I have primary sj & all my blood labs are neg. No sj antibodies show up in the blood tests. I have advanced complications from this illness. Can anyone tell me what my doctor needs to check, what kind of doctor you go to, or if anyone else has this problem? I am getting progressively worse & I have every symptom on the skeletal chart on this website but advanced! Thanks for you help, God bless you, & I'm praying for all of you as well.
Hi It's Me,
My SS was diagnosed through bloodwork, but it did NOT show up until the test was taken several times. Finally it showed up as a 'false positive' and my GP said that meant that it would show up positive in the future, and it did. When it did it was off the charts high. For some reason, it can be elusive, but I don't know why.
Hope this helps.
Wishing you well,
SK
I have primary SS which showed up in a blood test, then disappeared, reapppeared, and disappeared again. However, my salivary gland biopsy was positive. My Cleveland Clinic rheumatologist confirmed that this happens in a small percentage of primary SS patients. The Salivary gland biopsy is the "gold standard" for diagnosing it. Have it done by an oral surgeon as it will stage the disease process for your doctors.
I sought out a dry eye clinic (Flaum Eye institute Rochester, NY) and it has helped.
Continue to ask questions and google SS clinics. Duke has one for instance. One thing is, for sure, you need a dry eye opthamalogist.
Good luck! Any questions, just ask.
Yes, my rheumy (now retired) diagnosed me with primary SS on the basis of symptoms, although I am seronegative. From the beginning, I had highly elevated ESR, and later when they started using the test CRP. Both are general markers of inflammation. I have also always had elevated serum immunoglobulins, IgA and IgG. Slightly elevated ANA - nothing to write home about. But my quality of life is greatly affected and the fatigue is perhaps the worst symptom at the moment, but nothing seems to escape me!
The U.S. Sjogren's syndrome foundation lists some of the standard diagnostic tests: http://www.sjogrens.org/home/about-sjogrens-syndrome/diagnosis
At the end of the day, I am no longer obsessed about getting the diagnosis confirmed, although they some tests where they image the salivary glands are considered a gold standard. My new rheumy does not believe in seronegative disease, so I don't really see him. I just focus on finding natural treatments I can tolerate, as I cannot tolerate most of the gold standard treatments, and perhaps above all, I just try to rest and work with the disease as much as I can now. Yes, it's frustrating, but I find I use less energy fighting my own frustrations about the disease.
Take care!
Jane
All of my bloodwork has been negative, although I was getting sicker. I had a lip biopsy and a Fine Needle aspiration of my parotid gland, which were both positive for Sjogrens. I have seen one rheumatologist who continued to state that I did not have sjogrens because I was seronegative, but my biopsies and eye tests (schirmer and occular staining) were postive. The lip biopsy is the golden ticket. Here in the Bay Area of CA at UCSF there is a Sjogren's clinic, in which did my lip biopsy and the Dr is great.
Hi Kaz, thanks so much for your post. It has made diagnosis so much clearer for me.
I’m not sure if anyone else has felt this but since being diagnosed with sjogrens I often don’t believe that I have it and feel a fraud saying that I do. I don’t think it’s because of denial, but because of the fight to get a medical person to believe I was physically ill. I must have somewhere begun to doubt my own judgement about my symptoms.
Anyway thanks it helps me to trust myself and the test results when it is written so clearly in black and white.
This is exactly how I feel - Do I REALLY have it? I was off the charts positive for both SSA and SSB, but they did not do a lip biopsy or the eye staining, so technically I do not meet all the criteria. I was definitely in a flare when tested. I have often wondered if the SSA and SSB go down after a flare? Do they go down after you are on Plaquenil a while? Do they ever re-run these tests?
Mirrie said:
Hi Kaz, thanks so much for your post. It has made diagnosis so much clearer for me.
I'm not sure if anyone else has felt this but since being diagnosed with sjogrens I often don't believe that I have it and feel a fraud saying that I do. I don't think it's because of denial, but because of the fight to get a medical person to believe I was physically ill. I must have somewhere begun to doubt my own judgement about my symptoms.
Anyway thanks it helps me to trust myself and the test results when it is written so clearly in black and white.
Wow, thanks Kaz! Lots of questions answered that have really been bugging me!
Great information, thank you so much! I am positive for SSA, negative for lip biopsy, and am getting my eyes tested next week. I am still sometimes confused about what I have. I also have positive antibodies for Celiacs, symptoms of Raynauds and Fibromyalgia. I try to just focus on the symptoms, but am frustrated without a true diagnosis. My Mom was recently diagnosed with Sjogrens, so I am fairly certain my diagnosis is clear.
said:
This is information I posted in another post today and have copied it straight across to here as it has percentages for Primary and secondary etc. in it for blood tests.
RO = the SS-A is a test for Sjogrens. A positive result for primary Sjogrens is seen in approx. 50-60% of people; and 35-40% for secondary Sjogrens. It can also be positive for other diseases such as SLE (lupus). A positive result indicates disease association of 25-30%. It can also be positive in rheumatoid arthritis and polymyositis.
LA = SS-B a positive test for disease association in Primary Sjogrens is 40-50%; and 15% for secondary; and approx. 15% in SLE. However, this is rarely seen in other autoimmune diseases, so a positive result is generally indicative of Sjogrens, especially Primary Sjogrens.
If positive to both SS-A (Ro) and SS-B (La) it is indicative of Primary Sjogrens and active disease.
Sm (known as Anti-Smith or Anti-Sm) is a protein call acidic nuclear protein. This test is highly specific for SLE (lupus), which means if someone tests positive to this it is highly likely it is Lupus. However, even though it is highly specific 96-98%, only approx. 24-30% of people with SLE actually test positive to it. This test helps to differentiate between Sjogrens and Lupus.
Sm/RNP (Known as Anti-RNP) is protein ribonucleoprotein. This test is not as specific and is positive in approx. 45% of cases for SLE. However, it can also be positive in Sjogrens. If positive to Anti-Sm and Anti-RNP it is highly suggestive Lupus is the issue. This test is also used to determine if a person has a mixed connective tissue disease.
Other tests that generally are also run are ANA, Anti-dsDNA.
ANA has 93-95% sensitivity for Lupus with 57% specificity. Meaning that in approx. 57% of time a positive indicates Lupus. So a positive test here is indicative it is Lupus but not 100%. This why other tests are also used to try to differentiate between diseases as there is not ONE specific test for people to know. But rather a patients history, symptoms and a range of tests. Sometimes patients do not show positive to tests but have all the classic objective symptoms of say Lupus.
ANA positive test for Sjogrens is 48% sensitivity with 52% specificity.
Anti-dsDNA - is for the diagnosis of SLE is 57.3% and the specificity is 97.4%. This test can fluctuate with disease activity and also be absent at times. This test is also included in the ELISA test, so if your doctor orders this they can also measure your dsDNA levels. Positive tests to this are also seen in other autoimmune diseases. However, you can see it is 97.4% specific for SLE. So if a person had positive ANA and positive Anti-dsDNA it would indicate Lupus.
As you can see, there is no one test but rather a series of tests. The doctors then have to evaluate any positives and the levels of the positive results and analyse which autoimmune disease does it more fit into coupled with a patients signs and symptoms. Not a straight forward process for many people and hence why sometimes it can take many years to diagnose correctly.Some specialists will treat people based on their signs and symptoms as they know not everyone is positive to blood tests. But then you will come across specialists who only believe in diagnosing and treating someone once they have a positive on bloods.
My advice to people is always ask your doctor for a blood test referral form for things like the Anti-dsDNA, ESR, CRP and ANA. You may even ask them to include SS-A and SS-B, and have these done when your symptoms are really bad, in a bad flare up.
I say this as most of the time we have to wait to see our specialists and by the time we see them one may not always be in a flare up period, and given that Anti-dsDNA can fluctuate and/or be absent, it is better to have these htings tested during active flares. Testing ESR and CRP measures inflammatory markers, so will be positive during flare ups if autoimmune derived. So that is my advice to people who are struggling for a diagnosis.
If your doctor gives you this referral, please ONLY have it done during bad flare ups as otherwise it may appear negative again. Far better to attempt to capture the data required during an active flare.
I hope this information helps.
This is a good site for information on these tests.
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/r...It's me - this is the current criteria for diagnosing Sjogrens. If you meet this, print this out and take to your rheumatologist, or find yourself another rhuematologist.
ACR classification criteria for Sjogren syndrome
These classification criteria were developed by SICCA investigators in an effort to improve specificity of criteria used for entry into clinical trials, especially in light of the emergence of biologic agents as potential treatments for Sjögren syndrome and their associated comorbidities. This high specificity makes the ACR criteria more suitable for application in situations in which misclassification may present a health risk. They were accepted by the ACR as a provisional criteria set in 2012.
According to the ACR criteria, the diagnosis of Sjögren syndrome requires at least 2 of the following 3 findings:
In comparison with commonly used AECG criteria, the ACR criteria are based entirely on a combination of objective tests that assess the 3 main components of Sjögren syndrome (serologic, ocular, and salivary) and do not include criteria based on subjective symptoms of ocular and oral dryness.
Application of these criteria has yielded a sensitivity of 93% and a specificity of 95% for the diagnosis of Sjögren syndrome. These criteria do not distinguish between primary and secondary forms of Sjögren syndrome.
This is a link that has the diagnostic criteria for research for Sjogrens. This is a stricter criteria as they need to be sure a person has Sjogrens when testing drugs etc., in a clinical trial based condition. All clinical trials have very strict criterias.
http://www.sjogrens.org/home/research-programs/healthcare-providers...This link may also be of interest to some.
https://www.ucsf.edu/news/2012/08/12521/new-standards-improve-diagn...
I don't understand how you got diagnosed without the antibodies. The antibodies (ANA) showed up, but that did not tell them WHAT KIND of auto-immune disease I had (only that there was some kind of auto-immune disease present) until further specific testing was done which showed the SSB markers in the blood. Anti-neuclear antibodies are what your body produces when it is waging war against itself.
I have always had mixed blood work results. The worst one for me was the last one I took. First appointment with a new rheumatologist so he ordered every test to confirm dx and try and find why I am getting sicker every day. Every single test came back negative!!
ANA, IgN, IgG, thyroid (on medicine for Hashimoto's so that was a good thing), etc. He had first suspected Lupus. When every test came back negative he put me on steroids and set another appointment for six weeks. One more week of no improvement and fever every day, I can make it....
Well said, Kaz!
Thank you kaz for this. I will print your response out to take with me Thursday. I’m so very tired of no treatment working to at least relieve fever.