Sjögren’s Disease

By swoocher

1 min read

I’ve had severe RA for 8 years. Many years undiagnosed. My Sjögren’s disease is out of control. I use so many prescriptions for my eyes, but nothing seems to help.

I’ve been to the ophthalmologist many times. I think he’s given up! My eyes are so dry and painful by the end of the day that I cannot read or watch TV. Also bright lights really bother me. Any tips on how to cope with this?

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Mary Sophia Hawks Moderator & Contributor
swoocher, Thanks for reaching out! I recently developed symptoms of Sjogrens, but have not been diagnosed yet. I use my Refresh Relieva eye drops every 3 hours or more. I have also found that if I get the least dehydrated, my eyes are worse. Talk with your ophthalmologist about glasses that block blue light. I found mine on a website and use them with computer and close work. I also use night glasses (also online) to reduce glare while driving. You may need to seek a second opinion with another ophthalmologist. Ask your rheumatologist for a recommendation. Please keep us up to date. Mary Sophia (team member)
1. sammie Member
 Hi, I have Sjögren’s syndrome and see an ophthalmologist once a year. He has me using prescription eye drops called Restasis. You put in eyes twice a day...am & pm. He also said to use Hylo eye drops that are not prescription, but you have to go to the Pharmacy counter to get them. Both drops are very expensive, but worth the price. He put in plugs in all my tear ducks at the beginning and had me on 3 or 4 prescription drops at the beginning one being a cortisone. Call around to ophthalmologist’s offices in your city and ask if the doctor deals with Sjogrens Siyndrom before going back to the one you are seeing now. Good luck.
Daniel Malito Moderator & Contributor
<inline-mention user-id="3243016" username="swoocher"/> I use eye drops like crazy, but as you know, they sometimes make things better but usually make it worse! Ha ha. I know they make contacts that actually store liquid but I decided not to get them for me. I keep a humidifier on pretty much 24/7 even with an AC on, especially with the AC on since it dries things out. I know there are doctors who specialize in eye issues related to chronic illness, etc, maybe see if there's any in your area? I've had so many issues with my eyes - there was even a period I was getting a needle directly into the eyeball once a month. That was the funnest of all.... LOL You are not alone, trust me, let us know how it goes. Keep on keepin' on, DPM
1. sammie Member
 Hi, I have Sjögren’s syndrome and see an ophthalmologist once a year. He has me using prescription eye drops called Restasis. You put in eyes twice a day…am & pm. He also said to use Hylo eye drops that are not prescription, but you have to go to the Pharmacy counter to get them. Both drops are very expensive, but worth the price. He put in plugs in all my tear ducks at the beginning and had me on 3 or 4 prescription drops at the beginning one being a cortisone. Call around to ophthalmologist’s offices in your city and ask if the doctor deals with Sjogrens Siyndrom before going back to the one you are seeing now. Good luck.
2. swoocher Member
 I’ve been. Using Restasis for over a year. Usually it’s enough. But now I need a steroid eye drop as well when it’s really bad.
swoocher Member
Thanks for all the suggestions. Just started a new infusion ( my fifth) and maybe it will help.
sammie Member
Hi, I have Sjögren’s syndrome and see an ophthalmologist once a year. He has me using prescription eye drops called Restasis. You put in eyes twice a day…am & pm. He also said to use Hylo eye drops that are not prescription, but you have to go to the Pharmacy counter to get them. Both drops are very expensive, but worth the price. He put in plugs in all my tear ducks at the beginning and had me on 3 or 4 prescription drops at the beginning one being a cortisone. Call around to ophthalmologist’s offices in your city and ask if the doctor deals with Sjogrens Siyndrom before going back to the one you are seeing now. Good luck.
mcadwell Member
Have you had the tear duct plugs put in? I don't have this yet but hear it can help.
Monica Y. Sengupta Moderator & Contributor
Hey <inline-mention user-id="3243016" username="swoocher"/> ! So sorry you're going through this. As someone else who has Sjogren's, I can definitely understand this. I downloaded an app for my computer which changes the screen light from cooler to warmer tones (which are easier on my eyes). I switched my light bulbs to more yellow-toned bulbs and I just use the heck out of my eye drops. Every hour, I also just close my eyes for a couple of minutes and let them rest - eye fatigue is a huge factor in how my eyes feel. How have you been since posting?? ~Monica
1. Lynn Marie Witt, MSOT Moderator & Contributor
 @swoocher I am so glad the suggestions were helpful. Happy to hear that your Remicade is helping you. Reach out anytime. Sending Virtual hugs. Just Keep Swimming...Lynn Marie, "RHeumatoidArthritis.net Team Member" 
2. swoocher Member
 Better. Cold, rainy weather is not my friend
not found
I use eye ball grease when I sleep to let my eyes recover from day time use. It comes ina 10th of an ounce tube andmelts at body temperature, OTC. and next morning I have found that my day starts better.