that but they caused me problems!

Id ask the doctor about the long term implications of immuno suppressents before leaving the office! Im only meant to be on them for 2 years so fingers crossed I can finish them in August!

alexjk

I used to have this in both eyes but it spontaneously disappeared from my left eye. 4 years on and it hasn't fully left my right eye, which now also has a cataract from the steroids. Getting the cataract removed next month but I'm ultimately hoping to get the whole eye removed and getting a prosthetic.

I've definitely had an improvement with the swelling since I've gone gluten-free but my eye is still blood shot and painful very often.

LadyMayBelle

Stumbled on this thread by accident, but I have been working with a child who has a very aggressive form of this and the family are at their wits end trying to find support for the child (in UK). I have searched along side them and the only organisations out there cater for adults not children aged 8,9, 10 etc, even the specialists at GOSH can’t help…is there any chance there is something in Ireland or Europe that anyone here can suggest to me that I could pass onto them?

flossie

LadyMayBelle wrote: »

Stumbled on this thread by accident, but I have been working with a child who has a very aggressive form of this and the family are at their wits end trying to find support for the child (in UK). I have searched along side them and the only organisations out there cater for adults not children aged 8,9, 10 etc, even the specialists at GOSH can’t help…is there any chance there is something in Ireland or Europe that anyone here can suggest to me that I could pass onto them?

LadyMayBelle,

I was a child living in the UK when first diagnosed. I was under the care of Larry Benjamin at Stoke Mandeville Hospital (Mods, hope it's OK to post that). Don't believe there are any support groups for children (well, not in my time anyways!)

Ensure that the child is made full aware of the situation, what treatment, why it is being given etc. I was kept out of the loop for a good while and it was awful, confusing, and resulted in me not wanting to take meds as i didn't want to be 'different'. The opthalmologist should be able to assist by showing models of the eye, talking etc.

Anybody here know about the Retisert implant? I ubnderstand it is implanted into the eye to allow slow release steroids over about 3 years.....I don't need one now (touch wood) but could be somethign of interest to others.

LadyMayBelle

flossie wrote: »

LadyMayBelle,

I was a child living in the UK when first diagnosed. I was under the care of Larry Benjamin at Stoke Mandeville Hospital (Mods, hope it's OK to post that). Don't believe there are any support groups for children (well, not in my time anyways!)

Ensure that the child is made full aware of the situation, what treatment, why it is being given etc. I was kept out of the loop for a good while and it was awful, confusing, and resulted in me not wanting to take meds as i didn't want to be 'different'. The opthalmologist should be able to assist by showing models of the eye, talking etc.

Anybody here know about the Retisert implant? I ubnderstand it is implanted into the eye to allow slow release steroids over about 3 years.....I don't need one now (touch wood) but could be somethign of interest to others.

Thank you. There is sadly, still no group or network for childen especially with such an aggressive type; she is rapidly losing her sight:(
I'll try contact that person, much appreciated!!

flossie

LadyMayBelle wrote: »

Thank you. There is sadly, still no group or network for childen especially with such an aggressive type; she is rapidly losing her sight:(
I'll try contact that person, much appreciated!!

I know Mr Benjamin is known as one of the best eye specialists in the UK. Good luck with it.....and pass on the best wishes to the family.

ilovemakinnoise

I've had Uveitis now for 5 years and I've had every treatment under the sun. I was a public patient in WRH and received great care but it's still reoccuring. Again they never found a cause. I started on steroids, then had a localised injection in my eye. I then had cataract surgery, laser surgery and more steroids. Last year I had the oxurdex injection and was on methotrexate but was taken off it cause of liver problems. I had the oxurdex injection again a month ago and there hasn't been much change.

Today I went to the Carlow Eye Clinic, I found Michael Gallagher on uveitis.org. He is a Uveitis specialist who trained in the UK and USA. Only 1% of the Irish population has Uveitis so it is very important to see a specialist. He has clinics in Carlow, Lucan and Mullingar. I had my first appointment today and feel great to finally have a plan in place.