Question about Sjogren's
Posted , 9 users are following.
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
shira75032 AndreaB1967
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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 shira75032
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lily65668 AndreaB1967
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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 AndreaB1967
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You may want to read up on DHEA supplement therapy which has helped some women in your situation with Sjogren symptoms.
AndreaB1967 lily65668
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jefferson89822 AndreaB1967
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AndreaB1967
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tracy79802 lily65668
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pam_87693 AndreaB1967
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AndreaB1967 pam_87693
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pam_87693 AndreaB1967
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lily65668 AndreaB1967
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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 lily65668
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AndreaB1967 lily65668
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lily65668 AndreaB1967
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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 lily65668
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lily65668 AndreaB1967
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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.