Sarc Eyes?

I have been having trouble with my eyes for awhile and went back to the Opthamologist for my 6 mos visit yesterday. Over the last month my eyesight has gotten extremely bad, I have alot of black floaters and flashes of light and my eyes burn all the time. The opthamologist said no sarc just dry eyes and gave me Restasis. Oh yea, blurry and double vision both. I'm afraid that he's missing something. Should I trust what he says or find someone else. He says he is familiar with sarc.

Report post

9 replies. Join the discussion

Manhester1777,
Same kind of thing here! Since Sarcs my eyes seem to be getting worse... Ive had the floaters for years, but I notice them more now that my eyes are always sore & dry! I am only using Zatidor, a now otc eye drop that keeps them moistened and eases some of the soreness.

I also have noticed my vision is getting worse, not as extreme as what your experiencing, but I can hardly see at all without my glasses.

My eye doctor also has sarc experience! and says to call him if things get bad... but whats bad??

I am looking for another Opt. but have not found one that has dealings with Sarcs... I guess more than one opinion would not hurt!

Good luck! let me know what you find out.
Thanks

Report post

I have had serious eye issues due to the sarc. But it was obvious due to the granulomas and inflammation seen in my eyes. Without insurance at the time, I put off much of my treatment with disasterous results. Legally blind in left eye and permanent scaring in the right. Thank God that (although warped and causing eye strain and inbalance) I do have good vision in my right eye enough to read on the computer and watch TV.

Yours may just be 'dry eye" or eye issues made by the medication you are taking. It is good to have second opinions especially when it comes to your eyes.

Even if it turns out to be 'dry eye' make sure you do regular opthamologist (use a Retinologist) visits to keep a check on the sarcoid. 'Uveitis' is the most common first symptom of sarcoid involvement. Also cataract and glaucoma (onset usually due to taking steroids) is also common. All of these things are treatable but must be caught early to avoid permanent damage.

Report post

Hello... sarc attacked my left eye thru uvetitis eight months ago... luckily, I was referred to a retina specialist in okc who understands our disease and is truly a specialist. We battled the uvetitis with pred. drops, injections and pills.. with the knowledge that we could have other complications... unfortunatley those arose thru a tear and retina detachment. I have undergone the buckle surgery and am now on a day by day basis as to whether we will get a good reattachment. My past experience would lend this advise... GO FIND A VERY GOOD RETINA SPECIALIST and don't bank on the advise of just any doctor.. this is your eyesight you are dealing with. Dr. SAM DAHR is my doctor in okc and has an excellent website providing outstanding information regarding uvetitis and issues relating to our disease.
good luck and god bless

Report post

the black 'floater's' you describe are often related to intermediate or posterior uveitis with inflammation of the vitreous the fluid that fills the eye. often it is related to inflammation along the pars plana region just behind the iris and in front of the retina. this part of the eye is very difficult to see without special techniques by the opthalmologist. new blood vessels can grow and cause bleeding in sarcoid eye disease. cystoid macular edema can cause distortion of vision too as well as detached retina often first symptom being flashers.
I would get a second opinion if I were you. Inflammatory eye diseases related to sarcoidosis respond very well to Disease Modifying Anti Rheumatic drugs such as Methotrexate and Cellcept alone or in combination with other classes of drugs. once vision is lost it cannot be regained in most cases so you must be your own advocate taking charge of your eye care on a routine basis and when things change, you have to get in to see a specialist right away.
dry eyes doesn't cause flashers or floaters by the way. it impacts the cornea and conjuctiva.

wishing you the very best,
Mike Bartolatz

Report post

I am seeing a retina specialist who prescribed predforte drops. Not seeing much improvement yet. Has anyone use something else that worked? Have also been taking elderberry extract as somone on this site swears by but no improvement yet.

Report post

GV55girl:

What were your eye symptoms? I made another appt with a retina specialist for next week. Marilyn

Report post

There is a list of ocular immunologists at the Ocular immunology and Uveitis Foundation website http://www.uveitis.org many are fellowship trained opthalmologists in Ocular immunology trained to use a steroid sparing approach to treatment. loss of vision can be from many things such as glaucoma, cystoid macular edema, cataracts and new blood vessel growth in the retina. these specialists will do tests to look for these things through angiogram of the retina and Optical Coherence tomography etc. early intervention with a steroid sparing approach to treatment is required to prevent permanent vision loss when uveitis is the diagnosis related to sarcoidosis. steroid eyedrops will not treat inflammation of the intermediate or posterior region of the eye as the molecule is too large to penetrate that deeply. a depressed scleral exam with the slit lamp microscope and hand held prisms is needed to be able to see the region just behind the iris called the Pars plana. sarcoidosis is the most common autoimmune disease related to pars planitis occuring in about 16% of pars planitis patients, pars planitis is also known as intermediate uveitis.

wishing you all the very best,
Mike Bartolatz

Report post

Hi,

my symptoms:

- Greyish/black spot in the right eye on the right, preventing the vision to that area.

Sometimes solid, but at times floting with waves.

University Hospital has scutinized the eye, said no problem in the eye so must be elsewhere. I guess the problem due to earlier diagnosed sarc.

What next afer an eye fails with sarc?

BR
Y

Report post

Hi again,

just to add: the area on right in the right eye that used to be blind and black with black floters rolling up and down has surprised me during past few days. I have namely now also seen bright luminous waves (sometimes with eyes shut even). And also a small bright luminous circle that quickly expands to quite a big bright luminous circle and then vanishes.

Now 2 various main univ. hospital eye docs have said to me the eyes look ok when looked into with their gadgets (I guess some kind of microscopes). Hope MRI will tell some more just in few days...

Yours S

PS:
I will have MRI day after tomorrow, wonder if they can recognize what's causing these curious symptoms in my eye field - or let's see if they come out as blind as teh univ. level eye cocs - seeing noting when looking at the eye - that has blind spots, floaters, luminous waves and luminous expanding circles,

BR S

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders