What is Primary Sjogren's Syndrome

Primary Sjogren's Syndrome

Primary Sjögren’s Syndrome is a diagnosis given when the person has no other autoimmune disease.

This is not exactly true though as I was told I had Primary Sjogren's even though I had an autoimmune thyroid disease.  Apparently autoimmune thyroid diseases are so prevalent in people with SS that they have been taken out of the equation. 

When Henrik Sjögren, the Swedish ophthalmologist, presented his thesis on Sjögren's in 1933, there was no such thing as Primary and Secondary there was just the name Sjögren's syndrome.  He wrote about 19 female patients with lacrimal dysfunction and dryness as keratoconjunctivitis sicca, meaning "inflammation of the cornea and conjunctiva" 13 of whom had arthritis. 

The symptoms of Sjögren’s Syndrome vary greatly between individuals and 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 for you?

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.


    1. BeckyJo, thanks so much for posting your info here. Every little bit helps get the word out about Sjogren's Syndrome in all it's manifestations. Glad to hear at least the IPF is in remission and hope this is still the case. Keep us updated either here or on our facebook page please.

  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.


    1. Whoa! Sarah diagnosed at age 2 - never heard of this before. Sorry to hear about so much pain... Please leave an update either here or on facebook and let us know how you are going as we are all very interested

  6. Hola! I was diagnosed 4 years ago with primary sjorgen at age 17. Im mexican and i have never known someone with the same syndrome as I am. I would like to share my experience and have somene to talk to about the way I deal with my health and listen to new ways to take care of my synthoms

  7. I have SS since 15th.. so, in 2016 - it would be my 9th year with SS.. it attacks my internal organs - livers, kidneys and stomach (gastric based on google translate).

    Joints pain is a must-have-pains for SS patients.. I have them, and it is very difficult to sleep evry night.. adding Brain Fog - which mke me forget there and there most of the time and dry eyes and mouth are also included..

    I am very sensitive with foods.. herbals, certains fruits or/and foods and preservatives ingredients (MSG, colouring, etc) are completely OUT! I eat those in tiny doses, will cause me massive pain.. so, Ive been eating super healthy meals every since.. try to experiment by neglecting those rules, ended up at Emergency Room..

    But Ive got no problem with gluten so far.. Ive tried not to consume gluten, yet my joints r still in pain.. so - no effect on me in conclusion..

    For dry eyes, I do depend on eye drops.. although recently, now it becomes slightly worst.. I started to see white rather than actually seeing - gonna see doctor next week for my eyes..

    Hmmm... my hearing also detoriate.. my left is worst than my right..

    But in all of those sharing.. I just need to mention one thing - you have to laugh it out.. dont be beaten down by those things.. just laugh and enjoy life as much as you could.. (^.^) I do even celebrate my SS every year for fun.. I treat SS as a person living inside my body.. Ive got to Birthday dates each year.. hahahaha...

    I should find this blog sooner.. I hv couple friends I met at hospital.. although not all of them are SS, but they are still autoimmune disease.. everyday is tough day for us (me, you and all patients)..

    Being together, knowing we are not alone - is a nice thing..

    Im in Indonesia.. (you probably hear my country from news of burning forest - I despise those people as well.. there is no rains drop ever since.. it is driving people mad..)

  8. So it is important to know about the symptoms and possible herbal treatment options, such as extra Natural Herbs for Sjogren’s Syndrome, such as rheum rhabarbarum, ginger, vitamin E, and others.


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