scared

514 Views 6 Replies 4 Participants Last post by lin, May 9, 2008

louise67

Discussion Starter · May 6, 2008

hi everyone, i am back at the eye clinic tomorrow to see if my scleritis is on the mend, but i fear it is still the same, on 40mg prednisalone. also i will be getting the results of my blood tests to see if anything shows up for a diagnosis of lupus. i am feeling very aprehensive. has anyone suffered episcleritis and how long does it take to go?
also i was told that on prednisalone my appetite would increase but in fact it has decreased quite a lot since being on it. im confused

it doesnt take much to confuse me :lol:
i alo have been on permanent low dose antibiotics for over 2 years now for constant urine infection and blood present. i am waiting for the urologist to put a camera in and see what is happening but as i am also waiting for neuro results, for possible epilepsy he wont do it, and having read more about lupus now, i am worried there could be kidney damage. i feel such a wreck and such a hypochondriac at the moment, i just want to cry :worried:
please can anyone reassure me??

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Maia

· #2 · May 6, 2008

I can reassure you that it sounds like sooner rather than later you WILL know what all is wrong with you & will hopefully get treatment that will work.

I find it rather odd that you've been on low dose antibiotics for a solid 2 years! Seems like if treatment didn't work they would have cultured and found exactly what it was to find just the right antibiotic. With lupus, usually it is blood and protein or just protein that is found in the urine, so perhaps that will set your mind at ease a little bit.

Episcleritis usually clears within 2-3 weeks - often within one week. It rarely causes permanent damage; it is pretty unusual to be treated with oral prednisone for that too. Usually eye drops, lubricant or steroid eye drops are used. Episcleritis more often than not occurs for no known reason... but a particular type which is more severe is associated with rheumatoid arthritis and lupus.

I hope you can get some answers soon - waiting is often the hardest part to get through in many ways. Take care and please let us know how things turn out.

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louise67

Discussion Starter · #3 · May 6, 2008

hi thanks, i didnt mean episcleritis, though i have had this before, and it was no where near as painfull as this episode, which is actually scleritis. i cannot take ibuprofen because it upsets my crohns disease. and i had already had a weeks steroid eyedrops, but they didnt make any difference.
thanks for the reassurance on the kidney side of things. i have had so many infections which they treat with a coures of antibiotics and inbetween times, to keep the infections away, they treat with permanent low dose of antibiotic. i now there is always blood present but not sure about anything else. thanks for the quick reply. i just want to feel well again.
take care xx

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Lily

· #4 · May 7, 2008

Hi louise,

I'm sorry you are having so many problems without any answers :hugbetter: Some cases of scleritis can be very severe and yours must be if they have you on such a high dose of oral steroids.

I just wanted to let you know that with that dose of steroids that any blood tests they run to check for lupus may well come back negative, especially the ANA which is their first screening test and most probably your Sed Rate another common one to check. Who has ordered the blood tests for you?

Which antibiotic do they have you on for your bladder problems?

love
Lily

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louise67

Discussion Starter · #5 · May 7, 2008

hi lily, what a lovely name, i am on trimethoprim for my urine infections. i have just got back from the eye clinic after waiting for a hour. i have had such a bad day.
well here goes my next tale of woe, it may take a while as i have another banging headache.
when the postman came, as usual i was shaking with anticipation, for results of my eeg which was done before easter, but nothing!! instaed a letter from incapacity benefit to say that as from now i will have no income, because in 2005, when i was on the tube feed and too ill to do anything about benefits or work, i missed a few national insurance credits. i am not allowed to catch up, and so am entitled to nothing. the doctor has signed me as unfit to even look for another job, in the foreseeable future.
so off to the hospital again, sat for a hour before i got seen, again!! they have lost my notes, ?????
anyway, eventually got seen and the eye is not responding to treatment of steroids so he has referred me to someone else at the eye clinic that deals with inflammation,and uveitis? i just seem to be passed from pillar to post, and a getting absolutley nowhere. i am so tired of it all, and just want to lie down and give in. and still having the headaches and pain that comes with it,
I NEED A MIRACLE !!!!! :sad:

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Maia

· #6 · May 7, 2008

Well, that explains a few things! Scleritis is more serious and usually treated with steroid eye drops and oral steriods, sometimes an antibiotic and in severe refractory cases even chemotherapy. It can last for a long time and needs to be aggressively treated as it can cause vision loss if left untreated especially.

That benefits situation must be infuriating. I know a few people with Crohn's and undoubtedly that can really throw you for a loop and leave you truly incapable of doing anything when it's bad.

I hope they get it figured out for you soon - and you don't have to wait long for that next eye appointment. (((hugs))) Keep pressing on - you're worth it. Just don't ever forget that!

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lin

· #7 · May 9, 2008

Hi Loiuse, cant you try for DLA, as you said you cant work you have things going on, worth a try.

good luck Lin xx

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