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Clementine

Sjogren's

11 posts in this topic

Does anyone else with Sjogren's have eye pain? It's so weird, my eyes actually hurt a little, as in a bruised feeling. I'm new to this dry eyes stuff. I have had off and on eye slime and irritation for 3 months now. I'm doing what the doctor says to do but it's really not a lot of relief.

 

I'm using warm compresses, Tobredex when prescribed, artificial tears, Restasis, wearing glasses (no contacts) and taking flax seed oil. What else is there?

 

I am really sensitive to light and have a constant sting in my eyes. Poor me..LOL.

 

I blame some of this on Sweet, for getting me addicted to online Scrabble. I am pretty sure the computer isn't helping, LOL.

 

Clem~~

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Hi Clemmie,

 

About the only thing I can contribute is: not all artificial tears are created equal! I changed brands until I found one that really does help. My ophthalmologist told me there was no limit to the number of times a day I can use it. I blame the dry climate, myself, coz I couldn't possibly be spending too much time on the computer! :lol:


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Sounds like you're doing just about all you can.

 

The only other thing to consider is whether any drugs that you might be taking contribute to the dryness (many drugs list dry mouth -and presumably eyes - as a side effect). Also, caffeine tends to make dryness worse.

 

You might ask your doctor about the drugs Evoxac and Salagen which have helped some people.

 

Craig

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Hi Clem,

 

I can't add much to this...

but I do know that Sjogrens can give us grief, when it comes to the things all of you already cited.

 

My eyes had the red spider veins "on", yesterday. I know that my eyes are exceptionally dry right now, too.

 

It might be good to check with your dr?

 

Let us know how you do!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Clem

 

Although I don't have Sjogren's I did read up on a website for Sjogrens sometime ago on the forewarned is forearmed basis. A lot of the patients' stories mentioned actual eye pain, some described stabbing pain as an early symptom. There's a link on this site to it under patients' stories. As with sclero they often presented in different ways and not just with dry eyes.

 

Hope this helps.

 

Amanda

 

P.S. My sister has follicular lupus and has in the past and is now suffering with very dry eyes.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Jen see if your doctor can scribe you evoxac for your sjogren's and see if that helps some. That is what I take and it helps. Sam


Sam

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Got to earn my keep - Evoxac is also known as cevimeline and there is a link to it on our Sjögren's page under Treatments for Dry Eyes. It is also found under Evoxac in the section on Treatments for Dry Mouth.

 

Hugs!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Clem,

 

Let you know tomorrow if the punctal plugs are working. You still have to use the artificial tears with them too.

 

Take care,

 

Judy


A happy heart is good medicine.

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Hi Clem,

 

I also have Sjogren's and I get stabbing pains in my eyes sometimes. I think it is worse when I haven't slept well the night before. Sometimes bright lights can really set it off!

 

The worst news of all I have for you is that I've found staring at any screen (computer, tv, pda, etc.) worsens my eyes, because I don't blink often enough at those times. And I can only remember to force myself to blink for a few minutes, at best, then I forget and am thinking about something else.

 

So I had to make some quality decisions, as there is truly a limit as to how much medical science and pills and ointments can fix, when dealing with Sjogren's. My quality decision was to give up watching tv; my only exception is truly major, very historic events (like a few hours for election night, once every four years) and when I am exercising (boy, does that ever limit it!!!).

 

Then I also keep tabs on my computer time. I don't do any computer games (oh arhghgh, sigh) because I chose to devote my eyes to ISN stuff. I also take frequent breaks, look into the distance frequently (it rests the eyes when we refocus), have a very large monitor, and reduce the glare from it. Still, I can get stabbing pain and blurriness sometimes...and then I need to respond to it (and blink!) and take an eye rest, for however long. It's like Raynaud's, you ignore it at your own peril.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi clem,

 

The punctal plugs are working somewhat. The optometrist wants to place punctal plugs in the upper tear ducts since we have only done the lower ducts. Even with that must still use the artificial tears. You might want to use a humidifier in your room or house to help. My eyes don't hurt anymore and they did hurt alot but, have to keep up with all the treatments that are prescribed otherwise I am in trouble. Take care.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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