Very dry eyes but mouth normal. Sjogren's Syndrome?

Posted , 5 users are following.

I was recently diagnosed with Lichen Planus and also have sore, itchy, slightly inflamed eyes.  My optician did a Tear Break Up Time and it was 2 - 3 seconds, whereas I understand the normal score would be 10 - 12 seconds, so my eyes are extremely dry.  The drops and ointment I was prescribed by my GP don't seem to be making a deal of difference and I am going to go back to ask to see an ophthalmologist.

It's been suggested by friends that I may have Sjogren's Syndrome, but my mouth is absolutely fine.  So my question is:  can you have Sjogren's syndrome just with very dry eyes? 

0 likes, 8 replies

8 Replies

  • Posted

    I have Sjorgrens and don't have a problem with my eyes but have an extremely dry mouth along with fatigue and neuropathy. 

    • Posted

      Thank you for your reply, Beverly.  I didn't even realise that Sjorgrens had other symptoms, such as fatigue and neuropathy.

  • Posted

    Sad to say, Cheetah, that you can have SS without having a dry mouth.  We cover the spectrum from zero problems to extreme problems for both kinds of dryness.

  • Posted

    Hi Cheetah,

    As aitarg says, Sjogren's syndrome covers a very wide range of symptoms and very few people have all of them. There's also the issue that some symptoms go into flare-up and remission, so the disease can seem to wander all over your body - which is the case for me. In fact, Dr. Sjogren was an eye specialist (in the 1920s) and it was initially thought SS was just an eye condition. In addition to that, some people with SS don't get either dry eyes or dry mouth!

    Very dry mouth was my first SS symptom 22 years ago - long before I got a diagnosis - but it started clearing up after about 6 months and had completely gone by the end of a year. Since then it's only ever returned for very short periods. The dryness in my eyes came and went for the first 20 years, but now seems to be here to stay (along with tendinitis, mild asthma, peripheral neuropathy and the inevitable underactive thyroid).

    To summarise, the answer to your question is yes! Welcome to the club!

    • Posted

      Thank you, Lily, that's so informative.  I've sent you a private message.

  • Posted

    I just wanted to give you a couple of pointers on treating your dry eyes. Seeing an ophthalmologist is a good idea because they will probably put plugs in your tear ducts in order to help with the dry eyes. It helps some people and it's really painless to have done. And only takes of matter of a few seconds. Another thing you can do to help your dry eyes is to use a warm compress across your eyes several times a day. Doing so helps to thin out the oils that coat your eyes so that they can coat your eyes better. Blast Lane don't be disappointed if you have a blood test and it comes back negative. That's not uncommon and it doesn't mean that you don't have SS. There is also a lip biopsy that they can do to help diagnose SS also. I personally opted not to get the lip biopsy. But my rheumatologist is treating my symptoms anyway. Which is really what it boils down to.

    • Posted

      Thank you very much for your reply and your tips.   Yes, I'm definitely going to ask to be referred, so I'll see what happens.

      Best wishes.

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