Dry eyes

Posted by maryy @maryy, Jun 10, 2019

I have dry eyes due to sjogren’s syndrome. Does anyone else deal with dry eyes?

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@maryy

Thanks . I have Sjogrens Syndrome too, unfortunately. Do you take any medication for Sjogren? Methotrexate or Azathioprine?

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Do the 2 meds you mention help?

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I have dry eye from Sjogrens autoimmune and use Klarity C eye drops compounded by Imprimis . They are 0.1% cyclosporine which is stronger than Restasis and burns much less. I tried Xidra for 5 months which burned and did not help and was expensive. Klarity C are $60/month. I get them through my doctor at Carolina Eye Clinic.

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@jbk

I have dry eye from Sjogrens autoimmune and use Klarity C eye drops compounded by Imprimis . They are 0.1% cyclosporine which is stronger than Restasis and burns much less. I tried Xidra for 5 months which burned and did not help and was expensive. Klarity C are $60/month. I get them through my doctor at Carolina Eye Clinic.

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Hello @jbk and welcome to Mayo Connect. It sounds like you have found the perfect eye drops for Sjögren’s syndrome dry eyes. That’s just great! Do you see an ophthalmologist who specializes in autoimmune disease and how I’d you find him/her? Maybe you could tell the other members how you found this doctor, if you don’t mind.

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@jbk

I have dry eye from Sjogrens autoimmune and use Klarity C eye drops compounded by Imprimis . They are 0.1% cyclosporine which is stronger than Restasis and burns much less. I tried Xidra for 5 months which burned and did not help and was expensive. Klarity C are $60/month. I get them through my doctor at Carolina Eye Clinic.

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Thanks. I have dry eyes from corneal dystrophy, bur I will ask my eye doctor about these drops. Do you know if they are specifically for sjogren's? Are they a prescription, or does the doctor dispense them from his/her office?

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@alexandraeugenia

Thanks. I have dry eyes from corneal dystrophy, bur I will ask my eye doctor about these drops. Do you know if they are specifically for sjogren's? Are they a prescription, or does the doctor dispense them from his/her office?

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I have dry eyes from Sjogren's and my ophomologist has put temporary plugs in my eyes and they work great. He doesn't like the permanent ones as he said sometimes they get infected. I also use Restasis, Systane ultra and Genteal for dry eye. Systane and Genteal are over the counter. He has me wash my eyes with Ocusoft lid scrub a minimum of twice day. Then I rinse them with cosmetic rounds. I almost lost my vision from dry eye and this doc saved it. Dry eye can be dangerous. I was at work and couldn't see out of my left eye. I called the office and they said to put Systane Ultra in my eye every 15 minutes for 2 hours and if my vision didn't come back, I had to be seen by them. It was a Sat. and the doc said he would wait until I called. My vision came back but that scared me. So be vigilant and if your eyes feel sandy or dry use drops. You can use the non preservative over the counter drops too. Take care, Joan

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@becsbuddy

Hello @jbk and welcome to Mayo Connect. It sounds like you have found the perfect eye drops for Sjögren’s syndrome dry eyes. That’s just great! Do you see an ophthalmologist who specializes in autoimmune disease and how I’d you find him/her? Maybe you could tell the other members how you found this doctor, if you don’t mind.

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I use Klarity C (Imprimis) but still have lots of eye inflammation which limits my computer usage. My cornea became so dry that i lost vision in my left eye for a week.. my doctor at Carolina Eye is a cornea and cataract surgeon. Any ophthalmologist should be able to prescribe Klarity C and order it for you from ImprimisRX. It was reviewed in the Sjogrens Quarterly (summer 2021) and found to be “Safe and effective”. Plugs did not help me or LipiFlow treatment. I do soaking

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@jbk

I use Klarity C (Imprimis) but still have lots of eye inflammation which limits my computer usage. My cornea became so dry that i lost vision in my left eye for a week.. my doctor at Carolina Eye is a cornea and cataract surgeon. Any ophthalmologist should be able to prescribe Klarity C and order it for you from ImprimisRX. It was reviewed in the Sjogrens Quarterly (summer 2021) and found to be “Safe and effective”. Plugs did not help me or LipiFlow treatment. I do soaking

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What if your opthalmologist insists only prescribing restasis? That's my case.

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…sorry dont know how to help but many years ago and very very dry eyes optometrist said ask your family doctor about Sjogren's: I did, the doctor just looked at me and said: You don't have Sjorgrens. Ok. several years later dentist said same thing as mouth so dry..but this time I had a different family doctor and asked him same question: Open your mouth, he said, I did, he took a quick look and said you dont have a dry mouth! That was it.
I have been using every dry eye drop in the store and now for past year Hylo but also now have narrow angle glaucoma 2018 so its drops, drops , drops. Looking back over the years I wish I had pushed for testing for Sjogren's … but I have white coat syndrome and let drs walk all over me, or did.
After 2nd dr left town I had no dr for 2 years except over phone, recently I got a Nurse Practitoner and she is amazing! But have such a list of illnesses now she is plowing thru them and I will wait to ask about Sjogren's as prob too late; but I feel it was a distinct possibly.
I try and be polite etc with medical personnel but I now, at older age, realize we have to be pro-active and if another medical professional suggests something, maybe I will ask them if "they" will contact our family doctor to discuss?? Probably as doctors thought I was suggesting, they ignored but may have listened to the optometrist and dentist??
lynnie.. could your optician or even family dr phone the ophthalmologist and suggest it even for trial basis: good luck 🌹

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@libertyusa

I had cataract surgery in one eye. I elected not to have same ophthalmologist do the other eye because my new eye now has a pupil larger than in the other eye (I think from stretching during surgery) and I have a very slight eyelid droop (again from a tool he used). He told me he had trouble dilating my eye prior to surgery (but later on, he denied he said that ?!?). THE GOOD NEWS IS MY DISTANCE VISION HAS DEFINITELY IMPROVED and the surgery was not painful. But, with regard to your question on dry eyes – I use a computer daily for many hours. I use drops (Systane and others). But what I want to mention is the BRUDER EYE PADS. The Dr. suggested them and I find them to be very good. The mask (eye pads) has granules in it; you put it in the microwave for 14 seconds. Then (it cannot be TOO HOT) put them over you eyes for 5 minutes. I think they help and I believe the heat opens the tiny blood vessels in your eyelid which simulates tears. (NOW, I MAY NOT HAVE EXPLAINED THat CORRECTLY, BUT I DO THINK THEY HELP). Best wishes, "GolfandTennis".

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@tennisgolf. I'm a member of the Dry Eye Club too. I've had GCA since March of 2019, went blind in one eye (Optic Neuropathy) as one of the many results of that nasty autoimmune disease. I've had three cataract surgeries, and use Systane eye drops x 4 daily, plus Monoprost eye drops (gel) Rx once daily at bedtime to control the ongoing development of glaucoma. I also had a laser procedure (Selective Laser Trabeculoplasty – "SLT") in March, which had a 50/50 chance to relieve or lower the eye pressure, but it wasn't successful.
My last appointment with the eye specialist was a happy one, in that she was very pleased that the eye pressure numbers have remained stable on that eye drop regime. I see her every three months to keep close watch on it, since it's so important not to lose the sight in my other eye.

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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!

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@SusanEllen66

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!

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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?

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@colleenyoung

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?

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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…

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