Do I even have Sjogren's? Misdiagnosed possibly?

[IllnDontWantAPill]

It hit me like a ton of bricks that there's an SS-A and an SS-B test. My SS-A was flagged at 8.0 when the range is 0.0-0.9 I wondered a few days ago "I wonder what the difference is?" That led me to do research and I found out that when your SS-A is abnormal, it's less likely to be Sjogren's, but instead, Lupus, RA, etc. Is that true? Most places I read had the same info that correlated being that SSA is more likely to NOT be Sjogren's but instead, SLE or RA etc. Is this true? Have I been misdiagnosed by being told I have Sjogren's? Really upset about this. My rheumy was a nut job. I wouldn't trust her with my cat and the poor soul has 3 kids. I feel sorry for them.

Thanks!!

Gary

[aussie mum]

I think you will find that there are people on this forum that are SSA or SSB positive, many are also  sero negative. I feel it is more important that the Doctors treat your symptoms rather than your blood test results.

My daughter is SSA positive with a high ANA that is usually 1:1280. She usually has an elevated RF too. She was first diagnosed with SJS, these days her doctor refers to it as her Lupus.

Ultimately, I think both conditions are so similar it doesn't make much of a difference.

[Joe S.]

I started out with a butterfly on my face (lupus) and my first tests said lupus. My second tests said that nothing was wrong. My third tests said Sjogren's. The neuro said I was referred to him for Sjogren's. My next round showed nothing.  I change Rhumy's and Based on symptoms I had SICCA.

I believe that they are all interrelated and you need to be treated for your symptoms. Often today's doctors focus on the blood work to determine what illness you may have.

[IllnDontWantAPill]

Thanks all. What is SICCA and what is Sero and Seronegative? I don't mean to be argumentative but I care very much about the name of the disorder. I want to know exactly what causes me to feel like s@#$ daily. I'm not one of those people that care about treating it and feeling better ONLY. Mainly because I can't treat any of my disorders with medication after my brain surgery. The only thing I can have solace in, is knowing the name of what plagues me. I don't care if I had terminal cancer that was untreatable. I'd still want to know and know the name of it etc. There's comfort in knowing if nothing else since I can't treat it. I can deal much better just being able to put a name with the disorder. Thanks all!

[Kdmamm]

By no means am I an expert, but wanted to reply to your post:  I agree having a name, a label or the diagnosis is important. There is comfort there- you have a name to engage and embrace. So much better than saying " dont know, but i am sick." The worst is when you are sick and the doc says its stress, anxiety... I hope you are able to find a name for your own sense of peace.

Sicca, as I understand it is dryness. Dryness that relates to moisture producing glands. I had a doc early on that read my medical record that said its sicca when I have sj. I think the name is a more generic term to use for sj in absence of an actual diagnosis. For example: reactive airway disease is a more generic name for asthma but at the end of the day basically asthma. 

I think treatment will be basically the same for sicca/ sj.

This is just my opinion- others may agree or disagree. Hope you feel better.

[Dee]

Hi Illn

As far as I can tell ssa-a is associated with lupus, RA and/or Sjogrens. sero negative means the blood test is negative.  I am sero negative for ssa and ssb. Sicca is dry eyes and dry mouth. 

It is possible that you have both lupus and sjogrens.  I have been told I have lupus symptoms, because of malar rash, photo sensitivity and some others.  There is overlap with them.

I understand your feelings about wanting specifics I have felt that way for the past five years. I only this week decided to finally accept my diagnosis of sjogrens 100%.  I would have accepted it sooner with a positive ssa or ssb blood test even tho my lip biopsy shows lymphocytic infiltration and have been through much heck with the symptoms.

Take good care,
Dee

[Carolina]

Dear Pill and all,

Here is something I posted on another site about Immune Mediated conditions.  It applies here as well:

For those who have problems with getting a diagnosis/treatment, I have a some ideas and thoughts:

1. Go to a large medical center with a teaching hospital, connected to a well known research medical school. Auto immune conditions are complex, interrelated and best dealt with by the doctors who are doing research in immunology.

This is a list of the 12 best known medical centers:

http://en.wikipedia.org/wiki/Medical_centers_in_the_United_States

2. Try to understand that as soon as you enter the world of auto immune conditions, you have entered an uncertain world.  Science does NOT understand the immune system well. The diagnostic tools aren't always accurate, and often don't exist at the level one would hope. The average doctor in private practice does NOT understand them at all.

3. The treatments for most auto immune conditions are NOT very effective. They do NOT address the cause of the condition. At best they are knocking down your immune system to keep it from attacking your body. Most of the drugs that knock down your immune system have serious side effects and when your immune system is knocked down, it may not fight off infections which is its main job. So you may have other infections more often.

4. Auto immune conditions cannot be cured with diet, exercise, herbs, acupuncture or any other alternative medicine. Auto immune conditions cannot be cured at all with our current state of medical knowledge. The key is to reduce the amount of damage that the inflammation of auto immune conditions can and does inflict on any part of our body.

5. Auto immune conditions have a host of co-conditions: profound fatigue, complex pain, depression, and many, many others.  There are ways to alleviate most of the co-conditions to some extent, but during a 'flare' (a period of strong activity of your autoimmune condition) you will most likely be miserable.

6. Learning to live with a chronic disease/condition takes most of us a long time. And the conditions keep changing. Auto immune conditions often travel in groups, bringing along their friends.....so there is an evolution in problems over time.

If this is depressing, I'm sorry. But if you truly are here with the misery of life with a serious autoimmune condition, you will learn that support, information, and shared experience are vital to maintaining any vestige of sanity.

I have been struggling for many years, and the last three and a half would have been unbearable without the many forums that have supported me on my journey.

Many of us are here to help you, if you want support.

Hugs

Elaine

[Nancy60]

I am SSA positive, SSB negative. I've been diagnosed with Sjogrens, and am just being watched for Lupus right now. The treatment I am getting is the same for Lupus and Sjogrens. I've not been diagnosed with lupus because I am negative for the Lupus antibodies (Sm, DS-DNA) and don't currently have nephritis, pleurisy, or other organ damage that is common to Lupus.  I do have dry eyes, mouth (sicca), malar rash, sun sensitivity, joint poin, fatigue. The Sjogrens diagnosis is based on the positive SSA, and sicca symptoms. 

Sjogrens frequently occurs with RA and Lupus known as an overlap syndrome if that occurs. Autoimmune diseases are very hard to diagnose and evolve and change over time is how my doctor explained it to me.  If your SSA is positive and you have low tear and saliva production, you can be pretty sure you have Sjogrens. You might also have Lupus or another autoimmune developing, but until tests specific for Lupus are positive and/or organ specific damage specific to Lupus occurs you won't be diagnosed. That's why periodic monitoring is important.

Initial treatment for Lupus and Sjogrens is Plaquenil and NSAIDS, sometimes Prednisone if in a bad flare. Then if that isn't giving relief they will look at other drugs like the chemo drugs and biologics.   It is with the more powerful drugs that being more certain which autoimmune is going on is important.

I don't know all the details of your case, but if the Lupus antibody panel wasn't run, I would want that done. If those antibodies were positive or you have Lupus specific organ damage, then I would ask my doctor to explain why Sjogrens and not Lupus. If you're not satisfied with his explanation, get another opinion.

Hope this helps

Nancy

[grammad97]

Well said Elaine!
Your words ring so true.
I went years getting tested for stuff and a name to what I had. I got a name and then it changed and then they added another and if changed again.
Happy to have my symptoms treated and also to have accepted this is my new normal...

[Nancy60]

Amanda,
The lab my doctor uses has a combination test that includes the antibodies most common to Lupus. The Smith antibody(Sm) and Double strand DNA(DS-DNA) are the most specific, but it also includes SSA, SSB, Sm/RNP, anti-cardiolipin antibodies, Lupus anti-coagulant.  Each of those tests can also be ordered separately and not all labs group them together as a panel. 

Since starting this journey I've been consistently positive for ANA (3.7, ref value >1.09);  SSA, anti cardiolipin and lupus anti-coagulant, RF x1time (low positive), DS-DNAx1lowpositive.  The RF and DS-DNA have since gone negative so might have been a false positive. It's been 10 years since my first positive ANA and start of this journey. I'm not so hung up on Which autoimmune this is any more as long as I'm getting treatment and am better than what I was at the start of this journey. I know this isn't going away and can't be cured at this time. If I can slow down, prevent progression I feel I am doing good.

Nancy

[paisley62]

These controversial subjects are addressed in  "The Sjogren's Book", ed. by Daniel Wallace, Sjogren's Syndrome Foundation, 2012. This book is available on amazon.com.  It gives criteria for a USA diagnosis of Sjogren's, and a related but slightly different set of criteria agreed upon by the International Research Community.

The loosest definition of Sjogren's is the USA criteria, in which specifically measured eye and mouth symptoms are both present, plus either SSA and/of SSB antibodies, OR a positive lip biopsy.  The International Researchers defined Sjogren's as having specific eye and mouth symptoms, plus SSA or SSB antibodies AND a positive lip biopsy.

The Sjogren's Book has chapters that tell what SSA and SSB antibodies are, and how they function to cause lymphocytes to attack healthy tissues.  There are chapters about similarities and differences between Sjogren's and Lupus.  There are many chapters about various alternative therapies.

The book's chapters were written by by over 50 experts in the USA, who represent most of the major Sjogren's research, medical, and educational institutions in the country.  Dr. Vivino of Penn Sjogren Center is an associate editor.  It is current as of 2012, and is packed with interesting information.

I kind of have the feeling that the criteria that currently define the auto immune diseases currently called "Sjogren's" and "Lupus" will change once the diseases are better understood.  Research is progressing rapidly, and a cure could even conceivably be found for Sjogren's in the forseeable future - you never know what is going to happen next! 

To partially address the original question by Gary - if you don't like your Rheumatologist, move on and find one you trust - no wonder you are confused.

[Nancy60]

I think I would be seeking a second Rheumy opinion, just my view on it, but if your Rheumy isn't at least R/O other possibilities before deciding on a diagnosis, I would be looking elsewhere, especially since you keep getting worse.  Good Luck on your follow up.  Don't be afraid to ask questions and speak up for yourself.  there are ways to ask without being confrontational that usually get better responses with doctors. 

Nancy

[aussie mum]

Great post Elaine.......

Gary, for another opinion, I think you should see an immunologist, as they specialise in problems with the immune system.

Good Luck.

[finallyadx]

Aussie Mom - sorry to hear your frustrations about not being sure what your diagnosis is.  Not knowing is half the battle, I think.  But if you are being treated with plaquenil and having success - that is something.

If you are not happy with your rheumatologist or feel like you are being given the run around - you may want to search for a new rheumy - someone who will listen to you, respect your opinion, and research your issues unil you are satisfied with your diagnosis and treatment.

I agree with other posters, however, there are so many similarities with sjogrens as with lupus, ms and many other AIs that sometimes it is difficult to determine which Ai one truly has.

Seek additional or new healthcare professionals if you are not happy with the one(s) you have and if you are not feeling better.
Sending positive thoughts and prayers your way.  Keep us posted.

[quietdynamics]

Gary, "everyone" and "anyone" who has doubts and is in decline should consider a second opinion. And perhaps as aussie mum suggested a different type of specialist.

Of course the reality is that "we" have limited energy, are frustrated, confused and at time afraid about the future..so sorting out the "new doctor" scenario is exhausting. Can someone help you with that?  I have gotten good information on Drs. from the pharmacy, they hear a lot of from folks picking up meds...you may be surprised at how helpful they are.

Elaine gave great information.
Sorry to put a tiny wrench in the mix. I was Dx' at a teaching/medical center. 1st Dr decided SJS/Lupus. I think a family situation occurred. 2nd Dr and care has been with Head of Dept who changed it to SJS, and two years later added Fibro.
Sept 3rd I see her to discuss going to a SJS center for a full evaluation.
Point is same labs...same teaching hospital...different Dx.  And I do not have the classical tender points for fibro...while other issues have become more paramount, beyond her expertise.  Things change...

Sjogrens/Lupus the same?
In terms of treatment and monitoring I would said no.
I have seen a difference in reaction to when I had a SJS/Lupus vs. SJS/Fibro Dx.
Textbook: Lupus, possible life threatening; Sjogrens, non-life threatening.

*newer definitions of Sjogrens are more inclusive.

Sjogrens is still viewed as sicca symptoms, "dry" ..."you will be fine,and live an active life" etc by some Dr. who are not up to date on the systematic, kidney, CNS, lung, etc possible implications.
Say the word Lupus ...whole other response, attitude and attention. Not with all, but with some.

The advent of the 15 minutes of fame Sjogrens had in the news (probably will pop-up again during the US Tennis Opens, saw one or two lines recently), I believe also has added to the continuing  misunderstanding about the severity and real life effect of this disease on average persons. To our detriment.
I mean really if someone can do all that what are you whining about? Exercise more.
And we are viewed in the context of social media, albeit inaccurately.

So if you see an article and want to spread awareness; if there is a comment section please DO post there with a link here.  ( I will start a new thread)

It often helps to get "out of ourselves". 
I do not know your personal situation and I do not want to intrude. So this is only for something to consider.
We really do "feel" better when we can help others, outside of the home...and really feel better when we help other less fortunate than ourselves. One hour at a nursing home, just talking to someone helps that person beyond your dreams, 30 mins at a school with a child in the school library (they behave there..lol) one-on-one tutoring on your way to the pharmacy?  Gifts to give that empower ourselves.