Newly diagnosed with SLK/DES

[cctraveler]

I recnetly was diagnosed with SLK after a few months of trying to figure out my symptoms. Over the summer i developed extreme sensitivity to light and the irritating eyes that seem to go along with DES. On 9/11 a specialist in DE did stain testing and saw SLK. A 2nd opionion confirmed this at another major medical eye center.

My symptoms and the severity of them seem to puzzle the doctors compared to the degree of SLK so wondering if anyone has experienced this. At this point I am scheduled for surgical procedure next Thursday to remove the inflamation and diseased tissue from the upper whites of my eyes and the upper lids. I have tried all options to no relief yet so they will also do bioposy to determine what might be contributing/underlaying this. Thyroid test came back negative.

Symptoms: Constant Blinking, Squinting...can't keep eyes open ..this started early Sept and has not improved so I now can't drive, watch TV, read etc....I type with my eyes closed, It now has impacted my ability to work or do much else with out walking around with closed eyes.

Whites of eyes are bloodshot, particulary under upper lid. They actually feel sticky much of the time, like my lids are sticking. I can't stand lite, have special glasses, dim lights, wear hats to block overhead. Also have the gritty irrating feeling of typical dry eye but they think that has to do with SLK.

Treatments tried:
Restasis since 8/27, 9/11 Pred drops, 100 mg doxycycline, added Timolol to control pressure as it raised up to 31 withing days of being on Pred drops. Also use Gen Teel drops, gel and PM relief...all preservative free, and flaxseed and fish oil tabs in addition to healthy nutritional eating habits. Hot compresses as well. last week they put a contact on one eye to see if that helped but no changes so f/up appt Tuesday and then the scraping process on Thursday. Not a fan of this but I go days where I can't even function, have to just sit with eyes closed as if I open, the blink and squint continiously.

The doctor is puzzled by the severity of my symptoms so i wanted to reach out to see if anyone has had this happen.

Thank you...

[Gretchen]

Hi CC -

I do not have SLK, but do remember a posting on here with a person that had complete resolution from SLK with Restasis. And I remember seeing a study about this as well. Since you have been on Restasis for only 2 months, you may want to give it a little bit more time before you agree to surgery. If you are having such severe symptoms, surgery may be a risky bet at this juncture. Just my thoughts.

Good luck.
Amy

[msienkiewicz]

What is SLK?

Melissa

[cctraveler]

what is SLK...

Superior limbic keratoconjunctivitis (SLK) is a disease of unknown cause that causes recurring inflammation of the conjunctiva, which is the outermost coating of the whites of one's eyes. Specifically, in SLK, the conjunctiva under the upper eyelid becomes inflamed.


Typically this is discovered by a staining test vs just visual which is why early appts with eye docs don't always catch it, which was my case...

[belevans]

Slk

CC,
I had a diagnosis of DES and SLK several years ago. I have had itchy-eye allergy in summer all my life, but recently that bothers me much less than dry eyes and involuntary squinting, blinking and closure, which I am recently learning is called blepharospasm, and is often treated with botox injections to turn off the offending muscles. I'm 64.

A cornea specialist in Portland ME thought my symptoms were due more to SKL than to dryness, so in summer of 08 I had surgery to treat the SLK by removal of a bit of conjunctiva of one eye to smooth it out. Since then my blepharospasm has gotten slowly and steadily worse (i.e. probably no benefit from the surgery). The two eyes are about the same.

I am fairly certain that my blepharospasm is a result of tear dysfunction. I don't usually have it when I'm gardening or walking while wearing wrap-around glasses, reading, computing, talking or eating. It's worse when there is air movement over my eyes (no glasses), and driving even with glasses.

I don't like gummy drops, botox, scleral lenses, pharmaceuticals, etc. because they are just treating symptoms, not addressing the cause. Problem is, how do we determine the cause? I'm hoping that before I get worse or permanent damage from DES or blepharospasm, I and a doc will figure out the causes.

After the surgery, the surgeon recommended I see a consultant w Ophthalmic Consultants of Boston, who said my problem was that I am a non-blinker, i.e. incomplete lid closure, and recommended I train myself to blink better. Problem is, when my eyes are calm (like during the visit w that doc) i might not have good blink, but I also have no spasm, and am not aware. Then when I DO have spasm (e.g. when air is moving across my face) I definitely have complete closure then!! I suppose the timing of blink behavior, awareness, and spasms is very difficult for me to analyze logically. Incomplete closure is certain to be a factor for me -- one of several.

Also allergy, SLK, tear dysfunction. I'm still gathering information, and don't at this point know how I will pick out the next specialist to see!@#$#@!??. I would go as far as Boston (I'm in ME). Any suggestions?

Eric

[ringo]

patients have had great success with treatment with a higher concentration of cyclosporine (the active substance in Restasis), added initially to their other treatments,and then gradually tapering off the other treatments while on the cyclosporine.

[nycdryeyegirl]

CC,
I had a diagnosis of DES and SLK several years ago. I have had itchy-eye allergy in summer all my life, but recently that bothers me much less than dry eyes and involuntary squinting, blinking and closure, which I am recently learning is called blepharospasm, and is often treated with botox injections to turn off the offending muscles. I'm 64.

A cornea specialist in Portland ME thought my symptoms were due more to SKL than to dryness, so in summer of 08 I had surgery to treat the SLK by removal of a bit of conjunctiva of one eye to smooth it out. Since then my blepharospasm has gotten slowly and steadily worse (i.e. probably no benefit from the surgery). The two eyes are about the same.

I am fairly certain that my blepharospasm is a result of tear dysfunction. I don't usually have it when I'm gardening or walking while wearing wrap-around glasses, reading, computing, talking or eating. It's worse when there is air movement over my eyes (no glasses), and driving even with glasses.

I don't like gummy drops, botox, scleral lenses, pharmaceuticals, etc. because they are just treating symptoms, not addressing the cause. Problem is, how do we determine the cause? I'm hoping that before I get worse or permanent damage from DES or blepharospasm, I and a doc will figure out the causes.

After the surgery, the surgeon recommended I see a consultant w Ophthalmic Consultants of Boston, who said my problem was that I am a non-blinker, i.e. incomplete lid closure, and recommended I train myself to blink better. Problem is, when my eyes are calm (like during the visit w that doc) i might not have good blink, but I also have no spasm, and am not aware. Then when I DO have spasm (e.g. when air is moving across my face) I definitely have complete closure then!! I suppose the timing of blink behavior, awareness, and spasms is very difficult for me to analyze logically. Incomplete closure is certain to be a factor for me -- one of several.

Also allergy, SLK, tear dysfunction. I'm still gathering information, and don't at this point know how I will pick out the next specialist to see!@#$#@!??. I would go as far as Boston (I'm in ME). Any suggestions?

Eric

Hi,

I would highly recommend you to see Dr. Stephen Foster in Cambridge, Mass. He is considered to be the top specialist in his field (ocular immunology). He specializes in all inflammatory diseases of the eye (e.g. cornea, conjunctiva, iris, etc).

I had an acute severe inflammatory attack in my tear ducts and tear glands over a year ago, which left me with very severe dry eyes which I learned by contacting Dr. Foster and was later confirmed again by my eye doctor (who did his fellowship under Dr. Foster). Receiving this diagnosis recently was very important to me because it helped clarify what my diagnosis is, thereby giving my eye doctor an opportunity to establish a treatment regimen for me (I have an underlying auto-immune disease which is the cause of the acute inflammatory attack of my tear glands)

Dr. Foster can be reached at 617-621-6377 or 866-353-6377


I hope this information I've provided is helpful to you.

Pam

[mkay20]

I was also diagnosed with SLK about 3 months ago. My right eye started feeling like there was something in it all the time, it just felt like someone threw sand in it. My eye ached and I felt like I wanted to scratch my eye out all the time. It mainly affected my right eye for some reason, my left eye was spared for some reason. I finally made an appointment with an opthamologist and he diagnosed me right away and put me on Restasis/Lotemax. I stopped the Lotemax after a month but continued the Restasis. I have my good days and my bad days, but I think overall my eye is feeling better. I put the drops in both eyes because he told me I have SLK in both eyes but for some reason my right eye is more symptomatic.

Anyway,I know how frustrating it can be. I spent many days thinking my life was never going to be the same. I am just now feeling like I could return to my old self...someone who didn't focus on her eyes 24/7. It's amazing to me how much eye pain can effect ones life, it's like it just takes over.
I've been on the Restasis almost 3 months exactly and I feel like it's just now starting to kick in. I've read many studies since being diagnosed and I'm under the impression it can sometimes take 3-6 months to feel it's full efftect.
My symptoms are not fully resolved but they seem to be getting better with each passing week. I'm hoping I never have to have surgery but would definitely consider it in the future if I needed it.

I wish you the best of luck in whatever you choose to do.
Just remember there are others out there and you aren't alone.

MK