Been told to try Prednisolone - not happy

[Tetley]

I've had eye problems for a long time now, in the last year I've been back and forth from the eye hospital (NHS) and no improvement so far.

My eyes are awfully uncomfortable when I wake in the morning, I cannot read anything, watch tv, even exercise as this will trigger them to be worse for the rest of the day(s).

I used to work in a kitchen up until July until it got to the point where I couldn't handle it anymore and my Doctor signed me off for a month, then 2 months and after no improvement I quit my job and am currently claiming benefit (something I never thought I would be doing, and to be honest it depresses me so much as people just don't understand, "he has sore eyes, why can't he work?").

Anyway, the last time I went to the eye hospital I found I was to see someone else (the guy before was brilliant and understanding), but the new Doctor was an older chap, who was rather rough when examining my eyes, didn't seem to understand what it was like, was VERY surprised when I told him I wasn't working because of it (made me feel like a fraud) and then told me to take some Prednisolone for 6 weeks while my eyes weren't that bad.

1. My eyes may not be as severe as a lot of the other people there but they ARE bad to me, my life is hard and with people like this very depressing.

2. I'm not entirely happy with taking steroids, I've heard of a lot of the side-effects and I value my eyes, they're already in a bad way.

3. I'm worried if I don't take this they may refuse to help me anymore and this may effect my benefits as I'm struggling.

Any thoughts on Prednisolone? 2 weeks 3 drops, 2 weeks 2 drops, 2 weeks 1 drop

Anyone else in the same situation? Am I the only one who has had to leave their job? I feel such a fake sometimes as people can't see how I feel.

On a plus note, the only thing that seems to help is Opatanel (Only found out recently that I can use it twice a day), which offers some very short-term relief, calms slight redness, but when aggrivated badly they have no effect.

I think I'm done, not sure where I'm going with this, just lost a bit.

Edit: I have been trying to write down all my symptoms lately to get a better diagnosis from some one as i have been diagnosed with a few things so far (blepharitis from doc, MGD from specialist, allergies etc) but nobody seems to be sure what i have and lost to find something to help. i would love to hear if it rings a bell to anyone:

* Daily Irritable, dull burning, soapy stingy feeling in eyes from the moment i wake up.
* Eyes at worst in the morning - not able to use them.
* Reading (even the newspaper), focusing on tv/pc makes my eyes severely uncomfortable.
* Sensitive to sunlight and wind - gives me headaches around the eyes and forehead and agrivates eyes.
* Eye sensitive to most eye drops and being touched - find it very difficult to see the doctors/specialists for any tests
* Fiance notices eyes twitching after i read or watch tv
* Occasional Foreign body sensation, itchyness, grittiness feeling
* Occasional redness on eyelids
* Left eye seems more angrier than right, have had one off blister on eye lid rim
* When eyes are severely bad i have to go to bed in the afternoon with the curtains drawn
* Affecting my whole life - focusing on anything seems to make my eyes irritated and inflamed. unable to find a job my eyes can cope with.
* Random other points: nan suffered from ocular rosacea and rosacea and mum suffers from rosacea. allergic to alot of things, possible candida/yeast problem, suffer from anxiety.

Thanks,

Simon

[stella]

Hi Simon
Soooo sorry to read your story - I think if i were you i would take the prednisolone drops as your ophthalmologist prescribed ,since you sound as though you have a really bad flare -up
I would find myself a good optician/optometrist and get him/her to test your eyes for increased pressure after being on the drops for a week, and from then on ask if they would test them regularly until you come off the drops - or even better (cheaper) ask the hospital to moniter you while on the steroids
My understanding is that they are OK short term ,but you need your intra occular pressure monitered
If and when things improve then you are going to have to look at more long term solutions - steroids are short term only
But right now you sound like you need the quick fix that steroids give you
Dr Latkany in his book the dry eye solution uses steroids at first along with restasis to encourage his patients to tolerate the burning restasis causes until the effects of restasis kicks in

Also keep the eyelid hygiene going and maybe ice packs (be sure to cover in a cloth ) may calm your eyes
There is a slightly weaker steroid eye drop that i was prescribed at first when i was so miserable called FLM - and i was prescribed this much the same way as you were
Anyway - good luck and let us know how you get on
All my sympathies
Stella
PS have you tried sun glasses to read, watch TV ,and do computer?
Wrap around would be best to keep the wind off your eyes and form moisture chambers - I used to find flurescent light in supermarkets really painful and dark glasses helped and i still use them for the computer and sometimes for TV

[locky]

Dear Simon

Dont use prednosolone you seem to be in the same boat as me in all aspects dont ever feel bad for sickness benefit you will sometimes meet doctors like that ( judgemental ) he /she does not know what it is like to walk in your shoes a sickness is a personal thing to each one of us and in return we all have different ways of coping if you would like to discuss your situation email me and i will send my number to you shaunlockwood@btinternet.com i do live in the u.k....

locky

[irish eyes]

Hi Simon

I have to use Prednisolone when iritis flares up in my right eye from time to time. Steroids are the only option for this condition.

I have had dry eye and blepharitis for nearly as many years as I have had the iritis flare ups - so the steroids have had a chance to work on these conditions also - but they haven't made any difference at all.

It sounds to me as though this doctor might just be giving them a go to see what happens - perhaps it is worth trying? I can understand your concern about their side effects - and you do need to be supervised if you use them long term.

I'm sorry that you had to leave your job - I can only now work part-time but I feel lucky to have a job that I love and my colleagues are very supportive. (Believe me - it has not always been thus). And yes, it does make life very hard work and I still get sarcastic remarks from people if I wear my dark glasses and there is no sun. I can usually come up with something quite incisive back so they don't bother me as much as they used to.

The NHS have been brilliant as far as my iritis is concerned but absolutely useless with the dry eye & blepharitis. It was trivialised and regarded as `a bit of a nuisance' but hardly something that I should get upset about!!

This has to be an individual thing - what would work for one might not work for another. It would help if you could find a sympathetic opthalmologist but there are plenty of practical tips you can pick up from this site. Are you taking plenty of fluids and eating a healthy diet? There are many lifestyle factors that could be considered - and believe me, I can empathise with you. Please try to stay positive; the spiral of depression can be difficult to escape from. You take care now.

[locky]

steriods

steriods should be used as a last result preserverved drops (CAUTION ) preservative free also with caution i feel there is some many people trying everything but dont relise how much damage you are doing to the ocular surface DO NOT BECOME A VICTIM OF POLYPHARMACY.....
REMEBER IT IS BEYOND ARE ABILIY TO MAKE A ACCURATE DIAGNOSIS AND TO TREAT SUCCESSFULLY , WE REQUIRE NEW WAYS OS ASSESSING THE OCULAR SURFACE,,,, THESE ARE THE WORDS OF PROBLY THE MOST RENOUD OCULAR SURFACE DISEASE SURGEON IN THE U.K MR JOHN DART...
paradoxically how do you treat a condition when you are unable to make a accurate diagnosis......
I AM SORRY THESE ARE WORDS THAT SEEM UNKIND BUT IVE BEEN THROGH AND STILL AM 12 YEARS LATER AND NOTHING HAS CHANGED FOR ME... I AM SLOWLY ACCEPTING MY DISEASE FOR WHAT IT IS AND YES IT IS THE HARDEST THING I AM LIKELY TO FACE IN MY LIFE IT HAS DICTATED MY LIFE AND NOW GOING THROGH MENTAL HEALTH CLINICS FOR SEVERE DEPRESSION... WE ALL NEED TO FACE OUR CONDITIONS AND AM SORRY TO THOSE I HAVE CAUSED OFENCE BUT I FEEL I HAVE EARNED MY OPION AND HOPE I AM SUPPORTED IN MY REMARKS.....

LIFE NOT PUT TO THE TEST IS NOT WORTH LIVING.....

GOD BLESS YOU ALL

LOCKY
I have to use Prednisolone when iritis flares up in my right eye from time to time. Steroids are the only option for this condition.

I have had dry eye and blepharitis for nearly as many years as I have had the iritis flare ups - so the steroids have had a chance to work on these conditions also - but they haven't made any difference at all.

It sounds to me as though this doctor might just be giving them a go to see what happens - perhaps it is worth trying? I can understand your concern about their side effects - and you do need to be supervised if you use them long term.

I'm sorry that you had to leave your job - I can only now work part-time but I feel lucky to have a job that I love and my colleagues are very supportive. (Believe me - it has not always been thus). And yes, it does make life very hard work and I still get sarcastic remarks from people if I wear my dark glasses and there is no sun. I can usually come up with something quite incisive back so they don't bother me as much as they used to.

The NHS have been brilliant as far as my iritis is concerned but absolutely useless with the dry eye & blepharitis. It was trivialised and regarded as `a bit of a nuisance' but hardly something that I should get upset about!!

This has to be an individual thing - what would work for one might not work for another. It would help if you could find a sympathetic opthalmologist but there are plenty of practical tips you can pick up from this site. Are you taking plenty of fluids and eating a healthy diet? There are many lifestyle factors that could be considered - and believe me, I can empathise with you. Please try to stay positive; the spiral of depression can be difficult to escape from. You take care now.[/QUOTE]

[irish eyes]

Locky

Of course everone is entitled to their opinion. Had it not been for steroids, I would have lost the sight in my right eye because of iritis. I have just had a mild bout of it and had to use Prednisolone again. It's even part of my `emergency medicine' when I go abroad in case I have an attack.

On the other hand, blepharitis and dryness is worst is my left eye - and steroids have never been used in that eye so they cannot be to blame. Steroids have caused a cataract in my right eye but that is the least of my worries.

A mild dose for a short time - supervised by a doctor - might just give Stephen some respite.

[Tetley]

Thank you all for you nice replies.

My gut feeling is not to take it for now and to speak to my general doctor in the next few days as she has been supportive all the way through, trying everything she could until she was exhasted and then refered me to the NHS hospital.

If I'm only taking this for short respite, then it's not worth taking. I live with this everyday, sometimes ok, sometimes not, and to be honest I'd rather just live with it until I find something that will cure it, rather than something that might ease it for a short time and potentially do some long term damage.

To be honest I don't think the eye doctors have a clue what I've got, they reckon that is all just allergy based with also MGD and fully expected the medicines before to clean it up. Surprise, surprise it hasn't and now the new guy just gave me this steroids without really explaining why I needed it.

Steroids are also used for skin conditions and ONE of the side-effects are thinning of the skin, this is partly why I don't want to drop these things in my already uncomfortable eyes.

Anyway, thank you all again, this forum is such a relief.

Shaun I will get in contact with you, if I added you to Messenger would you want to chat on there sometime? My email is down at the moment so cannot send anything.

Regards,

Simon

[locky]

speak soon

I Look Forward To Speakng To You Soon You Could Use The Private Message Box On This Site ?
Take Care Simon And Will Talk Soon

[jlg_uk]

Hi Simon

I identified with a large number of points in your post, and it sounds as though we are in a similar boat in some ways:

- I'm struggling with coping with work (I work in IT which isn't exactly optimal), concerned about employability
- Sensitive to light
- Aching around eyes (and forehead when things are at there worst)
- Occasional Foreign body sensation
- Redness on eyelids
- Left eye is worse
- When things are bad I have to go to bed stupidly early
- Skin problems in family history
- Quality of life destroying - agree there is a perception sore eyes aren't a big deal and that drops sort this out. We are just moaning about something trivial and minor - people don't understand the serious impact this can have for each day of the sufferer.
- Had a number of problems with anxiety myself.
- Been seeing NHS people about this. After months of initially saying my eyes were fine, finally saw someone who at least diagnosed a problem (although I'd gone armed with pictures of my eyes, MGs, optomitrist findings etc) - only to be told do more compresses.
- Saw someone private about it, and now on week 1 of the same steroid and dosage you refer to.


I'm not happy about being on steroids either, and after 5 days of 3 drops per day I'm not noticing any improvement. Don't like the risks, and as you say it's a short term option anyway. However, I figure I'll try it for a while and see if it calms things down.

I have learnt to cope with the condition better than before, and find goggles help esp at work. I'd recommend trying Wiley-X bricks (using the strap to get a reasonable seal). If your problem is DES, then this should help. If you buy from a UK web site, you can send it back in a week and get your money back if they don't work for you. Or maybe try the ultra cheap onion goggles (£15) as a test.

Some of your problems sound like they are refractive based - I assume you've seen a good optometrist and understand how good your sight is, any problems your eyes have working together etc - I have a little esophoria myself. I'd see a non-highstreet chain person for this.

I also go to sleep around 10 these days (used to be nearer 12), and don't use the computer in the evenings (had to give up World of Warcraft ).

I'm afraid it's just a one day at a time ordeal for me at the moment - sounds similar to yourself.

[dryeyepete]

That sounds terrible for you guys - whilst my eyes don't sound nearly as bad as yours, I have many similar (tho milder) symptoms and fears for the future.

Have you tried having the punctual plugs inserted in your eyes? After trying out all the drops given to me by doctors, I suppose this is the next course of action I must take. Have you considered it?

[Tony Barnes]

Hi Simon

I have to use Prednisolone when iritis flares up in my right eye from time to time. Steroids are the only option for this condition.

The NHS have been brilliant as far as my iritis is concerned

I get iritis due to my AS, and 9 times out of 10 I'll just try and sit it out rather than use drops, mainly because my experience of the NHS is less good, well, at least in my opinion.

I have been getting iritis now for about 9 years, so am pretty well versed with the treatment regime. Even so, every time I get a flare up I am supposed to go to the eye hospital so that they can write out the exact self same prescription to me; tell me the same information to taper drops usage down over a few weeks; and come back to see them. So that costs me half a days pay, however many hours car parking my "scheduled" appointment takes, and whatever they are deciding to charge at the pharmacy that day.

That's why on the vast majority of occasions I'll just sit it out, and only go in if it gets terrible, whilst trying to blag extra bottles of pred that I can keep in the fridge for next time...

Not ideal, but it's a frustrating as hell!

[irish eyes]

iritis

Hi Tony

My first episode of iritis was in 1990 and I've had several episodes since. I can only say that the hospital staff were very supportive because some of these episodes were distressing to say the least. I've even had to have injections directly into the eye when the inflammation did not respond to the steroids. Horrid and scary. All this meant that I had to change career and do something less stressful and more flexible.

Thankfully, I don't get iritis as often these days , and when it does strike - I know enough about the condition to treat it without having to go down to the hospital. On my last visit, I got a gentle admonishment that I should show myself there occasionally because they like to see what is happening at the back of the eye - which is where some damage has been done.

Hopefully, you will suffer fewer attacks as you get older.

[Tony Barnes]

Crikey, I've never come close to that sort of issue, worst I had was when my iris was stuck in the shape of a crescent moon as they gave me drops at 20 minute intervals for about 3 hours, and I thought that was bad enough!

I do think I am lucky with the severity I experience - I find it easy to tell when a flare up is coming as I get an artefact that looks like the japanese rising sun flag, so at that point I'll avoid harsh focussing, and it usually progresses to not much more than some redness and light induced pain. I also have a habit of giving my eyeball a good old squeeze which seems to help me a lot - though my eye doc was not too inspired by the idea!!

Hope that your checks keep coming back ok

[kkahthesea]

Hi,
I can relate to your story. I've had to leave my job as a teacher due to my eyes. I have all the same symptoms ar you. I'm afraid to go to the doctors because everything they do or give me seems to hurt me and make my condition worse. I have ocular rosacea and I am very sensitive to almost anything near or on my eyes. I'm also leary of steroids....how did you get on with them? Did they work OK?
I'm really tired of the pain in my eyes and I spend much time suffering in bed. I'm still looking for a solution!
Hope the New Year brings some relief for you.

[Tetley]

Hello all,
I've not long since come off the steroids, while I was on them I didn't think they were doing anything, but as soon as I stopped taking them, within a day I was noticing my eyes were slightly more irritable and red. Any improvement has now long since gone.
I think looking back that they did calm it down slowly over the six weeks, but the way in which it all came back within a few days shows that to me that it wasn't fixing it at all, just a temporary solution.
I'll take all this back to the eye doctor and see what he says.
Sorry to hear about all of you in similar situations, I wouldn't wish this on anyone, and I wish I could help you all.
Simon