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Sjögren’s Syndrome & Xiidra
Old 10-24-2020, 10:15 PM
  #1

Anyone dealing with Sjögren’s syndrome?

I’ve developed dry eyes and dry mouth that’s gotten progressively worse over the past few years. OTC drops for allergies and dry eyes didn’t work. Neither did prescriptions. We tried not wearing contacts and not wearing makeup. No help. Tried limiting screen time, but that’s been near impossible nowadays.

I had a dry eye test last week, and it showed significant inflammation in one eye and milder inflammation in the other. The first thing the doctor asked is if I had lupus. I have never been diagnosed because the blood test never shows anything even though I have multiple other indicators and two cousins with lupus.

The only thing primary care, allergist, nephrologist, endocrinologist, gynecologist, and now ophthalmologist agree on is that I have some kind of autoimmune issue. Eye doctor says that Sjögren’s is very, very common with lupus patients, and she strongly believes that is my issue.

So, is anyone dealing with Sjögren’s? Or does anyone use Xiidra drops for dry eye? I started them yesterday. They’re super expensive, though.



Last edited by Ima Teacher; 10-25-2020 at 10:05 AM..
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Old 10-24-2020, 10:41 PM
  #2

I have Sjogren syndrome, and some kind of auto immune condition that doesn't fit in the boxes... I took Plaquenil for about 5 years and it helped a lot. I stopped taking it a few months ago when I retired and moved. Less stress, less pollution and lots of exercise definitely help.
I still use eye gel regularly, works better than drops. I carry a bottle of water with me everywhere and take a sip every few minutes.
Hope you find something that works for you!
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Old 10-25-2020, 03:39 AM
  #3

I don't have that, but I have had dryish eyes for years and have worn glasses all day long since I was 5 and have a weak blink, so less tears ???

A couple years ago eye doc told me to take a high quality fish oil daily and it helps some. Not sure if that would help in your situation.
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Old 10-25-2020, 04:30 AM
  #4

I don't have that, but I do have dry eyes. My ophthalmologist recommended flax seed oil tablets to alleviate symptoms. Taking those has worked for me.
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I suspect I may have it.
Old 10-25-2020, 09:22 AM
  #5

I wake up with a cotton mouth during the night every night. My eyes are dry and my skin is dry. I take Lisonopril to keep my blood pressue controlled. I have an autoimmune condition called IgA Nephropathy with causes kidney failure. The whole BP and kidney decline is a cycle. One causes the other.

Anyway, the Lisinopril does dehydrate a person. I have noticed my dry eyes are worse now that I take it and have to watch for plaque build-up on my teeth because my mouth is so dry.

I am a retired teacher and now working for an optometrist. He prescribes Xiidra often. There are some savings programs that your dr. might be able to find for you. I know it would be $500 monthly for me as my insurance does not cover the RX.

Also a tip, if you get the weird taste in your mouth when taking it, press the bumps at your eye openings near your nose for about 10 minutes. That blocks a duct and it prevents the metallic taste.


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My mom has Sjogrens
Old 10-25-2020, 02:04 PM
  #6

She has never suffered from dry eye, so I don't know what can be used to treat it. Can I ask those of you who have it, what your other symptoms are? She can barely walk, gets infections often, had issues with nerves and joints...

Just curious as to how it manifests in different people.
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Old 10-25-2020, 02:57 PM
  #7

SoCalTeach,
I have dry eyes, dry mouth and very dry skin ( to the point of bleeding if my pants are too tight). I can manage these symptoms with drops, water, good soaps etc...
I also have sore and stiff joints, but I also have OA and some form of RA. Exercising everyday , especially yoga and long walks, help a lot, combined with weekly massages and regular osteopath visits.
I constantly feel like I'm about to get a cold... I drink turmeric + ginger + cinnamon tea daily and have a strict whole food, no sugar, no dairy diet. That helps a lot.
Fatigue is the one issue I don't know how to deal with, except with lots of naps and long nights
All in all, it's much more manageable since I'm retired, but I'm very careful with what I can and can't do to make it work.
Hope that helps a bit!
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