Superior Limbic Keratoconjunctivitis. I have been plagued with this condition for about 10 years. Anyone else?
My eyes are sometimes so dry my eyelid literally sticks to my eyeball. Horrible disease! In the past I have worn “bandage” contacts so the eyelid doesn’t scrape my eye too much when I blink. It’s gotten better the last few years. I notice that it is almost seasonal now. Ugh!
Nothing specific. I’ve tried drops, tear duct plugs, and warm compresses. The compresses followed by a light massage to release the oils in eyes helps the most.
I am not surprised that you had to look it up! I know it’s rare. So also is the polyarthritis nodosa form of Vasculitis that I have…
I have Sjogren 's syndrome which causes dry eye and dry mouth for many years! I also use Allergan's Refresh eye drops twice a day. Just read that Krill oil may help relieve dry eye symptom. Start taking it last week instead of fish oil!
What brand of Krill oil is it helping...........my eyes are sooooo dry. I have used Restasis and Xiidra and lots of preservative free eye drops......... I don't know what to do. My eyes make my whole body hurt. I hav been taking Tramadol to help. Not sure if this is good for me
I have Mixed Connective tissue disease with overlap of Scleroderma. I have had plugs for over ten years. They help, but my eyes And mouth get drier as I get older. I’m also take meds for This and they make the dryness worse as well.
We live in Southeast Georgia where it is very humid. I see my Rheumatologist every 3 mo and go to a ophthalmologist that specializes in dry eye. I also have RA. My right eye keeps getting inflamed and I am currently am using lotemax again to try to calm it down. I have tried restasis , Xiidra, and currently on Cequa, but I am going back to Xiidra after using the lotemax 1 week. I think it is better than Cequa. I am going to keep it in frig to help with burning. The ophthalmologist told me Monday that my tear glands are producing at all and my corneas are severely dry all caused by Sjögren. I ordered the Bruder mask after reading on this site and am hoping it it help. Thanks for reaching out.
I have had Sjogren's for most of my life but was diagnosed 30 years ago. My dentist said to only use Biotene toothpaste as it doesn't have the drying ingredient that other toothpastes have. It has saved my teeth. I get frequent canker sores and put the Biotene gel on the sores and they go away within a few days. Since it has given me a dry cough, I use the Biotene mouth spray. That really helps at night too when my mouth and throat get really dry. My favorite eye products are Genteal for severe dry eye- (I use that at night or in dry places like hospitals), and all of the Systane products. The above items are all over the counter and there are usually coupons available. I also use Restasis twice a day and have tear duct plugs. With Sjogren's you are prone to have blepheritis which can be really serious if not taken care of. It's bacteria that builds up on the eyelids. So I us OCuSoft Original lid scrubs twice a day. Be careful of the ones that last all day as they burned my eyes. I do warm compresses at least 4 times a day. The "cosmetic" rounds are perfect for compresses and are 100 for $1.49. If your parotid glands get blocked, you should use a heating pad for 20 minutes and massage from the ear down. I used to be a phone counselor for the Sjogren's Foundation and the above items seemed to work. Of course if you find something better, use it. I am taking CBD/THC for the joint pain. Since you are new to Sjogren's , it can be a scary diagnosis. But I am 76 and still going strong. The maintenance is a pain but it works. I will try to answer any questions you may have. Good luck and wear a mask all the time. Joan
I have the same. Takes daily maintenance. For dry mouth: brush 2X daily for gums and teeth; waterpik once a day; xylimelts or biotene.
Dry eyes: gently scrub eye lids in the morning; systane liquid tears; PM ointment at night; RX for pataday. I am finding that an eye mask at night helps keep moisture in.
It started many years ago with an enlarged parotid gland. Then aching in my hands and elevated AST and ALT. At that time I was DX with MCTD.
It was many years before they added Autoimmune hepatitis, Interstitial Lung Disease, and Scleroderma.
SusanEllen, I had to look up superior limbic keratoconjunctivitis to learn more about it.
- Superior limbic keratoconjunctivitis https://rarediseases.info.nih.gov/diseases/10940/superior-limbic-keratoconjunctivitis
Besides the "bandage" contacts, what treatments help?
Nothing specific. I’ve tried drops, tear duct plugs, and warm compresses. The compresses followed by a light massage to release the oils in eyes helps the most.
I am not surprised that you had to look it up! I know it’s rare. So also is the polyarthritis nodosa form of Vasculitis that I have…
What brand of Krill oil is it helping...........my eyes are sooooo dry. I have used Restasis and Xiidra and lots of preservative free eye drops......... I don't know what to do. My eyes make my whole body hurt. I hav been taking Tramadol to help. Not sure if this is good for me
What kind of serum is this?
Where do you get Zaditor
What test was for the Scleroderma? What are your symptoms?
I live in SE Georgia. What rheumatologist do you go to? i need a good one.
What CBD/THC is good?
Thank you for your response.
It started many years ago with an enlarged parotid gland. Then aching in my hands and elevated AST and ALT. At that time I was DX with MCTD.
It was many years before they added Autoimmune hepatitis, Interstitial Lung Disease, and Scleroderma.