I've been having problems with my left eye since Feb 05....

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I've been having problems with my left eye since Feb 05. It started as an unsual redness around the iris. I was referred to the Eye Clinic, who then informed me that I had Iritis. At that time I was given the pred forte drops. After several recurring flareups it was found that I actually had Scleritis (they are very similar apart from the pain!!!). For the last year and a half I have been taking oral steriods and immunosupressants but it still keeps coming back!!! I don't know of anyone who has this problem. Is there a support goup??

It can really get you down, the constant monthly (and sometimes weekly) visits to a "not-so-local" hospital are costing a fortune along with prescriptions etc. Please contact me if you have/or know of anyone with this condition because no-one else seems to "get-it" (especially my Boss who I'm sure thinks I am making the whole thing up!!!)

[i:9b7cdd6cb3]This message was automatically imported from the original Patient Experience[/i:9b7cdd6cb3]

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  • Posted

    [b:d20797b321]

    I too have been diagnosed with scleritis after an exhausting round of tests and specialists (3 neurologists, 2 rheumatologists, 4 ophthalmologists)

    My problems started about 6 years ago - my left eye was swollen, red and moist looking. Given steroid eyedrops for much longer than I should by family doctor. Eventually took myself to see an optometrist - immediately sent to ophthalmologist who ordered CT scan and MRI - both normal. Starting to develop awful headaches around the left eye also. Eventually went to dentist, had a root canal, headaches cleared up and red eye went away. So forgot about it.

    4 years later, symptoms returned in left eye. This time headaches much more severe, waking me up at night. Went to MD, who did nothing. Eventually saw neurologist (arranged by myself through contacts) who said it was cluster headaches, gave me verapamil. Headaches worsened, neurologist couldn't see me for another year. After really severe headache went to ER. They thought I had temporal arteritis, had biopsy - normal. Referred to rheumatologist, lots of bloodwork - other than elevated ESR, bloodwork normal. Put on prednisone in ER, but when biopsy normal tapered off. Headaches stopped with prednisone. It was great for a while. Sent to see another neurologist - she also said cluster headaches but wanted me to see an eye doctor because of the red eye. Eye doctor said scleritis not cluster headaches. Put me on longer course of prednisone. Meanwhile red eye and headaches stopped in left eye, but came back in right eye. Prednisone cured all, but only at high doses. Symptoms returned when down to 20 mg. Sent back to another rheumatologist, now taking methotrexate and prednisone. Feel that I am a bit of a drug experiment. Neurologists still insist I have cluster headaches, eye doctors say no, it's scleritis. It is certainly a very frustrating and worrisome experience.

    [/b:d20797b321]

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  • Posted

    I feel for you both, in fact I feel sad for all the people who have described their experiences here, and the pain they have been going through.

    I wish this board was visited more often and more people would share their story, especially since one can feel like they're the only person in the world with a red eye and everyone else is going about their usual business with bright clear healthy eyes. It's really depressing.

    Having read through all the topics, I don't know if I should feel \"lucky\" or not, for only having Episcleritis and not the more serious scleritis, etc.

    Still, I've been suffering for the last 3 years or so, inflammation in one or both eyes, almost every other week, and it keeps coming back.

    I've gone through a box of flurbiprofen tablets (non-steroid) which would reduce the pain but give me upset stomach (after 3 or more tablets).

    I was then given Prednisolone 0.1% steroid eye drops, which were awful, causing a weird yellow/green fluid to come out of the eye, while not reducing inflammation or pain. Stopped using them after few days...

    Another eye clinic then prescribed the Acular eye drops (ketorolac trometamol 0.5%). These do seem to help with the pain a little bit, but the redness still remains for 5 to 6 days.

    And people still ask [i:9bc413c539]\"what's wrong with your eye?\" [/i:9bc413c539]as well as the usual ignorance of [i:9bc413c539]\"Ooh you've got conjunctivitis, I better stay away from you 'cause I might catch it!\"[/i:9bc413c539] That really infuriates me. :evil:

    These days I don't bother with the eye drops, but usually take a couple of Nurofen+ tablets, which does help to kill the pain. But the social problems are really depressing. I thought my job being stressful was a possible cause, but being off work hasn't helped. I don't feel like I can go out like a normal person and socialise, as most people give you funny looks or stupid comments. Knowing that this condition is apparently incurable and will keep coming back really gets me down. One positive aspect is that it shouldn't get worse and cause vision preoblems. Well I hope it won't.

    I would really like to hear from more of you with similar problems, and find out how you cope with them. It would help a lot. If episcleritis is as common as they say, then there must be lots of people out there who will have something say.

    Thanks for reading.

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  • Posted

    I agree with you Zack. It would help to hear other people's stories. Although this has been at times a very frustrating experience, it could be a lot worse. The worst part is feeling that the specialists are unsure what they are treating and also unsure how best to treat it!

    I would like to hear from other people who have scleritis with no other symptoms (i.e. no Rheumatoid arthritis, Irritable bowel disease, etc.)

    Flo

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  • Posted

    [quote:492ed57f89=\"Flo\"] The worst part is feeling that the specialists are unsure what they are treating and also unsure how best to treat it!

    Flo[/quote:492ed57f89]

    Yes, that is very unsettling. I felt like a guinea pig taking the steroid eye drops, the doctor just said \"let's try this and see if it works...\"

    Not to mention several \"specialists\" who didn't know much about eye inflammation, but simply concluded it's an infection...!

    I wonder if anybody is doing any serious research into these conditions!?

    Well anyway, thanks for replying Flo, and best of luck!

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  • Posted

    I too had a red painful left eye one day out of nowhere. I was on vacation with husband and friends and ended up going to Urgent care (I am in the US and these are clinics open at odd hours). They sent me to an opthalmologist on call and he gave me eye drops.

    CAUTION: I am now seeing a great doctor at Stanford University......steroid eye drops increase your risk of glaucoma and cataracts. You should not be taking them for more than a 10 day period.

    I have been responding well to large doses of ibuprofen, but again, after long term use (3 months, my stomach and GI do not feel well). They have prescribed Nexium which helps prolong the negative side effects but I am aware that I am lucky because I haven't been put on oral steroids or immunosuppressants.....yet.

    My case is what they consider mild, but I can't get it out of my mind. Will I develop Rheumatoid arthritis? Lupus? Or worse.....

    It is good to hear your stories because that let's me know that I won't necessarily develop those even though my eye is not well.

    I just found out last night that is has moved to my other eye so it is in both eyes now. The best comment I get from people is, \"you should go see another doctor, you probably just have something in your eye\".

    My only concern is, should I be seeing a rheumatologist? The opthalmologist says not yet and he is good, but you never know.

    It is also good to hear someone say they quit work to relieve stress and it didn't help. I keep re-thinking my job and will I have to put my family in a more difficult financial situation to relieve stress. My doc said no, and it sounds like he is right.

    Thanks for sharing! It helps to know that my frustrations are warranted.

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  • Posted

    This is my story so far :evil: I have Scleritis and have had for aprox 3 yrs know and have lost my job through it and can not get any benefits and am now starting to get depression through it.

    I agree that they dont seem to care as i never see the same person twice and every time i go in aprox 6wks it has to be gone through again i have had all the tests and there is nothing else wrong with me (lucky) but i have pain all the time and i am on some pretty strong stuff but these come with side effects of their own as we all know!!

    i just want someone to sort out the correct treatment as i know this is for life but i would like to have quality of life and at this time i don't have that as im trying to cope with the constant pain and financial ruin caused by this also. what anoys me is they say when they do bother to look at my eyes that its clear well of course its clear im on steroids and cellcept and other stuff but i have tried lowering the dose of the steroids etc and as soon as i do within a week my eye is red again and the paon is unbearable!!!!! they dont belive me and just seem to be trying anything they can think of instead of doing somethihn to sort it out !!!!!

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  • Posted

    Hi everyone I have posted my story on My Eperience but just wanted to join in to show that you are being read, I know it helps. We are a group of very frustrated people who only want someone to realy help us. It never seems as though the doctors have any idea how we feel or have any idea how to calm our eyes down. As I also have Sjogren and Lupus I know how difficult it is when we should have the benefit of departments working together to solve our problems, this seems quite impossible. I feel for you younger people trying to make a living and am so thankful that my eyes didn't get so bad till I reached old age. I can't think of any way to help except to say that I find heat is the only thing that helps. I bathe my eyes every morning with baby shampoo in slightly cooled boiled water, I sit with the shower onto my eyes until my face is numb and I heat wheat bags in the micowave and sit with them on my eyes. Maybe someone else will tell us if they have any coping strategies. Good luck to you all kelsey
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  • Posted

    I've had Scleritis for over 3 years and I think I've probably had every treatment possible. Firstly I was given Pred Forte drops which worked for a couple of months, when it came back I was given Steriods on quite how doses with the intent to reduce the dose quite quickly. But the Steroids again weren't enough. After about 4 months of the steriods I was given an immunosuppressant (tacrolimus) to take as well. For about a year this combination worked, although the scleritis still kept coming back it was manageable by altering the dosages. In January last year, after having 3 servere outbreaks, another immunosuppressant was added to my treatment (azathioprine). After again finding that the 3 treatments together were not enough, another treatment called Humira was added this was a TNF blocker in injection form. However due to a very low immune system and high glucose (caused by the steriods and immunosuppressants) I ended up in Hospital. I had a grion abcess that my body couldn't fight and when it turned into Necrotizing Fasciitis I was very ill indeed! As soon as I went into hospital all treatments for the Scleritis was stopped apart from a small dose of steriods. I had 2 surgeries, 4 weeks in hospital and 4 months off work. It was 3 months before I had another bought of Scleritis. I discussed treatments in great length with my optomitrist and we decided to just use the Humira injection and forgo any other treatments......I was Scleritis free for 6 months after that!! It's not all good news tho, we recently tried to stop the treatment which has resulted in quite severe episodes of scleritis, but I have told my optomistrist that there is absolutely no way I will ever entertain steriods or immunosuppressants again....the risks are just too high. It is a shame that I had to go through all of that to find out that the last treatment was the best one!! I finally glad to find a post about Scleritis, I've never spoken to anyone else in the same boat as me. Doesn't matter how much to try and explain how it feels, no one really understands how painful it can get.
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  • Posted

    Hi, Just want to add my story.. I've been a long term sufferer of chronic iritis in both eyes, right though taking most of the brunt. I'm a steroid responder so have been using Vexol (Rimexilone) throughout for treatment. Then August 2008 suffered the worst pain imaginable. Starting in right eye. Along came severe eyebrow aches, eye twitching, horendous pain, worse pain with photosensitivity and inability to even look at a tv or a computer. Spent 2 months bored, depressed and in severe pain. I visited my usual eye hospital (which isn't a stones throw away from where I live) around 20 times from August to end of October.

    Had more blood tests done (which had already been done when I was first diagnosed with iritis 7 yrs ago). One came back an imbalance in thyroid, got that checked out with GP and now being treated for hypothyroidism.

    During this time the scleritis was diagnosed only after the 10th or so visit. It then travelled into the left eye but was for a better term, less severe in pain that right, but still ruddy severe.

    I was given Optimmune eye ointment to take along with Arcoxia tablet (usually given for arthritis patients) which is NSAID (non steroid anti inflammatory drug). Things started to calm down by the end of October but it's still there.

    My eye lids and overall eye area has become very puffy and inflamed along with black circles under my lower lids.

    I am due a specialist visit on 14th November. I have been told that injections of steroid may help and also talk of a CT Scan and other scans, oral steroids, but none actually been carried out as yet. Ive been off work since August, then been made redundant to add insult to injury.

    Doc in casualty told me that after the diagnosis of thyroid imbalance things should start to settle - but I have my doubts. Have a feeling that this is going to linger for a long time.

    I must admit after reading some of the posts here, the heat treatment does help. I either put hot compresses of cottonwool, hot towels on my eyes. Also find that putting my face over a bowl of boiling water with a towel over everything for about 10 minutes also helps.

    I have spent a fortune on prescriptions over the years but more recently with this diagnosis of scleritis. Before the scleritis was diagnosed I was given different steroid drops (without preserves - no luck), various types of dry eye treatment, around 30 boxes of different strengths of eye drops and tubes of lubricants too.

    I guess the only light at the end of this is that i now dont have to pay for prescriptions now I have thyroid problem - but boy that doesn't go anywhere near how elated I'd feel if I could just go back to life with normal eyes.

    I am looking for anyone else's tips on how to cope with this. I cannot plan anything at the moment, not even a short break for me and my other half, as he has had the worst time too with this, seeing me in such a state and in pain. I have until this week (3rd Nov) had to sleep upright during the night, not that I have had much sleep since this whole episode started. I have not worn eye make up either, and have been out for 1 night out, yes, I had my 40th birthday to boot!

    And they say life begins at 40!!!

    I'm still a youngster and a person who has a lot of work experience who doesn't want to sit idle, wants to use those skills and get back to work and a normal life.... Anyone, please help.

    Look forward to hearing from you

    Maria

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  • Posted

    It has been so helpful to read all of these postings. I am from the U.S., have had episcleritis for the past 15 years and then it changed to scleritis in the past year. At first the episcleritis would appear sporadically, once or twice a year. Then it was every few months, then every few weeks. I have been on steroid eye drops for years but I think they just stopped working.

    About a year ago, the episcleritis changed and became scleritis. As you all know, the pain was unbearable and I didn't know what it was. It was affecting my job, my life because I just didn't know how to deal with the pain. My General Practioner even gave me percocets but that didn't help. When it changed to scleritis, my eye doctor put me on 60 mgs of oral prednisone and that definitely helped. Unfortunately every time that I tried to \"wean\" off the prednisone, I couldn't get past 20mgs before the flare ups came back. And the scleritis certainly didn't discriminate, it would go in my right eye, then left. Thank God I never had it in both eyes at the same time.

    I saw rheumatologists, endocrinologists and different eye specialists. Fortunately (unfortunately) there was no underlying cause for the scleritis so they didn't know how to treat me.

    I kept pushing my eye doctor for help but he just kept telling me to give the steroids a chance. After being on the steroids for a year, on my own, I finally found a uveitis specialist that has been treating me. He put me on one drug but it wasn't enough to control the flare ups while I tried to wean off the steroids. Currently I am on a drug called methotrexate that has been helping to control my flareup. I am on 25 mgs of the methotrexate. It appears that this drug has been used to treat lymphoma (?) but the uveitis doctor said that they have found that it also helps people with scleritis. And sure enough, I can honestly say that I have not had any major flare ups in the last few months. I am currently down to 1 mg of prednisone and hope to be off in a few weeks. I hope the methotrexate can control the scleritis but if not, hopefully my doctor will know how to adjust the dosage. I may need to be on this for 2 - 3 years to help stabilize things but I don't care. It appears that not many opthalomologists know about methothrexate and because of their unfamiliarity, are unwilling to prescribe it.

    I feel for all of you that have this condition. I totally understand because I have been there. Try not to give up hope. Continue pushing to go to the different doctors. Try to find a uveitis specialist. Good luck and thank you for listening. I would love to hear from you

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  • Posted

    My experience - I've had scleritis for at least 5 years now, and I'm not yet 30! Incredibly painful - as you'll know. It affects both eyes, and I have head-exploding headaches to accompany the inflammation which occasionally give me dizzy spells or mini-blackout/spacey moments ,along with the usual eye/face pain, photosensitivity etc etc and sometimes the scleritis makes me feel I'm in a little bubble, separated from others,a kind of physical detachment - unable to engage with things around me. The scleritis is absolutely exhausting, and most people who don't have it just cannot understand why - the sleepless nights, the waking up in the night,and the tiredness of constant pain in the eye.

    I worry about my career prospects (I'd still like to do something I [b:7abd9259b2]want[/b:7abd9259b2] to do, rather than an inferior have to/can do career) since scleritis spills over into everything, whenever I have a flare-up, which is often. Reading paper documents, using computers, TV, even listening to music (the vibrations)- all hurt my eyes. Not sure I could physically manage full-time work again. I very very very rarely wear eye make-up, though I used to enjoy it (before my scleritis kicked in). And of course, the redness is just unsightly.

    Had some blood tests, which showed up nothing. Same old story of 'not sure of the underlying cause etc etc', which is of no use. My doctors are sympathetic, but don't quite understand... I use Flurbiprofen and steroid drops- though I'm less than happy with the potential long-term consequences of frequent use.

    I find cold compresses help for instant relief, though I'll try the hot compresses others have mentioned. Regular exercise too - v useful I find. I'm also careful about getting enough sleep, as I find that lack of sleep makes worse the pain, and I generally try to manage other aspects of my lifestyle - amount of time spent using VDU/TV etc. Ibuprofen - love it!

    On the plus side, I've not had it as long as other people on here! But I wish that someone could just wave a magic wand and cure me - I remember golden days pre-scleritis!

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  • Posted

    [quote:0639b10ee1=\"nvfancy \"]It has been so helpful to read all of these postings. I am from the U.S., have had episcleritis for the past 15 years and then it changed to scleritis in the past year. At first the episcleritis would appear sporadically, once or twice a year. Then it was every few months, then every few weeks. I have been on steroid eye drops for years but I think they just stopped working.

    About a year ago, the episcleritis changed and became scleritis. As you all know, the pain was unbearable and I didn't know what it was. It was affecting my job, my life because I just didn't know how to deal with the pain. My General Practioner even gave me percocets but that didn't help. When it changed to scleritis, my eye doctor put me on 60 mgs of oral prednisone and that definitely helped. Unfortunately every time that I tried to \"wean\" off the prednisone, I couldn't get past 20mgs before the flare ups came back. And the scleritis certainly didn't discriminate, it would go in my right eye, then left. Thank God I never had it in both eyes at the same time.

    I saw rheumatologists, endocrinologists and different eye specialists. Fortunately (unfortunately) there was no underlying cause for the scleritis so they didn't know how to treat me.

    I kept pushing my eye doctor for help but he just kept telling me to give the steroids a chance. After being on the steroids for a year, on my own, I finally found a uveitis specialist that has been treating me. He put me on one drug but it wasn't enough to control the flare ups while I tried to wean off the steroids. Currently I am on a drug called methotrexate that has been helping to control my flareup. I am on 25 mgs of the methotrexate. It appears that this drug has been used to treat lymphoma (?) but the uveitis doctor said that they have found that it also helps people with scleritis. And sure enough, I can honestly say that I have not had any major flare ups in the last few months. I am currently down to 1 mg of prednisone and hope to be off in a few weeks. I hope the methotrexate can control the scleritis but if not, hopefully my doctor will know how to adjust the dosage. I may need to be on this for 2 - 3 years to help stabilize things but I don't care. It appears that not many opthalomologists know about methothrexate and because of their unfamiliarity, are unwilling to prescribe it.

    I feel for all of you that have this condition. I totally understand because I have been there. Try not to give up hope. Continue pushing to go to the different doctors. Try to find a uveitis specialist. Good luck and thank you for listening. I would love to hear from you[/quote:0639b10ee1]

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  • Posted

    I have had a very similar experience to many who have commented in this discussion. I am so curious if those of you who posted about your battle with Scleritis years ago are still struggling with it and what your current condition is.

    I was diagnosed with bilateral scleritis (both eyes) in 2011 and I suffered with redness and pain in the eyes, headaches, some tearing, ocular pain (numbness etc. around the eyebrow, cheek bone). After being mis diagnosed for weeks I was finally diagnosed but put on high doses of prednisone. (60 mg) which offered relief right away. But after coming down, the Scleritis flared up. I was put on Methotrexate as an anti-steriodal agent and now I take 20 mg. of Methotrexate and am working my way off of Prednisone. But even after coming down to 5 mg. of Prednisone, I began to have flare ups again. I am so frustrated. Like many of you, I feel like a guinea pig and that the doctors are just 'guessing'. No one seems to know what is causing it and after MRI's and tons of blood tests, there are no answers. If anyone on here discovered a solution or was able to get off of medication successfully, please post your story. Thank you.

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  • Posted

    Hello everybody, I'm probably one of those "longest in treatment" cases. I have been suffering from scleritis

    ( currently having a flare up ) since I was 15, I'm 26 now. Prednisone, methotrexate, eye injections, pain relievers and eye drops didn't help me. I just started last week with Humira ( adalimumab ) prescribed by rheumatologist and I will post again after a couple of months using it to let you know if its working or not. Since the methotrexate started working then it didn't( 25mg weekly ). For reference They have done all kinds of tests to check for the cause even in different countries. And I go to Balcom Palmer Eye institute in Miami Florida ( the best in The USA ) and thanks God I have an eye specialist that has stood by me for the past 5 years ( Dr. Albini )

    I will keep you updated and be strong, ad keep your faith. I'm sure that this will go away soon!!!

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  • Posted

    Hi all,

    Im so glad i have finally found somewhere to tlk about my troubles =(

    Im only 22 and ive been diagnosed with severe Scleritis ive been suffering for 7 weeks now and its unbearable.

    I started off seeing 4 drs in one day, after 8 visits to the same eye clinic i was put on 70mg oral pred, it has has no effect on me at all except for putting on a stone.

    I finally seen a specialist and was told i needed to have 1g of IVMP and start taking Cellcept. The IVMP worked wonders for 3 days but once the course had finished i was bk im trouble pain. Cellcept made me increasingly worse and made me feel like i had the flu.

    I was then told my case is too complicated for our local hospital and i was sent to Bristol Eye Hospital. I stayed in for 3 days for 3 more days of IVMP. I seen lots of different dr's and a professor they have told me i may neeed to have a biopsy of my eye but noone in the hosp feeels comfortable doing it because its never been done there. I am also waiting for funding to start a drug called Humira which im a bit scared about does anyone have any experience of this medication? Please help me i need guidance. Jem

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