What is the difference between Primary Sjogrens versus Secondary Sjogrens?

[JakeL]

I was looking on the web for more infomration about Sjogrens and then when I was looking through this site called HealthTap I saw that there was question about Primary vs Secondary Sjogrens . I posted the link to the question if people want to see the answers they gave (http://bit.ly/KC5CtT), but I am still confused on what the difference is between the two? More importantly I did not even know there were two different Sjogrens . Did other people know about this? Also, should I be concerned and ask my doctor which one I have? What are the main differences and how do I need to approach treating each one?
Thank you for all of your help.

[MissyLouWho?]

What I understood from my doc was the second Dr.'s explanation that Primary is a stand-alone autoimmune disease, while secondary is where another autoimmune disease is more prevalent.  I have both Sjogren's and systemic lupus. But my lupus is primary because I have low platelets.  A distinguishing thing about platelets for both is to have low with lupus, and high with Sjogren's.  That's why my rheumy said primary lupus, secondary Sjogren's for me. 

Since AI diseases tend to overlap, I think it's the differences that make the actual diagnosis.  They all (or at least most I think) have fatigue, brain fog, positive ana and joint pain.  But it's the differing symptoms that determine what it is specifically.  I hope I explained this right and didn't confuse you more!

[Gayle]

Thanks Missylou!

[amberjolie1]

Hi Jake,

From the various internet sites I've been to, I also understand it the way MissyLou does - Primary Sjogren's has no other autoimmune diseases associated with it, while Secondary does.  I have scleroderma and secondary sjogren's (although my original rheumatologist thought it was primary sjogren's for awhile, until I recently had a positive skin biopsy for scleroderma).

I don't think it matters which it is in terms of treatment.  One thing I had read is that in Primary Sjogren's, the symptoms of Sjogren's tend to be more severe than Secondary, but of course with Secondary, the person also has to deal with the symptoms of another auto-immune disease, which can be severe in itself.  So either way, a person could potentially be dealing with difficult symptoms (unless they are fortunate to have a mild case).

Essentially however it's the same disease/disorder/condition (whatever you like to call it), and would be treated the same way.

You may want to ask your doctor anyways, though, if you have any suspicion there's another AI disease lurking around.

[eyeamdry]

Per my rheumy (and she is good), I was dx with Primary Sjogrens in 2007.  We started treatment with Plaquenil and MTX.  She told me I had "primary sjogrens."  About three years after that, she did a diagnosis of Fibromyalgia too. 

I wondered later if that meant that my Sjogrens was secondary because now I had a secondary autoimmune disease.  I'd like to add that my SJS symptoms are definitive and I have positive bloodwork.   I asked my rheumy now that I had fibro in the mix was my SJS still primary or secondary.  She said it was still primary.  It really doesn't matter to me and I am satisfied with that, but I was curious how she would answer that.  This must happen a lot where Sjogrens is diagnosed and then other SI added to it. Probably like our disease and no simple answer.  Thankfully, I'm not caring into what is #1 and #2.  Lucy

[DragonflyC]

As a slight clarification, SJS is only secondary if there's another connective tissue disease (e.g., SLE, RA, Scleroderma). For example, I had Hashimoto's first, which is also an autoimmune disease, but when I developed SJS, it was considered primary because Hashi's is not a connective tissue disease. Later, my rheum decided I had an SLE overlap, which means my Sjogren's is not really primary or secondary, but kind of merged with lupus.

Primary Sjogren's tends to be more severe than Secondary, but with Secondary the other illness is often more challenging. As far as I can tell, that means that people in both categories can face significant impact to their quality of life.