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Have been told they think I probably have Sjogrens but blood test not conclusive!

Posted , 8 users are following.

amanda81171
amanda81171

I suffer really badly from dry eyes and been told to have puncual plugs, do they work?  I now also have very dry lips inside and out and constantly using lip salve and sucking chewing gum, any other suggestions? Does anybody else have leg cramps associated with this? D

Also does anybody suffer insomnia too?  Sorry lots of questions but new to this and not sure what symptoms to expect or just nothing to do with Sjogrens. Thanks

0 likes, 20 replies

20 Replies

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  • mandy95
    mandy95 amanda81171

    Posted

    Hi Amanda,

    Yes the plugs do help. I had my 1st set put in when I was 29. Then last year my eyes started to play up again at age 55. Went and had my eyes checked and plugs had come out. Since had them replaced again. I personally would no be without them.

    Mandy x

    • amanda81171
      amanda81171 mandy95

      Posted

      Hi  That was quick.  I didnt realise they lasted so long and sounds like they definitely helped so will have a go I think as really affecting my eyesight nothing is clearly defined even with new glasses! Thanks
  • shira75032
    shira75032 amanda81171

    Posted

    I also suffer from insomnia though I'm not positive it's related to the SS.

    As far as punctual plugs, I was also offered them but decided against it since from what I've read if you have inflammation issues as well that affect your eyes (as I and many SS sufferers do) it can make matters worse as the toxic tears just remain in contact with your eyes longer. Additionally, I've read the plugs make dry throat and nose matters worse as well as the tears can't drain to those areas.  

    9

  • suncat
    suncat amanda81171

    Posted

    i take half valium   i suffer so much with my dry mouth...So sllep ineed  i want salivaa pills  are theyok??????
  • celia0407
    celia0407 amanda81171

    Posted

    Hi - I'm being tested for sjogrens also. I have very, very dry mouth, sore lips & my lips split on each side sometimes. Also my tongue hurts quite often & other places inside of my mouth. My eyes are only a little dry, but my vision has changed & I have appt. to see about them. My doctor prescribed Cevimeline for my dry mouth & it helps (take 3 daily). I also use Biotene toothpaste, mouthwash, gel & spray. Act also has these. This helps also.

    RVlady45

    • amanda81171
      amanda81171 celia0407

      Posted

      Thank you that is really helpful.  I am seeing the Dr shortly so will ask about it and look out for the toothpaste. My vision is not good at all and awaiting appt for consultant re the plugs.  Is your vision blurry nothing is clearly defined most of the time even with glasses.?  Does it at times make you feel sort of lightheaded by any chance too?
    • shira75032
      shira75032 amanda81171

      Posted

      Amanda- dry eyes can cause blurry vision from what the eye docs told me. I have this as well. Good luck with the plugs, let us know if they help.
  • suncat
    suncat amanda81171

    Posted

    cant release mucous panick dy mouth please helpxxxxx
    • celia0407
      celia0407 suncat

      Posted

      Have you been diagnosed with Sjogrens? If so, how were you diagnosed?

      The Rheumatologist I see is not all he should be. He's only taken blood work. I have very, very dry mouth & tongue burns so I use the Biotene products & it helps. I also rinse with Nystatin. The only helpful thing this doctor has done for me is putting me on Cevimeline to help me with  saliva - it helps a little. Hope you get help.

      Celia

    • mandy95
      mandy95 celia0407

      Posted

      Hi Celia,

      My was done by a blood test only.

      Regards,

      Mandy

    • suncat
      suncat celia0407

      Posted

      Thank uou AMand  what is cemimeline?Is itfor saliva  are  are ther any side affects????It helps ????The diagnosis is blood tests i need more  i sdont trust the first ones 2 month ago and i have gotten worse..I do not understand why it takes sometimes 2 years for positive results.. I looked up. My throat is not good with mucous and dryness....The biotene I use all products and seem  it does not work all the time.. Can you advise me how to gain weight lost 12 lbs and im thin//////////Do you eat meat??or sweet potatoes? I was eating a lot of mayonaise in fish.   maybe mucous????  thnk you my friend

       

    • shaq26875
      shaq26875 celia0407

      Posted

      Hi Celia

      ​does Sjogren also give a burning tongue? I tested positive for sjogrens ..was on Plaquenil and after 6 weeks my nose wouldnt stop running and I had excess saliva (would spit it out as swallowing made my reflux bad)...so I stopped the Plaq....however my burning tongue ( 24/7) never goes away..the Rheum didnt tell me this was due to sjogren's...neither did the ENT or the gastroenterlogist I have been seeing since April... The Rheum had muttered previously something about nerves being affected and needing more blood tests...Do the Biotene  products get rid of the burning tongue totally? 

    • celia0407
      celia0407 shaq26875

      Posted

      Not totally with just the Biotene, I also swish with Nystatin (this is a script & works well). Also - my mouth is so dry my Rheum has me on Cevimeline to help me have more saliva & it helps some. This is a script of tabs.

      How were you tested positive for Sjogrens & how long did it take to get a diagnosis? Did they do a bottom lip biopsy? Thanks for responding to my post. Celia

    • celia0407
      celia0407 suncat

      Posted

      I'm sorry suncat - the only way I know to gain weight is eating & drinking things with a lot of calories! Yes, I eat chicken, beef steak, pork & fish. Yes, I also eat sweet potatoes & baked potatoes. I'm thin also because I have chronic diarrhea from losing my ileum when I had 2 emergency colon resections in 2007 & almost died. I use the prescription of Questran (it's a powder you mix into something to eat, but I still have a lot of diarrhea.)  My weight goes back & forth every day - depending on how many bouts of diarrhea I have each day. I'm at 107 lbs. right now - but have been down to 100 lbs.

      The Cevimeline is a script - it's tabs - I take 3 a day.

       

    • shaq26875
      shaq26875 celia0407

      Posted

      I was getting swollen wrists,knuckles , and also1 of my elbows...got reffered to a rheum who said ..only reactive arthritis and gave me Arcoxia...when i developed skin lesions he said only mild reaction...i stopped med but the lesions spread..(later dignosed as Pityriasis Rosea)..i was also seeing a pulmonologist on a different matter who on seeing my skin reffered to another rheum ,who at my 1st consultation said I had Sjogren's...blood tests confirmed..he also wanted a lip biopsy but I chickened out and after 6 weeks my saliva was back to normal anyway,so i stopped the Plaq.Now left with burning tongue and desperately trying to find something to get rid of it..I will try the Biotene and Nystatin...thanks
    • shira75032
      shira75032 shaq26875

      Posted

      Why do so many of us seem to suffer from burning tongue?

      How is this related to the Sjogren's?

    • mandy95
      mandy95 shira75032

      Posted

      Hi Shirs,

      My tongue is always burning, and if I use mouth wash even though it is alcohol free it still burns. I use the biotene mouth rinse.

      Regards

      Mandy

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