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Episcleritis and Scleritis (Page 1)

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Hi Everyone. I am a 31 year old female and have had episcleritis for going on 10 years. My eyes turn red and painful 1 to 2 times a month and it lasts for 2-3 days. Recently, I had an episode that was so aweful and terrible that I couldn't close my eyes or lay on that side of my face when sleeping or the pain would wake me up. When I saw my opthamologist, he said that it had progressed to scleritis.
My major problem is this, I have been to many, many doctors and eye doctors and the medical people say it's an eye problem and the eye people say its a medical problem. I have been tested for lots of stuff but nothing has shown up. Is this normal? I don't know if I can handle pain like that a couple of times a month for another 10 years. I am looking for suggestions. Thank you.
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First Helper mikejslc
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replied September 18th, 2008
episcleritis
I too have had episcleritis for about two years now with 2 flare ups a month. I too have been to many doctors telling me that it's and eye problem and the eye people saying it's a medical problem. It scares me to think that it could turn into something worse. I'm researching. I have found a link on using monocycline and a blood pressure medicine to help with symptoms. I will be talking to my doctor in a couple of weeks when I see him next. If he approves this method I'll let you know.
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replied January 20th, 2009
how did you both go?
Hello, Rebecca and fed Up.

I'm a 36 year old Australian woman who has had scleritis for about 7 years (well that's what I was told - the benign form???, that is not linked to any specific underlying disease etc).

I lucked out and have been treated here in sydney at a Pulic Hospital by an excellent specialist in this field. My understanding is that the treatment for both conditions (scleritis and episcleritis is essentially the same).

My specialist told me that in 50% - 60% of cases, there is an underlying medical condition (hence the endless rounds of scary tests they make us do).

I too have had the life almost scared out of me by the tests, diagnosis, confusing prognosis and general lack of information about what will/might/could/could not happen.

For me, to manage the pain, headache and redness - an alternative therapist (certified etc.) gives a me a homeopathic medication called Traumeels and does an acupuncture session. This usually works better for me than the anti inflammatory medications the doctors have given me.

But today, is the first time I have ever read online that scleritis can be associated with a menstrual disorder? There might be something in this in my case, as I have had some probelms with irregular periods

Anyway, I would be really interested to hear how things have been going for you both - have you found any help for the terrible pain and symptoms? It is amazingly comforting to know there is someone else oout there who is facing the same thing.

Suzie Smile
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replied January 19th, 2012
I have been battling severe scleritis episodes for almost 4 years. In both eyes. I have been to every eye specialist in my state. Steroid drops and injections have been their form of treatment. I have been tested for everything and all tests come back normal. So my dr decides its stress causing it....LOL! I am in the beginning stages of menopause and I have asked him if it could have anything to do with it and he answered very quickly NO. I am sorry that you are having to deal with this disease because I know how very very painful it is. But I also find comfort in knowing I am not alone in this. I eat tons of ibuprofen (now I have ulcers) to ease my pain. I too hope that someone out there has an answer to help us. I cant imagine going much longer living like this. I am in misery alot of my days.Please send any info on this matter if you have any. Thank you so much. Barbie
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replied January 21st, 2012
Long story short, my eye doc referred me to an Eye Inflamatory Specialist who diagnosed me with Scleritis. Someday I will be oral steroid free but for now, he & Rheumatologist prescribed Methotrexate (chemo drug used to treat many conditions). It is a rugged drug, but so is oral steroids. Doc's say it is the lesser of the evils. I have noticed week before my period pain is worse. Unfortunately over last year my periods are twice a month. Good luck to you.
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replied February 15th, 2012
EPISCLERITIS 52YR FEM ASSOC W/HEADACHES.
I am in my menopausal years too and still am dealing with the same. I believe stress is involved because it started when my daughter's wedding plans started and I also lost my job. It never went away completely but it subsided a tiny bit when I stopped wearing my contact lenses. It's only in one eye, but now it flares up with headaches. I don't know if they are migraines or cluster headaches but I believe there is a correlation. Wikipedia had some interesting stuff under cluster headaches. I'm frustrated like the rest of you.
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replied January 6th, 2013
Sceritis
Hi Suzie, I am a 43yo Socttish woman and have been living with scleritis for 20 yrs with no underlying health condition. I am reaaly interested to hear about a link between this condition and menstrual disorders. I have been trying to explain that I feel that this is connected to both my GP and eye specialist but they are not willing to listen. I would be interested in hearing whether you got anywhere with this. Ater hammering my point for over 5 years I eventually have an appt with a gynacologist next week but I am pretty sure I am going to be met with the same lack of enthusiasm as I have had to deal with so far. I feel extremely frustrated at not only having to deal with the symptoms and pain of the disease but the complete apathy from the medical profession who know very little about the disease and seem completely unwilling to listen.
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replied January 20th, 2009
just was told i have episcleritis
I just found out less than a week ago that I have episcleritis. It doesn't really hurt much for me right now, but is annoying. I went to the eye doctor, who told me what it was. He gave me a prescription, but I didn't get it 'cause I had already paid $54 for the exam, and they wanted $76 for the script. So, I got on the internet and started reading, and found this comment about "disorders of menstruation". I just so happened to have started my cycle about 2-3 days before this thing showed up in my eye. It was also the worst and weirdest cycle I have ever had. However, I cannot find anymore information relating the two. Anyone know of a good place for information?
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replied June 1st, 2011
episclera
hey ,
irregular periods could be due to stress too! even i had episcleritis which developed into scleritis eye drops.. n i hv been to more than a dozen doctors, but i was given eye drops called prednisalone. cortizone which helped. but later developed into tosis( drooping) muscle degeneration of the eye, which developed to occular mysthania gravis! ne 1 one heard this one b4?
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replied February 15th, 2012
I read something about this under cluster headaches that I associate with my epischleritis.
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replied February 15th, 2009
Could Endometriosis be the Cause?
I have had sceleritis, iritis and episcleritis. I have also suffered from chronic myofascial pain and a variety of arthritis-type symptoms. I was told the episcleritis could be a result of inflammatory bowel disease, but a colonoscopy did not result in a diagnosis.

Many of the women in my family have endometriosis, and have travelled to Dr. Redwine's clinic in Oregon. I am beginning to think all of these mysterious, unexplained health problems could be endo.
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replied February 15th, 2012
I also have IBS and diagnosed with endometriosis in my younger years. But I think this is associated with stress. IBS is.
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replied June 23rd, 2009
ANTERIOR NODULAR SCLERITIS PAIN!!!
Hey Can anyone help i have had scleritis for 5 years now, im 23 female. It has only ever effected my right eye now i have it in the left i have seen so many dr's prof's but yet the treatment i have received has never got rid of the scleritis. The only thing that has ever worked was orbital injections to my eye and through the cheek, but after have sooo many it swell's and stores the fat in the lower lid, So not only have red eye's all the time it's huge too. My eye's are up more than they are down in a result makes it almost impossible to go to work. I find i can not cancentrate on anything and Mr Nurofen is my best friend!!!! Advice PLEASE
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replied July 2nd, 2009
Hi all, this may sound crazy but I have related my eye flare ups to eating garlic. I love the stuff and add loads to things like curry and bolognese. Whether its when I prepare it or eat it I dont know but since I stopped eating or preparing it my eye has gone from flaming red and very painful with a raised area to mild pink and feeling normal. And continues to improve slowly by the day. Please try it, I know how bad it feels and I hope it works for you. Let me know if it does.
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replied February 15th, 2012
That's an interesting theory. I haven't had that experience with garlic myself. I wonder if there is some kind of inflammatory properties to garlic?
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replied July 7th, 2009
Menstruation and Scleritis
I too have read about the link between menses and scleritis. Does anyone know more about this? Thanks!
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replied July 28th, 2009
Worried Bobbi
I am 27 years old and recently diagnosised with episcleritis. I was miss diagnoised with "pink eye" multiple times over the past 6 months, but I am very worried about my eye, when I have a flare up it is only in my right eye and get terrible headaches with the flare ups. My eye does not hurt the first couple of days of the flare up but then the pain begins in my eye and continues in my head. The vision in my right eye is also terrible with the flare ups. I am on drops right now and they do help, but what are the chances that this will turn into something more serious?
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replied July 29th, 2009
scleritis
I was diagnosed with nodual scleritis. I went for a series of blood tests & all was ok. Im going thru the beginning of menapuse now & wondering if that might have something to do with it but I cant find anything on that yet. Voltaran eye drops & 800mg of Motrin helped me immensely but the dr has no idea why I got this & if it will return Sad
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replied September 22nd, 2009
Scleritis
I'm 59 and was diagnosed with scleritis 4 months ago after a flu/sinus attack - had sinus op thinking it would help, to no avail. I've also been from Opthalmologist to doctor to ENT specialist and eventually a Physician - am waiting to see a specialist Opthalmologist who specialises in inflammatory eye diseas and praying that she will help me - The previous Opthalmologist put me on 60mg or prednisone andf I'm trying to get off that at the moment - hideous side effects - only managed to cut down 10mg so far and losing a bit of sight. It will take me 3 months to get off this dosage -v scary. Anyone found anything useful in the interim? They can't connect mine to any underlying disease and it's really painful and degenerative when I'm not on cortisone.
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replied September 22nd, 2009
NATURAL Scleritis help?????
My mother has suffered for about 5 years with her eyes. At first, she was diagnosed with conjunctivitis by the eye doc. Then, after the palm of her hand started getting pustules on it and she tested negative for Rheumatoid Arthritis, she was diagnosed with Psoriatic Arthritis. Today, I believe she does NOT have Psoriatic Arthritis, but Palmopustular Psoriasis. After her hand started to flare, she was then diagnosed with Episceritis...because of the obvious link between the autoimmune disease and her eyes. Not long after this, she started having severe, boring pain in her eyes when they would flare. She nearly poisoned herself with advil at this point, but the docs didn't determine that. They almost let her die from taking too much Advil before I found the symptoms to ibuprofen poisoning online. The docs thought her "new" symptoms of severe back pain, sweating and nausea was to do with her other symptoms. SO, we got her off of the advil, and she had to have something for the pain, so she started taking pain killers. She went from eye docs to family docs to rheumatoid docs to autoimmune specialists...and they ALL said the same thing...PREDNISONE, METHOTREXATE, REMMICADE, etc. She can't take prednisone, except for the eye drop kind...but her eye doc doesn't like her using those long-term. She took the methotrexate for over a year, to no avail. She still continued to have the monthly flares and extreme, debilitating pain. I was almost as frustrated as she was with it all......UNTIL......
I discovered DMSO gel! By eavesdropping on a conversation about health ailments and cures, I learned that DMSO gel can help with many ailments. But mind you, this is an UNCONVENTIONAL treatment in the USA. The FDA does not approve it to treat any medical ailment except for interstitial cystitis. I bought some DMSO for my mom, and she started using it on her palm for the psoriasis. Amazingly, the stuff cleared the pustules and keeps them at bay. After using the gel for several weeks, it is now starting to remove the thick, dry skin from her palm, and new, pink, healthy skin is underneath. Well, with the healing of her hand, her eye redness and pain has substantially subsided. Now, we have also incorporated these other things, so we aren't sure if it one or the other of them or a combination of them all....but we are going to keep doing them all:

1. She stopped taking Nexium on a daily basis. She has been taking this med for 7 years.
2. She stopped taking garlic and ginkgo biloba (both are blood thinners).
3. She started drinking one Activia drink a day.
4. She started taking HEEL TRAUMEEL and HEEL EYE three times a day.
5. She started taking a high-potency fish oil every day.

Now, I'm not going to say that these things will work for anyone else...but, hey, if you are as tired of the run-around with the docs and the expensive meds that can harm you, it may be worth a try to go the natural route. AND, I am in NO WAY recommending that you use DMSO for any medical purpose. You read up on its benefits and dangers and make that decision for yourself. Anyway, I am sorry that all of you are suffering, but MAYBE this will help someone else out there! If it does, PLEASE let me know, OK??
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Users who thank Clevrblond for this post: preddypp 

replied February 15th, 2012
You're the second person with positive effects with Traumeel. I find that interesting.
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replied September 23rd, 2009
scleritis
I am a 42 year old Australian male and have finished 2 weeks on 150mg twice a day of ranitidne and 75mg of prednisolone daily. According to the eye surgeon and doctor I have seen, mine is arthritis related. I have only slight pain on these drugs but my eyes are still very bloodshot and my eyesight, 5 months ago was 20/20 is getting worse by the day and the joint pain, sensitive teeth and constipation are lovely side-effects. I have been working as a welder but could not continue because of the fumes and dust and pain when trying to focus up close. I have had bouts of carbunkles on the back of my neck for about 10 years, early outbreaks lasted a month or two but my last bout, on my inner elbow, lasted 6 months with antibiotics and mupirocin cream. My local doctor said this dissorder is not cureable and I will carry it with me for the rest of my life, even if I go blind.
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replied October 4th, 2009
Endometriosis/scleritis
I am a 49 year old with scleritis, now i have just found out i have endometriosis. I have read that both conditions can be caused by an auto immune disease, i feel fatigued so often that it is really getting me down. My doctor said it was the stress of life ( i think thats rubbish, i have no stress) My endometriosis causes me chronic hip and pelvic pain. After having a laparoscopy i am told i need a series of injections that will throw me into the menopause to prove it is endometriosis related ( i guess if it is i will be offered a hysterectomy) i am not having treatment for scleritis at the moment although i keep having a deep boring pain in my eyes. Is there anyone that can give me any advice as to what to do? are both conditions related? many thanks in advance
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replied September 1st, 2011
Hello - I see you posted this almost a year ago ... well a few years ago when I went in for laperscopic surgery to remove a troublsome ovary they found that I have a severe case of endometriosis ... things are fused together and they could not even get the entire ovary out in the surgery. A year later I ended up with the scleritis ... no one told me about the possible conection I found that info online ... I also have the hip pain and fatigue ... but i am getting thru that. I tried the shots that someone else spoke of - 6 months of "early" or drug induced menopause ... I was very warm but felt great! After doing nothing about this for a year - my eye is ready to buldge out of my head (I am of course exagerating) and so I am seriously looking into the hysterectomy ... all them reading I have done it seems the only "cure" for the endometriosis ... and to be honest I am not sure if it will help with the scleritis becuase that seems to be a once you have it your stuck with it thing... WONDERING in the last year - if you have any updates???
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replied September 1st, 2011
Endometriosis
Hello - I see you posted this almost a year ago ... well a few years ago when I went in for laperscopic surgery to remove a troublsome ovary they found that I have a severe case of endometriosis ... things are fused together and they could not even get the entire ovary out in the surgery. A year later I ended up with the scleritis ... no one told me about the possible conection I found that info online ... I also have the hip pain and fatigue ... but i am getting thru that. I tried the shots that someone else spoke of - 6 months of "early" or drug induced menopause ... I was very warm but felt great! After doing nothing about this for a year - my eye is ready to buldge out of my head (I am of course exagerating) and so I am seriously looking into the hysterectomy ... all them reading I have done it seems the only "cure" for the endometriosis ... and to be honest I am not sure if it will help with the scleritis becuase that seems to be a once you have it your stuck with it thing... WONDERING in the last year - if you have any updates???
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replied November 19th, 2009
Hi I am a 50 yr old woman and I was diagnosed with scleritis last year. My right eye is red most days but I was prescribed Froben and Maxidex eyedrops which helped and now it has subsided to episceritis. had all the blood tests and all that should up was a weak positive ANA which means there is a slight infection somewhere.
I had really bad shoulder and neck pain at the same time this started and also fluid in the middle ear for which a grommet has been inserted. Whether this was connected is anyones guess.I read that Chlamydia can cause symptoms of scleritis so Iam thinking of doing a test just in case. At the moment I am not taking the prescribed medicine but an alternative of Bee propolis -search for it on the internet - its supposed to regulate the immune system apart from many other things, its worth a try.
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replied January 1st, 2010
Does anyone know what their underlying autoimmune disorder is?
i've had episcleritis for 11 years now. At first the eye
doctor called it viral conjunctivits but now another eye doctor calls it episcleritis. I've been asked if I had rheumatoid arthritis. To my knowledge I don't. I guess I will get a blood work up by my internist and maybe she can speak with my eye doctor to come up with a diagnosis. I want to know what the underlying autoimmune disease that's causing these horrible flare-ups that feel like pins and needles are poking my eye. When I have these flare ups I can't work since I work on 2 computer screens for 7.5 hours a day. All I want to do is lay in bed. I also get a runny nose and stuffy sinus when I have these flare ups. Does anyone who suffers from this have any advice?
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replied January 5th, 2010
Probably not episcleritis if there is pain
nostalchick1, it sounds like you have SCLERITIS instead of EPISCLERITIS. There isn't supposed to be any pain with episcleritis.
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replied January 21st, 2012
Yes I will will confirm with Clervrblond as my Eye Inflamatory Eye Specialist stated to me prior to my exam that I didn't have epi, I have scleritis as there is no pain with epi. He said pain is most common at about 3-4 a.m. which is when I tend to wake up with pain in eye & it radiating down my cheek into my jaw & teeth. Good times, not.......
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replied January 9th, 2010
I have been having flare ups in my right eye for a few years now and finally was diagnosed with EPISCLERITIS.
For the past several months I have been tracking it and it always flares up the week before my period. I am due to start again any day and sure enough the signs of a flare up are appearing. I really think it is related.
I am 42 and this has been going on for about 2 yrs, once a month usually.
I suggest anyone struggling with this, to write down what you ate, what was going on in your life and look back at it after a couple of months. For me I saw a appears to be a clear connection.
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replied January 13th, 2010
I have to say, this has been so helpful and enlightening. Having had episcleritis and then scleritis for more than 15 years years, I never knew anyone else to have this so all of these posts have been so helpful and I truly feel for each of you. I too was on methotrexate with oral steroids but when I weaned off the steroids, the scleritis came back full force. I am now on cellcept (an immunosuppresant) and I was able to wean off the steroids and managed for a few months but lately I have had more infiltrates in my eyes so I had to increase the cellcept. I have had many tests and there is no underlying cause, as of yet. I do have reynauds and thyroiditis. Recently I had the flu shot for the first time ever and had an unbelievable bout of scleritis/viral conjuctivitis that lasted for 3 weeks! I truly believe that the flu shot caused this recent recurrence but no one believes me and tells me that there is no direct correlation. I recovered but now I am feeling that I may be getting conjunctivitis again. I was wondering if anyone knows whether or not once you get conjunctivis, whether you are more prone to it later? My husband is convinced that there is a connection between my scleritis and menstruation.. It is so frustrating but it is very helpful to "vent" with people that understand. Thank you. Any insight would be appreciated.
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Users who thank Carmen40 for this post: martinezalex 

replied February 21st, 2010
I have had scleritis for about a year and a half now. My eye doctor was treating it with prednisone drops. It worked for a while but my pain and bouts with the scleritis has increased in the last 6 months. I noticed it was coinciding with my menstrual cycles. My doctor said no but I know my body better than he. I was recently tested for HLA-B27 and tested positive. This is a genetic issue and is related to rheumatoid arthritis. I will be going to a rheumatologist soon and hope to rid myself of this eye issue. Hope this helps. There is a lot of information about this gene but it is very confusing. Interesting reading all of your comments. I thought I was playing "Stump the Doctor" there for a while.
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