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Sjogrens Syndrome

  • 12-12-2008 2:16pm
    #1
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭


    Anybody out there suffer form the above. I was diagnosed 5 years ago. I am male but apparantly 90% of sufferers are female. Symptoms are Dry Eye, Dry Mouth and Rheumatoid Arthritis. currently on meds which are working for the RA but suffering form Dry Mouth - no saliva and also stomach problems. Interested to hear of anyone else who suffers


Comments

  • #2
    VexedRed
    Closed Accounts Posts: 23 ✭VexedRed


    Hi!
    Your post was a very long time ago but...

    I have it too-was originally diagnosed with SLE about 10 years ago but more recently (in the last 3/4 years) my symptoms have erred more on the side of Sjogren's. As it's all immune system related I have touches of other things aswell-like Raynaud's phenomenon in the Winter. It's all fun and games when the immune system is involved!

    I am on Paquenil for the dry eyes and mouth-it's actually an anti-malarial but it does the trick! On steroids and immunosuppresants too as my Sjogren's and cruddy immune system is attacking my kidneys too so they are trying to fail on me (even though they are my own kidneys!).
    On some calcichew tablets to stave off the bone damage-but I think that's mainly cos i'm on a high dose of steroids at the mo. No sign of RA yet!

    I get severe vasculitus too which is not so nice-it is normally only on my feet and legs but sometimes it goes so far as my stomach, back and arms. It's a bit of a pain as it means you have to cover up a lot of the time-and being a lady sometimes it would be nice to wear a dress every now and again...

    I have never met a man with Sjogren's but have met a few other females with it-generally they are a lot older than me though-i'm only 23. It seems to be getting a lot more common or something... or maybe it's just easier to diagnose now.


  • #3
    treecreeper
    Registered Users Posts: 193 ✭✭treecreeper


    i am interested to hear of people in wicklow with sjogrens syndrome or lupus spectrum autoimmune diseases...i am not well at all right now.


  • #4
    lola1
    Registered Users Posts: 70 ✭✭lola1


    Sorry for the very late reply - I've only just seen this thread. I suffer from RA and Sjogrens. I go to a rheumatologist in Tallaght Hospital but he doesn't have a huge interest in the Sjogrens angle. I go to an eye specialist who is interested in the dry eyes. I think I have tried every product that is on the market for dry mouth and I keep coming back to Xylimelts. They are lozenges which are inserted into the mouth and they stick to the gums. I find that they are the only product that gives me any bit of relief. They're available on eBay. For what it's worth, I only suffer from this at night - during the day I am fine. But it's a pain at night - I waken up sometimes having sucked my gums and the insides of my mouth dry, thus causing sores on the inside of my mouth. Life's a bitch!!


  • #5
    matt007
    Registered Users Posts: 39 ✭matt007


    Base of tongue cancer survivor here.

    My Salivary Glands were well trashed during treatment leaving me with
    24 hour dry mouth..
    I have been prescribed bio-gel etc.. Which works, but doesn't last at all (one drink and its gone really)
    and considering I can drink 4+ litres of water a day...
    Xylimelts are the only practical option for me and I am a little non plussed that they aren't available in Ireland,
    let alone given on prescription. I'd have them in 24/7 if it wasn't for the cost.
    I used to buy them from the UK pre brexit, but alas got charged a whopping 30 odd euro on taxes and shipping for
    a 70e order..
    I now use Somnishop.com in Germany who offer free shipping and they get here in a week.
    67e for 200.


  • #6
    markmoto
    Registered Users Posts: 788 ✭✭✭markmoto


    Unregistered wrote: »
    Anybody out there suffer form the above. I was diagnosed 5 years ago. I am male but apparantly 90% of sufferers are female. Symptoms are Dry Eye, Dry Mouth and Rheumatoid Arthritis. currently on meds which are working for the RA but suffering form Dry Mouth - no saliva and also stomach problems. Interested to hear of anyone else who suffers


    Did you change your diet since being diagnosed?


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  • #7
    lola1
    Registered Users Posts: 70 ✭✭lola1


    Me too! My meds are controlling the RA but over the past 6-9 months Sjogrens has completely lost the run of itself. Dry painful eyes and dry painful mouth is the worst of my symptoms but I think that my vision has deteriorated too. My rheumatologist is simply not interested. Looking for a second opinion at the moment.



  • #8
    Mam1996
    Registered Users Posts: 63 ✭✭Mam1996


    Me too! Official diagnosis in May 2020 following liver inflammation with unknown cause. I have many issues with it, joint and muscle pain, small fibre neuropathy, eye and mouth issues, liver fibrosis, heart arrhythmia, stomach issues, interstitial cystitis and debilitating fatigue. My rheumatologist told me it's a progressive disease and unfortunately that I just have to accept it, no decent treatment for it at the moment so I currently have a number of different consultants, each taking care of separate issues.

    The only drug I'm taking for actual Sjogren's is plaquenil. I use xylimelts and thealoz eye gel along with various other meds for each associated condition.



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