Sjorgrens

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Has anyone had problems with the Kidneys or Lungs since being diagnosed with Primary Sjorgrens?

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  • Posted

    No..just the eyes, mouth and the fluid in my left ear crystallised 11 years ago..leaving me with 24/7 dizzyness and inbalance...also my chiropractor says my feet are very dry from it too...I've had it 23 years...have a lovely day Mandy..be blessed :-) xxx
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  • Posted

    Hi Mandy ~

    I was dx'd with Sjogrens in 2012 but I also have sarcoidosis and because of the two, I have my lungs, brain and kidneys checked every 6 mths.  So far so good.  However, my eyes are terrible, how are yours doing?

    Well wishes,

    Frustrated

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    • Posted

      I have had the punctual plugs put in my lower tear ducts, they helped when I was 29 until they fell out last year aged 54.  I have since had new ones put in but my eyes are really dry now so still putting in drops at least 3 times a day.  Eyes are really sensitive to the sun as well, so just ordered some new sunglasses.  My skin itches like mad if I got out in the sun.  
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  • Posted

    I have been diagnosed with Sjorgens and am having problems with my lungs but I cant find a consultant to find out if there is a link and if so, what I need to do about it. I have read medical reports on the internet about the effects of Sjorgrens on lungs but cant really understand most of them. Do you have any ideas where I could find such a Consultant?
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    • Posted

      Hi jeannie,

      i am under Addenbrookes hospital, and I was given steroids for my chest, it has finally settled down, but I too am concerned about what problems Sjorgrens causes with the Lungs and kidneys.  I am having a CT Scan tomorrow on my Kidneys.  I also read that we can be prone to lymphoma. What problems are you having with your Lungs?

      regards,

      mandy

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  • Posted

    hello mandy, what happens for me is that when I have a period of a very dry mouth and throat, and burnt mouth syndrome going on, I can have quite violent coughing episodes. I lose control of my bladder, vomit and have to fight for breathe. After these coughs I cant seem to fully inflate my lungs and I am breathless for days and weeks at a time. My GP gave me a weeks supply of steroids but they had absolutely no effect. I have read, on the internet, that the small airways in the lungs can be challenged by Sjorgrens and that lungs can also become scarred and severally damaged. I simply can not find a Consultant who knows about this aspect of Sjogrens and that is why I have joined this web site in the hopes that one of you might be able to give me a lead. Best wishes with your scan tomorrow and hope that nothing scarey comes from it.
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  • Posted

    Hi Mandy, I have had sjogrens for 30 years now I do find that as I get older I get very tired, I to have digestive problems, have have a dry cough which seems to go to my right lung, but have been told there is no cure for sjogrens, so we just have to grin and bear it, best wishes to you.
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