Uvitis

Paparika

I'm a sufferer, anyone else.

How do you live with suppressing your immune system?
How do you cope with the drugs..

I've lost so many jobs through illness, even got sacked from NHS for being off sick too much, lol

I am fortunate to be in a secure job now with very understanding bosses, although they have on my personnel record that i am disabled (I don't agree with this, but if it keeps me in my job...)

absolutebounder

Paparika wrote: »

I'm a sufferer, anyone else.

How do you live with suppressing your immune system?
How do you cope with the drugs..

I've lost so many jobs through illness, even got sacked from NHS for being off sick too much, lol

I am fortunate to be in a secure job now with very understanding bosses, although they have on my personnel record that i am disabled (I don't agree with this, but if it keeps me in my job...)

Uveitis strikes in different ways. Is it definitely caused by your immune system attacking your eye?. I dont like the use of drugs unless absolutely necessary plus supressing immune system can lead to other things. How did the uveitis start?

Paparika

absolutebounder wrote: »

Uveitis strikes in different ways. Is it definitely caused by your immune system attacking your eye?. I dont like the use of drugs unless absolutely necessary plus supressing immune system can lead to other things. How did the uveitis start?

Yes you are right it is my immune system working too well and see's my eye as the germ.

I had no idea how i got it, although i started to suffer about 6 years ago.
Had a very nasty case of it last year where i was forced to have 6 months of steroids, and again this year another months worth when i lost vision completely in my left eye (fortunately it finally came back)

I would love to know if there is such a thing as immune system transplant / replacement!!

I've had so many tests, MRI's Lumbar punch, various blood tests.. etc.

absolutebounder

Paparika wrote: »

Yes you are right it is my immune system working too well and see's my eye as the germ.

I had no idea how i got it, although i started to suffer about 6 years ago.
Had a very nasty case of it last year where i was forced to have 6 months of steroids, and again this year another months worth when i lost vision completely in my left eye (fortunately it finally came back)

I would love to know if there is such a thing as immune system transplant / replacement!!

If there was it would have the characteristics of the donor and probably attack more than an eye

I've had so many tests, MRI's Lumbar punch, various blood tests.. etc.

I cant give much advice other than it has been known that there is a mind / body connection when it comes to the immune system. You might try reading Quantum healing by deepak chopra.

Paparika

I'll certainly consider it :T

katylittlelady

Hi Paparika!

Just read your thread although its a couple of weeks old! I have uveitis also caused by sarcoidosis and have had for 10 years! This is the first year I have had real problems with work as have had to start on immuno-suppressants and it is really taking its toll! I'll PM you to have a bit more of a chat about it! Will be interesting to hear from a fellow sufferer as don't know many people with the same condition! Especially around my age!

katylittlelady

Hi Paprika!

Just read your thread although its a couple of weeks old! I have uveitis also caused by sarcoidosis and have had for 10 years! This is the first year I have had real problems with work as have had to start on immuno-suppressants and it is really taking its toll! I'll PM you to have a bit more of a chat about it! Will be interesting to hear from a fellow sufferer as don't know many people with the same condition! Especially around my age! I have had uveitis since the age of 17 and started immunosuppresants january last year and have really started to struggle since but that is mainly because of my job! What problems have you encountered?

Cat

Savanna

Hi

just wondering if anyone else suffers from Uveitis and/or
Macula Odema.I have just been registered Severely Visually Impaired because of this.

Bargain_Rzl

I've nothing to add personally, but your question reminded me that I'd read another thread on the subject - and yes, there are other regular MSE posters living with the condition:

http://forums.moneysavingexpert.com/showthread.html?t=871691

Horace

Message for Soolin - can this be merged with the other Uveitis chat on this board?

Hi Paparika

I have had anterior uveitis since 1998, unfortunately the cause is unknown but I have a feeling that it is connected to an allergy to antibiotics because I was seriously ill during 1998 and was put on antibiotics for 6 months:eek:

As a result of the uveitis I developed secondary glaucoma in my left eye in 2002 and in my right eye in 2003. I have now had 4 ops in my left eye and 2 in my right during that time:rolleyes: Touch wood, I haven't had a flare up of uveitis now for 12 months but if I do, I know that I shall self-medicate until I next see my consultant.

I take steroid drops every day - currently on one drop of Pred Forte to each eye per day. I went to see my uveitis consultant last week and he was pleased that I didn't have one grain of uveitis in my eye:j

Thankfully I have never had posterior uveitis which can damage the macula. Uveitis has caused my pupil to stick to the lens in my eye - so my left eye the pupil has no reaction to light whatsoever and looks like a pinprick but in my right eye the pupil is only slightly stuck to the lens which has given my pupil a clover-leaf effect.

Another side effect of the uveitis, glaucoma and the various amounts of medication that I have been on, plus the poor eye sight in my left eye in particular is that I now have a cataract. I decided last week that I didnt want it operated on because I wouldn't get any vision back (my optic nerve is too damaged) but I was told that it might have to be done for medical reasons because they would need to see the back of my eye:rolleyes: I just wish they'd leave my eyes alone because I am fed up of surgery - I have had 3 ops this year already - 1 on left eye and 2 on right.

I see Prof Murray at the Birmingham & Midland Eye Centre who is one of the best guys in the country when it comes to uveitis:D I had to go to Moorfields once when I was in London because I had a severe headache - I needed to get my eyes checked (for me a severe headache might just be a headache or it may well be high high pressure), and when I said that I was a regular patient of Prof Murray this registrar shook my hand and said that it was honour for him to treat one of Prof Murray's patients.

I also see Mr Sung at the same hospital for my glaucoma - he is what I call a slice and dice man because he likes operating on me:eek:

One thing that I have noticed that does affect my uveitis and that is stress, last year I was redeployed into another job (same employer) and my new boss was a bully, he put me under a lot of stress to the point that I had constant uveitis and felt like doing myself in. As a result I had a lot of time off sick and was eventually made redundant in August last year (my ex employer is well known for disability discrimination), no reasonable adjustment was made to my new workstation either which meant that I had to struggle and strain to do my work which impacted on the uveitis. I haven't worked since then - although I am now setting up my own business but since I was made redundant my uveitis has gone although I will be subject to flare ups from time to time.

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.