Lupus like sjorgrens???

[Fairykissez]

So I saw my rhuemy today and I asked him, ok what is it that I am actually dealing with. He said its sjogrens but its lupus like...what the heck does that mean?? I dont understand it one bit. He is taking me down to 15mgs of prednisone now that the pericarditis is getting better, and on Wednesday I am supposed to start the imuran because he dosent want the pericarditis to come back. I am a little nervous about taking it but my labs show some of my kidney functions are off so I guess at this point I have no choice. I was feeling better but my labs show something totally different. My sed rate has always been normal and now its 29.

So is sjogrens a lupus like disease like he says? What do you all think?

[Luna]

My Rhuemy told me I don't have Lupus, but I will feel like I do. My mother has lupus and agreed with my doctor. We do have a lot of the same symptoms.
I hope you start to feel some relief soon

Luna

[Rachel F.]

From what I have read, everyone is different. For some, sjogrens affects many more body functions than for others. Sjogrens can impact many areas of the body, because moisture is involved in many organs. It sounds like your doctor thinks that your issue is that there is more systems involved than "dry mouth, dry eyes". I think you will find support here online.
All the best-- I hope that this information helps. What other questions do you have?
Rachel F.

[genko_b]

As my rheumatologist explained it to me, there are literally dozens of autoimmune diagnoses, including lupus, Sjogren's, RA, Hashimoto's, psoriatic arthritis, CREST, diabetes, sarcoidosis, myositis, multiple sclerosis, colitis, Crohn's and many many more. Diagnoses are labels that doctors give us based on our own combination of symptoms and blood work as well as what medications do or do not work for us.

If you can imagine all the possible autoimmune-related issues and indicators spread out on a table, each of us has gotten a slightly different handful of them scooped up and given to us. For example, most people diagnosed with Sjogren's have dry eyes and mouth, but some do not. Most people diagnosed with Sjogren's have certain characteristic blood work and some do not (sero-negative). In addition to the dry eyes and mouth many people who have Sjogren's will develop other symptoms over time, but some do not.

Many of us who have Sjogren's with central nervous system involvement have been diagnosed as Sjogren's/lupus overlap. Since more and more they are finding CNS involvement with Sjogren's, some doctors simply call it Sjogren's now, and leave off the "lupus overlap" part of the diagnosis. Others may change the diagnosis to lupus depending on a number of factors.

Many of us on this site have a number of AI diagnoses. I have Sjogren's/lupus overlap, autoimmune vestibulopathy, colitis, and RA. Or as my doc says, "autoimmune assault on your system." Many folks here have Hashimoto's or diabetes as well as Sjogren's, along with several others that are common.

In the end, the labels are primarily for convenience in figuring out how to treat our symptoms. All of the autoimmune diseases are on a continuum and the divisions between individual diseases are somewhat arbitrary. The labels are important only to help us find appropriate treatment so we feel better, and hopefully have insurance help pay for it as well.

I don't know if that helps at all or just makes things more confusing.

Take care,

Genko

[mshistory]

There's that list of 11 criteria for meeting a possible Lupus diagnosis, and a person needs to meet at least four of those criteria. I've met five but have only been diagnosed with SjS, so I think I understand what your doctor is saying. I think for some people, SjS can very closely resemble SLE.

[DragonflyC]

When people ask me what Sjogren's is, I usually answer, "It's an autoimmune disease that's a lot like lupus."

The two are VERY closely related.

[Fairykissez]

All this stuff is confusing, I know I have sjogrens I have a positive SSA and dry painful eyes and occational dry mouth and horrible sinus issues. He has my dx as SLE but then refers to it sjogrens. My dna test for sle is negative as well as all other SLE markers are negative. I do have 4 critera for SLE. I just want a straight answer, I know it wont matter treatment wise but I just need an answer.

[LizPetillo]

When people ask me what Sjogren's is, I usually answer, "It's an autoimmune disease that's a lot like lupus."

Same here.

[DragonflyC]

I hear you, but unfortunately, there are no straight answers with AI diseases.

Thinking of it this way has helped me: it's not that we really have one AI disease or another. What we all have is a misfiring, malfunctioning immune system. How it manifests itself (e.g., by attacking the exocrine system with Sjogren's, the thyroid with Hashimoto's, etc.) gives us a name that describes our particular situation. Depending on blood work or symptoms (which can shift over time), that label might change or develop.

It can take years to really get a full picture of what's happening, and that's one of the many frustrations of having an AI disease. Some people will have a clear cut answer right away: "You have Crohn's." While others will get, "You have Sjogren's, but it is lupus-like" (I hear that one at all of my rheum visits) or "It looks like there's some overlap" or "I'm not sure which it is."

Since there are no definitive tests for lupus or Sjogren's, and since they are so similar in their manifestations, we really do have to make peace with the fact that there likely isn't an absolute answer.

In my humble opinion, it does sound like you lean more towards Sjogren's than lupus. Having four criteria for lupus is only enough for diagnosis if there is no other explanation for the symptoms (Sjogren's being a possible explanation in your case). Without blood work pointing towards lupus and with symptoms that point towards Sjogren's, it sounds like that's your diagnosis. You might, however, want to ask your doctor why he has "lupus" as your official diagnosis. It may be that he sees the diseases as being so similar that they are interchangeable to him (my rheum, in fact, thinks of lupus and Sjogren's as one illness along a single spectrum of disease) or it might be something related to your insurance. My personal diagnosis seems to shift between "Primary Sjogren's (that is lupus-like)," "SJS/SLE overlap," and "mild lupus with Secondary SJS." It's annoying, but you'll eventually figure out what makes sense to you (for now, I just go with "Primary SJS").

[Scottietottie]

Hi 

The only positive blood test I ever had - apart from thyroid disease - was suggestive of lupus. (elevated anti-dsDNA) The symptoms however were all SjS but no SSA SSB markers.
My first rheumy dxd lupus/sjogrens overlap with the emphasis on SjS. Treatment the same for both anyway. I've recently had the SkS 'label' taken away by another rheumy who wants clinical back-up for a dx but the treatment is ongoing.

Autoimmune stuff seems to be amazingly individual and a lot seems to be on a kind of spectrum.

Take care - Scottie 

[A66eyroad]

Dragonfly, nice explanation! I think you've hit the nail on the head, my friend!   

[Chickpea]

Genko - you've put into words exactly what I've been thinking for a long while. 

It helps me to think that we all have an individual set of symptoms and sometimes we bump into people with a similar set - get enough of us and you've got a diagnosis. 

How do we all feel about the diagnosis of 'Sjogrens'?  I know I felt better when I got a 'label' rather than being in limboland.  But there are times when I don't seem to 'fit' and I just remind myself that it's a unique journey I'm on.

Thanks again - Chickpea

[Fairykissez]

Dragonfly that was a wonderful explaination! Thanks so much, it really did put things into perspective for me. Dr they talk to you like you just automatically understand what they are saying and my dr although I love him dearly isnt the explaining type.

Thanks again 

[Doxie]

Chickpea, I'm like you, I was so glad when I left the limbo land and got the official diagnosis. Though, it's not fun having Sjs, it's a relief to know what I'm dealing with.  I say that tongue in cheek, because it seems like with Sjogrens, we never know what we are dealing with. New symptoms always seem to pop up, or current symptoms flare or change.

What I like about the forum is that it's easy to see that so many of us have some of the same symptoms, and that just kind of helps me feel better, kind of like, I do "fit in", and other people are on the same page, understand and have experiences and tips with the same issues.

[Skylar]

Genko and Dragonfly - I really enjoyed reading your responses.

I do know that most of these tests that we take are non-specific - they may be called "names" that sound like they are definitive for one disease or the other, however, for the most part they aren't. They do signal problems with our immune system - our immune system is not working properly - they do tell our doctors that we have autoimmune disease.

It's also clear to me that these labels that get applied to us, from my own experience may not be the most accurate. For example, for several years I was diagnosed as MS before being switched to Sjogrens when the lesions in my brain did not progress as would be expected in MS. For years I've been told that "maybe you have lupus too" by several rheumys but it's never officially been put down on my chart. Like others I also have other AI diseases like Hashimoto. When I first found this board I was so excited to see others diagnosed with Sjogrens who have more than just dry eyes and dry mouth which is what I had learned back in school was what Sjogrens was. The way I think of this is "I have autoimmune disease" and the labels are to some extent irrelevant as long as I'm getting appropriate treatment.

OTOH I'd love to have an accurate diagnosis - being labelled correctly and having that label be well defined, tests that are so specific that they only diagnose my disease and not anything else - life isn't perfect and neither is the labeling of AI. If it would, every rheumy, every PCP, every Dr. would come to the same diagnosis quickly and institute treatment early for best effect.