How do you deal with 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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Profile picture for doloridicorpo65 @doloridicorpo65

I also have had dry eye for about 40 years. Restasis works better for me than Xiidra. For a while my insurance refused to cover Retasis, which I had been on for so many years. I found a different opthamologist who was able to write a valid reason for my need for Restasis versus Xiidra based on a specific diagnosis.I have secondary Sjogrens related to Hashimoto's and RA. Over the counter preservative free is the wat to go for additional help. I can't afford the Thera tears with flax but used one box and felt it was better than the regular Thera I always use and buy at Sam's Club.

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@doloridicorpo65 I could not tolerate Restasis. Too much burning and stinging. Many years ago I stopped using all eye drops with preservatives as soon as preservative free became available. With moderate to severe dry eye, the preservatives do make things worse. Sounds like another thumbs up for tears with flax!

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@lacy2 I have used vitamin drops from India I found that when I used them I didn't have to use as many times before I put drops in about 4-5 times a day but with using drops and Dr put me on AREDSfor my M.D. I use maybe I 1-2 times a day here it also depends on the weather

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@lacy2 My very dry eyes seem to prefer the ingredient "hydroxypropyl methylcellulose. The first drop I ever used all those many years ago (1976!) was IsoptoTears 1% by Alcon. (No longer around). Today, I use Refresh Celluvisc (preservatives free) which is the same ingredient. I believe your Hylo is probably hyaluronic acid or similar which I have not had luck with.

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@lacy2 I use Ointment at night There are alot from diff co.but I like Gen teal eye ointment I keep a window cracked open at night Fresh air is important since houses are closed up during winter What does Dr say about your ocular migraines? Have you seen your opthalmologist and a neurologist? I googled and saw certain foods can add to these headaches I'm sure you have googled about ocular migraine the article I read said to see a neurologist also Your to young to have these problems Bless you do the best you can

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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

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@lacy2 It was some time ago that I tried that drop (around the year it first became available). It just didn't alleviate the dryness to the same degree as the Refresh Celluvisc (which has the 1% hydroxypropyl methylcellulose). It was just not as effective for me.

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Genteal for severe dry eye is over the counter and really helps me.

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Profile picture for lioness @lioness

@lacy2 I use Ointment at night There are alot from diff co.but I like Gen teal eye ointment I keep a window cracked open at night Fresh air is important since houses are closed up during winter What does Dr say about your ocular migraines? Have you seen your opthalmologist and a neurologist? I googled and saw certain foods can add to these headaches I'm sure you have googled about ocular migraine the article I read said to see a neurologist also Your to young to have these problems Bless you do the best you can

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Thanks for the great information. I too have chronic blepharitis and use the oculus pads. I'll check for the General.

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Profile picture for jmb73 @jmb73

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

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Joan, thanks so much for your input, all new info is valuable; I’m glad you’re still “going strong”, that’s my goal! ☺️ Helen

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One recommendation from my ophthalmologist that definitely works, is to wear swim goggles at night! I was amazed at how much moisture builds up inside the goggles. I may go back to doing that.

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