Recurring eye inflammation

Thank you for comment I have been checked for both of those. Its a corneal issue what I was told but they do not know why.

Do you know whats causing this? 

No. None. I have no clue I even changed my make up. But no luck. Very very frustrated it's fixing to flare up again and I will have to take steroids just so i can stand it. I do not like putting anything in my body that's not natural

Yes. They are checking me for that I have appt with a rheumatoid Dr in 2 weeks. But all my tests so far comes back negative

Yes sometimes they do. Mine were but I still have an auto immune disease. Blood work is not definitive. Some hints are there...raised esr and crp were all I ever had. Everything else normal. But that is common lots of us have normal blood results. The inflammation in the eye is a key sign.

I go in 2 weeks to see rheumatoid Dr. Hopefully good news. I'm very frustrated

Oh I know it is horrible and so uncomfortable for you. I hope you see a good doc and get the right treatment. It is no good feeling bad like that all the time.

No it is scary

I know but you are getting the right sort of treatment. Did they give steroid drops during the flares??

Yes. Unfortunately they don't work.

Steroid drops dampen down the inflammation. In advanced countries sight loss due to inflammation us so so rare brcause we get good fast frontline treatment. In poorer countries you would be in a more dangerous situation.

Do they work initially thdn it comes back?

I have been using novotears. My own blood serum to help

At first but now nothing going seems to work

Novotears won't work for inflammation. You need steroid eye drops which you put in your eyes once an hour and gradually reduce the dose over a week. Did you have that?

Yes. I have had steroid drops I was using them and it gave me a corneal ulcer in right eye.

Ok. You might need to take steroids or something to control the inflammation then. When is your appointment? 2 weeks??

Yes. Medrol several times

Yes I read your earlier comment. Can you see the theumatologist sooner. Not saying that to worry you at all just think you'll feel better when you see someone else x

Unfortunately no. I asked hopefully they will have a cancellation

Did that help? Why did they stop it?

Use of steroids in eyes is prohibited and should never be used, unless it is emergency and that too under supervision from ophthalmologist. 

 

It was. It caused me to get corneal ulcer in my right eye. I have been to 2 specialists opthmalogists they have no idea why it's happening.

Yes that is true but inflammation in the eyes is an emergency. You can lose your vision if it isn't treated. I assume peaches was prescribed them by a specialist.

Thsts what im afraid of

I know you must be worried. I just believe there will be an answer once you see the rheumatologist. There are other meds which can get your inflammation under control they are just the kind of meds a specialist needs to prescribe and monitor. Just try not to get too stressed as it won't help.

Peaches if I were you I would contact the Vasculitis Foundation in the US tell them about what's happening to you and ask their advice. They are really well informed and understand about inflammation in the eyes. They will advuse you what to do.

Peaches as a matter of interest...you say you got an ulcer in your eye. Do you get any other ulceration?

Oh my thank you for that information. I have never had any issues with my eyes ever. Until a year ago. Been in good health. Im only 46. So this is scary and difficult. And been very costly with no results

Yes ma'am I did. From all steroid drops

Only in your eyes though?

Yes. When it happens very painful. It hurts so bad. It' seems every flare up its getting worse and the duration is lasting longer

You don't get canker sores in your mouth ir anything?

Oh no never had those ever. I have never had any issues health wise. Until my eyes

Ok well Peaches you speak with the Vasculitis Foundation. Have a chat about what is going on and then let ys know how you go. I will be thinking of you. And any further inflammation go get checked straight away. Xx

I really appreciate it. I feel all alone. These drs seem like they want to give you a script and really not figure out what the issue is thank you.

Yes indeed. Had years of that Peaches til I was diagnosed x

May I ask your dx?

Sure Peaches. I have Behcet's syndrome. Very similar to Sjogren's but with the added joy of ulceration.

There are so many auto immune diseases out there which people never know about until they or a loved one gets it

Happy to say I am currently in remission x

Bless you. Glad you are in remission. Thats fantastic. The dr said it was hard to sometimes dx sjogrens disease. The biopsy of my mouth came back negative.

Yes very hard to dx. Can be negative even uf you have it. All of these diseases are hard to dx. Getting inflammation in the eyes was one of the defining moments for me. I was seeing an immunologist when that happened who was wavering over dx. That sealed the deal x

Peaches, I dont think it is vasculitis of the eye. Cause your messages here say that you dont have any other symptoms except that in the eye. 

Vasculitis usually dont strike only in the eyes. 

It will have skin, joint and abdominal sysmptoms, besides dry mouth. 

Rocky. Please forgive me if I have a misspelled word I am having a flare up it just started. Yes it is only in my eyes. Nothing else. I'm very upset with this. The rheumatoid Dr can't get me in for 2 weeks so thats another 2,weeks I have to suffer. Im going to get a script of medrol oral. To take. Its a temporary fix but I have too.

Hi Rocky sorry to disagree with you there but I am a member of a help group for sufferers and while the majority have other symptoms, there are people for whom it only affects one area. I know people who only have eye issues and others who only have, say, joint problems and nothing else. For some it only affects their skin. It is a very unpredictable disorder which is why even doctors struggle to recognise it.

Joint problem affliction is called reactive arthritis. 

There is also disorder affecting where the skin is inflammed. 

The eye disorder when it gets inflammed is called infective conjuctivitis or allergic conjuctivitis. 

 

Peaches, Do you have watery or dry eyes ? 

Not in my case Rocky. I had uveitis related to vasculitus.

Uveitis can be caused by many other resons, not just autoimmune disorder: 

Infectious - caused by known ocular and systemic pathogens.

Infiltrative - secondary to invasive neoplastic processes (sometimes referred to as masquerade syndromes). Intraocular lymphoma may present as a chronic uveitis in older patients. Intraocular tumours may also occasionally present with posterior uveitis.

Trauma - a common cause of anterior uveitis. Sympathetic ophthalmia (sometimes referred to as sympathetic ophthalmitis) is a rare form of bilateral panuveitis in response to trauma or surgery to one of the eyes. See also separate Sympathetic Ophthalmia article.

Iatrogenic - caused by surgery, inadvertent trauma, or medication (eg, rifabutin, cidofovir).

Inherited - secondary to metabolic or dystrophic disease.

Ischaemic - caused by impaired circulation.

Idiopathic - when evaluation has failed to find an underlying cause. Most uveitis, particularly anterior uveitis, is idiopathic.

Immunosuppression causes a particular risk of infection-related uveitis.

Yes I know there are other causes of uveitis Rocky. However in my case it was diagnosed by an opthalmologist specialising in vasculitis and by an immunologist who was leading my treatment for vasculitis. I think that they both had enough experience of the disease to diagnose me. I have total faith on their ability to dx me along with several other specialists I have seen over the last 13 years who deal with the disease.

Yep, thats good... I also agree that it was uveitis. 

Did they explain why it was vasculitis? 

I read that you had behcets ( a variable vessel vasculitis) in your previous message...

 

Yes that's why...because I was already at that point undergoing diagnostic tests for Behcet's which is, as you will know, a form of vasculitis. The uveitis presented with other prominent features of disease activity. I was quite unwell at that time. I have never had a reoccurence of it because I have been treated continually for Behcet's since then.

Corneal ulcer is usually treated with antibiotics.

Have u got an eye hospital locally?