A Sjogrens/Lupus question

[Liz D.]

Many times a person will be diagnosed with Sjogrens and then many years later, get a Lupus diagnosis.  Does that mean that they did not properly take care of themselves while they had Sjogrens so it progressed to Lupus?  Or would they have developed Lupus no matter what?

I hope this question makes sense.  I guess the bottom line is.....if I do not pace myself and treat my Sjogrens properly, could I get Lupus because of that?

Liz D.

[cccourt1942]

I can't answer this question, but do want to comment on the combination of the diseases. Years before I was diagnosed...actually...a couple of decades or more I had an acquaintance who had Lupus.  Her symptoms were strangely familiar to mine.  I purchased a book...and read.  It was quite unsettling, and so much worse than how I felt--and then..before I finished the book..she was diagnosed with scleroderma. Went to the library for this one.  Oh goodness.  It upset me so...never finished the Lupus book.  Since then I've known several women with Lupus.  None of the others have been diagnosed with anything beyond the Lupus. 

Now...I'm in my fourth year since dx of SjS...and while I don't KNOW that many SjS patients, I've read just about everything from everyone on this forum.  Again, I can't answer---but going out on a limb here:  I don't think so.  Really--it's a roll of the dice for either, both, or more.  We all know this is genetic, we all know autoimmune disesases cluster in packs, (we must be good host organisms or something) and I can't believe because (for instance) my psoriasis led to SjS...or that someone's SjS would lead to Lupus.  Again...my opinion only. 

You are young, dxed young, and have a lot more life to live post diagnosis.  I don't.  This may be why I don't ponder such a possibility.  My rheumy checks my joints, looking for RA signs...there are none...but if they appear, I don't think it would be from SjS as much as old age: I'm 75.  I have enough osteoarthritis, I think I skipped the RA.  Speaking of RA, I have met more SjS patients who have RA with SjS (and ALL ages, 40s, 50s, 60s, etc.  It's the one I feared when I was dxed and learned about Sjogren's. 

Tell your doctor...have someone be aware...and have them monitor for early signs.  Will take the worry off of you--and put the responsibility on someone else!
Good luck,
ccc

[jazzlover]

I think it's often a matter of how the testing goes. Some people have bloodwork that shows for one or the other auto-immune illness. Who knows what really makes the test show positive for one or the other?

Many with auto-immune disease are later dxd with an additional  one. I don't think it's due to not having taken care of oneself, I really don't.

I suspect I have Lupus and it just isn't showing up yet. Whether it does or not, I'm not going to panic. I have enough worries with all the maladies I now manage.

[Liz D.]

Cccourt and jazzlover,

Thank you so much for your replies.  Both of you made perfect sense.

Liz D.

[Linda196]

I specifically asked my rheumy, when I was diagnosed with Sjogren's after dealing with Sarcoidosis on a "treat the symptoms only, no steroids or chemo " approach for nearly 30 years; if I had gone to the big guns when initially diagnosed, would I have avoided Sjogren's? He told me it probably wouldn't have made a difference, I had an immune system that was going to act out and there really wasn't any preventative therapy.

That theory proved out 10 years later when I developed polymyalgia rheumatica while taking Prednisone, Plaquenil an MTX, and had to juggle those drugs for a year or so to get some kind of control. Even now, 3 years later, I have to adjust Prednisone for PMR flares as well as sarcoidosis and Sjogren's flares.

[Liz D.]

Thanks, Linda!  I guess we'll either get it or we won't.

Liz D.

[warmwaters]

My best guess - no, not treating Sjogrens will not lead to lupus.

Couple of things - typically lupus is diagnosed much younger than Sjogrens.  Lupus is often in 20s and 30s, Sjogren's post menopause (broad categories here, I know everyone has their own story).

I had a rheumy who sometimes speculated that eventually we'll figure out there are several forms of Sjogrens - with different biological pathways. One version (in her speculation) is has a high overlap with Lupus, and others might be related to fibromyalgia, or other issues. This doesn't make it true, but it felt right to me based on the wide variety of experiences people report here.

With that said, you should probably make sure to manage your Sjogren's as best you can, regardless of whether it might lead to lupus.  The more extreme forms of Sjogrens can be pretty bad too, so if there are things that can improve your quality of life now, and keep disease activity low, it's probably worth doing.

[Nomad]

I was diagnosed with Lupus in my twenties and Sj Syndrome in my fifties.

I heard this was the common pattern.

I don't think there is any true correlation between taking care of oneself and getting a second dx.

Just some sort of natural or even genetic tendency and perhaps the right set of circumstances.

I was doing very well with reference to my Lupus. However, immediately before I got dx' d with Sj. Syndrome I had several sinus infections in a row probably from being exposed to young kids and mega stress in my life including the death of a family member. I suspect a virus (would often have a cold before a sinus infection) plus a weakened immune system (big time stress) plus genetics (autoimmune history) brought the dx "out."

[Liz D.]

Thank you all for your responses.  They make so much sense.  I do think I would have had Lupus by now if I was going to have it.  I will stop worrying and focus on treating my Sjogrens as I have been doing well for the last few years.

Liz D.

[Scottietottie]

Hi 

I was dxd with Sjogren's on symptoms but I don't have the bloodwork or lip biopsy for it. I do have measurably dry eyes and a dry mouth and the aches and pains we know so well.

I was, however, referred to the rheumatologist because my endocrinologist ran some extra tests - apart from thyroid - and my anti-dsDNA was elevated - suggestive of lupus. Never had a lupus butterfly or anything though.

My rheumatologist has continued with the SjS dx but has explained it to me as an 'autoimmune spectrum'. He has no doubt I am 'on the spectrum' and as both diseases are treated in much the same way, he sees no reason to try and pin it down.

Take care - Scottie