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Does early diagnose of Sjogren help?

Posted , 7 users are following.

sarahdew
sarahdew

I have a salivary gland infection and the radiologist suspects onset of Sjogren. My GP does not go with this hypothesis and will first send me to a stomatologist (appointment in 3 weeks). My question is, when it is Sjorgen, does it matter for the development of the disease to have an early diagnose, or will it not make a difference if I only get this conclusion later. In other words, is there a sense of urgency with this illness to start treatment to diminish the development or not?

1 like, 10 replies

10 Replies

  • zeet
    zeet sarahdew

    Posted

    Hi Saradew

    I cannot think of a reason why you should be seeing a stomatologist unless it is to exclude anything "sinister". Sjogren's is usually diagnosed by having a full blood screen to see whether you have a raised ESR, a high ANA titre together with positive anti-ro/anti-la. I have had SS since 1992 and have not yet had to take any medication to date. What I did have done was to have my tear ducts plugged with sillicone, which has worked well.That procedure was painless.

    I hope this helps you.

    • sarahdew
      sarahdew zeet

      Posted

      The stomatologist is indeed to find an alternative explanation for my gland infection. I understand my home doctor does not follow the radiologist because there is no history of auto-immune disease in the family. I am only worried that when it does turn out to be Sjogren, maybe there was something we could have done this first month to revert the onset, or decrease the damage to my gland. 
    • aitarg35939
      aitarg35939 sarahdew

      Posted

      I agree with Jennifer that 3 weeks probably won't matter, and that many of us go a long time without any treatment. Others in the plaquenil camp often feel differently simply regarding whether it's okay to go years-to-decades without any treatment.

      Your doc is wrong: you can have any AI syndrome WITHOUT any prior diagnosed familial history.

      All that said, if you're having problems with salivary glands it is important that you start treating your mouth/teeth as if you have SS. This means flossing, and it means using dry mouth toothpastes & mouthwash, and using them correctly. If you want to know more on that, PM me.

      You'll also want to be sipping water all day. If you're in the States, a good filtration system for drinking water is helpful.

      Ditto if you have dry eyes: start lubricating.

      Many many docs know zip about AS and your gp may be one of those.

    • aitarg35939
      aitarg35939

      Posted

      Oops! Last sentence should say "zip about SS."

  • jennifer09136
    jennifer09136 sarahdew

    Posted

    I cant comment on the choice of specialist but i doubt that a delay of 3 weeks will make any difference long term. Many people take years for a definite diagnosis. If the salivary gland infection is your 1st symptom then your getting  an early diagnosis anyway, so dont worry.
  • Zee5252
    Zee5252 sarahdew

    Posted

    Sarah, 

    It all depends on how long who have gone undiagnosed. In my case it took more than 10 years for diagnosis and as a result it impacted both my kidneys and now I am on transplant list and starting dialysis this month. 

    Not trying to scare you mine is one of the rare cases but it does happen, so don't delay it more than few weeks, if possible. 

    Hope it helps!

  • ihavenonickname
    ihavenonickname sarahdew

    Posted

    If the thought is secondary Sjogren's, you would already be on medication for the primary illness.

    If the thought is primary Sjogren's, diagnosis is more urgent because you are not being treated for another autoimmune disease.

    Oral care is imperative...including every six month dental check up...loss of salvia rots teeth...drink lots of water every day

    Visual care is important because your cornea can dry and cause blindness. .my lower tear ducts have been surgically occluded and I use Restatis

    Primary is typically worse than secondary.

    Either way, Sjogren's is a systemic illness...Sjogren's is capable of damage to every body system.

    Being capable does not mean it will.

    Be vigilant of your body.

    A rheumatologist can treat you with immunosuppressive therapy.

    kind regards

    judith

    • jennifer09136
      jennifer09136 ihavenonickname

      Posted

      Can you please tell me about the surgical occlusion - what was it like having it done and what have been the results? Do you notice a distinct difference as a result? My opthalmologist receommends this but I am unsure of guarateed benefits.
    • kris11713
      kris11713 ihavenonickname

      Posted

      Everyboday, Sjorgren's, is the sjorgren's antibody blood test definitive of secondary sjorgren's?   Lab results not in yet.  but I have pain/swelling in my throat, cannot clear throat, troublee swallowing, and extreme fatigue for more than a year now.  been to all kinds of doctors, all of whom pass me on to another doctor.

    • zeet
      zeet kris11713

      Posted

      Hi Kris

      The Sjogren's ANA test is only one of the barrage of test that are needed to definitively say that it is SS. First of all the ANA titre must be high (mine is 1:5120), a raised ESR, positive anti-ro and anti-la, positive Schirmer test and a slit lamp test in conjunction with the Rose-Bengal dye test. Red, dry eyes and a dry throat is added into the mix.

      And that's only the start.........

      Good luck

      Michael

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