What is Primary Sjogren's Syndrome

The symptoms of Sjögren’s Syndrome vary greatly between individuals.
Symptoms include a dryness of the moist areas of the body, like the mouth, eyes, ears, nose and vagina. Fatigue and depression, plus painful joints, are also associated with the disease.

When organs other than the lacrimal and salivary glands are affected, this is known as “extraglandular involvement.” Usually, this occurs in patients with primary Sjögren’s syndrome (see “Primary Versus Secondary Sjögren’s Syndrome”). 

Manifestations of Primary Sjögren’s Syndrome include :
  • joint inflammation
  • particular forms of autoimmune thyroid, kidney, liver, lung, and skin disease
  • changes in nerve function of the upper or lower limbs
  • small proportion of patients may progress to a form of lymphoma
Do you know if you have Primary or Secondary Sjögren’s Syndrome?
Did your specialist define this?

RESOURCE:  National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)


  1. I was told mine is primary. My SSA and SSB were both off the chart high.

    1. Did they suspect Sjogren's Syndrome before they tested?

  2. I was not told. I have fibromyalgia, secondary adrenal issues, Sjogren's, and Celiac. A history of Graves' disease. This is one of many things, but Sjogren's is tough. I did have a lot of joint pain in upper and lower, all over actually. The thing is my conditions can all cause that type of symptomology.

    1. yes I was not told when I was first diagnosed whether it was Primary or Secondary. I like you don't really know what symptoms are from which of my diseases often. That's why I just decided to try and treat the inflammation.

  3. I had a kidney biopsy that confirmed the diagnosis of primary sjogrens. Everyday is tough, as I am constantly in pain and severly tired, the joint inflamation is only now starting. Amazing how different we are diagnosed, but our stories are so much the same.

    1. Wow, never heard of that form of diagnosis for SS. sorry to hear about your pain. What are you trying for that?

  4. Mine was diagnosed at age 50 through blood work and lung biopsy (interstitial pulmonary fibrosis). However, after 14 years of treatment/medication, the IPF has been in remission for the past 4 years. I do still have other Sjogren's symptoms including dry eye & mouth, ongoing joint pain, extreme fatigue, etc.


  5. I was diagnosed at the age of 2, very uncommon, and I am now 24. The past couple years I have been developing more problems and discovering different symptoms connected with my SS. Last year I had a lung biopsy and am now taking an inhaler as needed. I started seeing my Rheumatoid specialist at the age of 14 and it was discovered that I had rheumatoid fluid in all my joints. The fluid has decreased but pain is reoccurring. The most common symptoms I have are: chronic arthritic pain as well as inflammation in my periodic/salivary glands. I have changed my diet and am now trying to be gluten free. Gluten causes inflammation, which SS can tend to be associated with. I have only been gluten free for a few months, however, I do see a difference in how I feel overall.

    I am glad I discovered this blog. I find it interesting to reading other's experience with SS since I've never met anyone else with this disorder considering it is very rareat my age.



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