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Question about Sjogren's

Posted , 9 users are following.

AndreaB1967
AndreaB1967

hello everyone  and thanks for reading.  I have a question about Sjogren's.  I have had dry eys for about 2 year now (I also had lasik in 2005).  Within the last 4 months my have have gotten really dry.  I have all 4 tear ducts plugged and I am on Restasis.  I also use sclera lenses (more for vision  but also helps the dry eye).  My ete dr said he thinks I may have Sjogren's  even though I have never has a Schirmers test (I am not sure how accurate that would be since i have had lasik anyway).   tested positive for ANA 1:80 titer with hemogeous pattern but negative for RF and SSa and SSb.  Should I pursue this further?  Dry eyes are the only symptom I have.  Thanks Andrea B

0 likes, 40 replies

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  • shira75032
    shira75032 AndreaB1967

    Posted

    Hi Andrea and welcome to the forum. If dry eyes are your only symptom you're in good company as many people suffer from that regardless of Sjogren's.

    You're already getting the correct treatment for your eyes so I don't think an actual diagnosis would help you any at this point unless you develop additional symptoms.

    • AndreaB1967
      AndreaB1967 shira75032

      Posted

      Thank you shira75032   yes  luckily  that is my only symptom.  sometimes my mouth is a bit dry in the morning (I think I may someitmes sleep with it opne) and I do take a sleeping pill on some nights.  But other that that  nothing at all.  I thought about getting a lip biopsy but I think I will hold off to see if anything developes.  But man my eyes are dry LOL.  About 6 months after starting restasis but eye would flood tears but not anymore (another reason the eye dr suspected Sjorgen's) and the fact I am 48 and in meopause.  Could that be a connection ??
    • lily65668
      lily65668 AndreaB1967

      Posted

      Hi Andrea, Sjogren's in women often starts after the menopause, but then so do dry eyes - with or without SS. But as Shira said, there's not really much point in getting an official diagnosis, as there's no actual treatment for Sjogren's anyway. They can only treat the symptoms.

      That being said, my diagnosis was made on the basis of finding anti-salivary glands antibiodies in my blood. But only after I'd been getting a whole range of symptoms for ten years. Apart for the test for dry eyes, some people have a lip biopsy, but I've never fancied that one - it seems it's quite painful and there's a slight risk they'll damage a nerve.

    • shira75032
      shira75032 AndreaB1967

      Posted

      From what I understand none of the autoimmune medications they could prescribe you helps much with the eyes anyway. Yes, from what I've read menopause can make dry eyes even worse as well as dryness in general.

      You may want to read up on DHEA supplement therapy which has helped some women in your situation with Sjogren symptoms.

    • AndreaB1967
      AndreaB1967 lily65668

      Posted

      Thank you lily65668   yes you are right  the only thing is to treat the symptoms.  And I know how I am  i would worry so much I would probably throw myself into my crazy symptoms.  Oh also my Dr said my positine ana could be from my hashimoto thyroiditis  so I guess that is what that could be.  I already have heart disease (4 heart surgies).  I just hope this does not progress.  i do not think I can even take that Plaq medicine.
    • AndreaB1967
      AndreaB1967

      Posted

      awe thanks  well i use to be able to wear makeup on my eyes but not anymore sad
    • tracy79802
      tracy79802 lily65668

      Posted

      I agree with lily that there's no treatment for sjogren's. But think it may be a helpful to get diagnosed as a process of elimination. Sometimes it helps just to have a name and to figure out if it's not something else. 

       

       

  • pam_87693
    pam_87693 AndreaB1967

    Posted

    I would certainly would pursue it. There are loads who are Seronegative especially if your family history goes down the Psoriasis line. The titre isn't high but I wouldn't worry to much. 
    • AndreaB1967
      AndreaB1967 pam_87693

      Posted

      Thank you pam 87693  no  I have not history of that is my family.  I think i will wait to see if my symptoms progress and go from there.  i see my eye dr this weekend  so i will see what he says about my eyes.  that have actually improved some.  At least my eyelids are not sticking to my eyeballs anymore LOL
    • pam_87693
      pam_87693 AndreaB1967

      Posted

      Well they don't have to! The real problem with Sjögren's is it a connective tissue disease, it might affect variou parts of the body in very different ways! I if I had realised it at 21 would have been diagnosed then as Henrik Sjögren the Sweedish Opthalmiogist was still alive! I'm 68 now and my lids have never stuck to my eyes ever. I am however totally dry eyed and at 21 my Schirmer was 2.3mm, my mouth was dry and so was my vagina. Yet normally women don't get Sjögren's until the menopause. Prevention is better than cure, so if I were you I would suggest you see an optician and let him check how dry they are. 
  • lily65668
    lily65668 AndreaB1967

    Posted

    Hi Andrea, I should say that I don't normally have major problems with dry eyes. In my case this can normally be controlled with drops. However, all my symptoms seem to come and go periodically - which is normal for auto-immune conditions - and I did go through a bad time with dry eyes a few months back. At about the same time, I'd happened to be reading up on sea buckthorn oil, which is supposed to be good for dry eyes. I've been taking it for two-and-a-half months now, and can report that my eyes are quite a bit better. However, I've no way of knowing whether this is down to the oil or would have happened anyway in the normal run of things!

    I know Shira has also been trying it out too, but started after me. (And they say you have to take it for at least three months to get any real benefit.) Any news, Shira?

    • shira75032
      shira75032 lily65668

      Posted

      It's only been a couple of weeks for me on the sea buckthorn. So far the results are inconclusive, though I do seem to have a bit more moisture than before in my eyes. I scored 0mm on the Shirmer's test, so any moisture is welcome!
    • AndreaB1967
      AndreaB1967 lily65668

      Posted

      lily65668  I have heard of sea buckthorn oil but not sure where to buy it ?  Does it come in pill form ??  I take Theratears nutrition  which is fish and flax seed oil.  where can I guy this ??  I would love to try it...  AndreaB
    • lily65668
      lily65668 AndreaB1967

      Posted

      Hi Andrea, don't know where you are in the world, but I get mine at H&B (own brand, about £20 for 60 caps) on my regular trips to the UK. However, Shira, who can't get it in-store where she lives, told me she'd managed to source it on-line. I prefer H&B's own brand as it doesn't have any added vitamins, apart from all the vitamins naturally contained in the oil, and is cheaper. However, a lot of the big on-line companies are doing it now as well.

      It comes in small, easy-to-swallow capsules. You take four a day for the first four weeks to build up levels in your blood (though I worked up slowly to that level as I once had a bad experience with a supplement) then fall back to a maintenance dose of two a day.

      Like I said, it does seem to have improved my eyes a bit, and initially it seemed to be helping a lot with my current RA crisis (another of the effects claimed for it). However, I messed up on the latter by starting to take a new, powerful pre- and probiotic product on doctor's orders a month or so after starting sea buckthorn. This didn't suit me at all, caused complete exhaustion, constipation, a terrible flare-up of RA and polymyalgia, and even mental problems (confusion, dark thoughts etc.) The exhaustion and brain-fog have now cleared since I stopped the probiotic, but I'm still coping with the rest.

      Incidentally, another claim for sea buckthorn oil is that it's very good for your skin. I have to say I can't see any difference myself, but on the way to the office last week I met a young colleague, just returning after six months' maternity leave. She did a kind of double-take in the street, said: "Is that really you? You look much younger than when I last saw you!" Don't know whether it's true but it was very gratifying. I shall definitely "keep taking the tablets"!

    • AndreaB1967
      AndreaB1967 lily65668

      Posted

      Lily   I am in the US. Kentucky actually  smile    well I am definitiely going to ask my eye dr Saturday when I see him.  I think you can get this on line at Amazon.  If it makes me look younger  I am for sure going to try it.  I use to look pretty young for my age  but since all started I feel like I have aged.  Plus the fact I do warm compresses  it is not good for the skin around your eyes LOL.  I guess I am pretty lucky I have nmot other symptom to this point.  I am a worry wart  so maybe it is best I not know for sure and just treat something if it comes up.... smile
    • lily65668
      lily65668 AndreaB1967

      Posted

      Your doctor may not have heard of this as it's fairly new on the market. And in any case, most mainstream doctors only want to prescribe stuff produced by Big Pharma. My doctor is actually very open to alternative solutions - he prodded me into taking the disastrous probiotic because he's into "leaky gut" theory - but he'd never heard of sea buckthorn. I didn't know how to translate it into local language - too new to appear in dictionaries! - so I had to describe its appearance and where it grows. He's going to research it, as he understands written English, like doctors all over the world. I'll be interested to hear his verdict.

      One thing is for sure though: I haven't had any unpleasant effects from sea buckthorn oil, only good ones. The flare-up and other symptoms were clearly down to the probiotic because of the timing (and I also researched this and found that probiotics can cause nasty side-effects). Most of the side-effects subsided within two weeks of stopping the probiotic. The RA and polymyalgia flare-ups are still going strong, but that's only to be expected as both these conditions are quick to appear but slow to subside.

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