Anyone tell me more about Syjogrens syndrome. - LUPUS UK

LUPUS UK

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Anyone tell me more about Syjogrens syndrome.

lillyanne profile image
12 Replies

Ive got really sore eyes and was wondering if anyone else has any experience with this syndrome because I know very little about it and if anyone knows of anything that may give my eyes some relief. xxx

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lillyanne profile image
lillyanne
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12 Replies

Hello lillyanne

Yes I get sore red eyes occasionally especially with central heating on high I also get puffy dry eyes in the morning which are uncomfortable for a few minutes when I wake up. I was told you can have it mild or really bad so I believe my dry eyes is mild as I don't suffer with dry mouth.

Drops are best for eyes they soothe them and hydrate them too I use viscotears which is more like a gel you can ask for it over the counter at chemist it's about £4 a tube.

Do your eyes feel gritty too? How I describe it it feels like wind is constantly blowing in my eyes and I have to blink a lot.

Take care

lynzard profile image
lynzard

Morning! I get terrible itchy dry sore eyes. They said test for Sjorgen's was negative! Who knows. Hope yoou have a good day.

sazzyb profile image
sazzyb in reply to lynzard

Hi Lynzard, I believe that only 60% of Sjogren's sufferers test positive!

Hi - I have RA with some extra autoimmune issues, one of which is extreme dry eyes. I was using Hypromelose drops but my GP has just switched me to Lacra -Lube ointment for nighttime and Visco tears gel for the day time. These seem to be working well for me but it is trial and error. Its important to replace the absent tears regularly because otherwise the surface of your eye can become damaged and your eyes will be more prone to infections.

I had my eyelashes tinted the other day using an organic dye and the process of cleaning them thoroughly seems to have helped a lot too. I hope this helps. Its not nice and your optician can also advise on how dry the surface of your eye actually is.

gazorpf profile image
gazorpf

Sjogren's syndrome sometimes accompanies lupus and sometimes occurs on its own. It is another autoimmune condition. Sjogren's syndrome causes dry eyes and dry mouth. People with Sjogren's are often treated with Plaquenil (hydroxychloroquine). Preservative free artificial tears whenever you feel the need can relieve some of the discomfort. Talk to your rheumatologist and consider adding an opthamologist to your treatment team. Untreated, your salivary glands and tear glands can suffer permanent damage. Non alcoholic mouth rinses like Biotene help keep the mouth moist. If you have dry mouth, you should be sipping water all the time. Dry mouth can result in dental issues. Learn more here sjogrens.org/

Callingjen27 profile image
Callingjen27

I have it,its horrible.my mouth is so dry i can barely talk sometimes and my eyes are miserable despite eye drops from my optometrist.i have hashimotos and lupus too.

sazzyb profile image
sazzyb in reply to Callingjen27

Chew something, it really does help stimulate the saliva glands. I was told use it or lose it so I chew gum for as long as I can every day, it really has helped.

rustove profile image
rustove

Hi lillyanne

I have been diagnosed with sjogrens syndrome 5 yrs ago the dry eyes and dry mouth are the worst ever as one of the other members said eye drops is the only thing that relieves it I use poly tears nothing else works for me i put it into my eyes about every half hour or as needed .especially when in malls with the aircon or wind or even just being outdoors in the heat .Hope that bit of info helped you .Take care

Maureenpearl profile image
Maureenpearl

I too have Syjogrens syndrome and I use Viscotears all day and night and at nights I use Lacralube (which is quite greasy, but I find this helps with the rash by my nose). I also chew gum during the day which helps with the dry mouth (having dry mouth will cause bad breath) so I chew gum all the time when I am out and about.

lillyanne profile image
lillyanne in reply to Maureenpearl

You say that lacralube helps with the rash by your nose. Do you mean the typical lupus rash or is there another rash that's associated with sjogrens. I only ask because I have a rash on either side of my nostrils.

Maureenpearl profile image
Maureenpearl in reply to lillyanne

It is the rash associated with lupus but I find if I use Vaseline at nights this usually help but since I have been using the Lacrilube the rash have been a lot better because my eyes are very greasy and I just wipe my eyes with my fingers and then rub the sides of my nose with my greasy fingers.

lillyanne profile image
lillyanne

Thanks to everyone for replying to my post. I haven't officially been diagnosed with sjogrens yet but I'm pretty sure that that's what's wrong. I have very gritty eyes and also, Ive been having trouble swallowing. Very dry throat and my skin is unbelievably dry. Just another set of symptoms to add to the already long list I suppose. XXXXXXXXX

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