Antibody question

[Carol101]

Has anyone initially tested negative for Anti-Ro/SSA and Anti-La/SSB then later, during the course of their disease, tested positive?

Thank,
Carol

[JoanElizabeth]

I have only tested negative and I don't think they were ever repeated. If you test negative and believe you do have the disease it may be worth getting a lip biopsy if you have not yet.

[irish]

It is not unusual to convert back and forth between negative and positive with these antibodies. Being negative doesn't mean that you are in remission or cured. Once we are diagnosed with one of the autoimmune diseases by symptoms alone it is not uncommon to convert to positive blood work months or years later. Autoimmune diseases are fickle and are totally unpredictable.

I have had Sjogrens for close to 50 years or so and never had any positive blood work until several years after being diagnosed.We just do the best we can with our lives no matter what our blood work is. Also, interestingly enough there are some people who will have positive Sjogrens blood work without any symptoms. This is another of the strange things that can happen in life.

It would be interesting to have someone do a study and note how many people who are sero positive (have positive blood work) with no symptoms and then convert years later and have symptoms. I don't think I have seen anything on this. Good luck all. Irish

[Carol101]

I certainly appreciate your responses. From what I've been reading, the risks of complication are different based on the age of diagnosis, and whether antibodies are positive at the time of diagnosis. I haven't seen a study that showed antibodies to be negative then have a seroconversion. Perhaps that study has never been done.  Many people take so long to diagnose, and the disease criteria has fluctuated over time, so I was just wondering what individuals on this forum have personally experienced? Do they repeat your tests?  Thanks.

Carol

[Jasper]

Carol .....

I had Systemic Vasculitis in 1993-94. I know I had a positive ANA at that time, but I don't know if I was tested for SS-A or SS-B at that time. I am not sure those tests were in widespread use in 1993-94. At any rate, my Rheumatologist, who felt the vasculitis was caused by an autoimmune disease, never could pinpoint which one it was. So, either I was not tested for SS-A and SS-B or the tests were negative. He treated me with high doese steroids for almost a year and the vasculitis finally subsided. He is an excellent Rheumatologist so I don't think he missed anything.

I clearly had Sjogren's Disease in 1993-94 but I don't know if the SS-A was negative or if it was not done at that time.

In 2012 I had an ANA test and  a SS-A test. The ANA was positive but the SS-A was negative. However, that test was done at a small lab in a rural area.  I did not trust the results from that lab. They screwed up on another test I had for a different problem. They were not sophisticated enough to be able to complete a test that should have been done.

In 2013 I had a repeat ANA and a repeat SS-A  done at a large and more sophisticated lab. Both the ANA and the SS-A  were positive.

Since then I have learned that the tests are not always performed in the same manner. Depending on the methods used by the various labs, the tests may show false negative results. It is important to use a lab that uses the most accurate testing method.

So, was I truly SS-A negative before 2013 and then converted to positive or was I positive all along and the testing was flawed. Since I was very symptomatic, even in 1993, I think it was flawed testing. I think I was most likely SS-A positive all along but the testing did not pick it up.

[Deb 27]

Carol, do you have  a link to those studies about the differences  in outcomes for people are are antibody positive and antibody negative? I was curious to read as I am negative ( right now).

[Carol101]

This is one of the references. It comes from that book I am reading.
http://www.ncbi.nlm.nih.gov/pubmed/24369420 I am most concerned with disease progression that impacts mortality. I am trying to see if there is an early, easy test that could imply increased risk, beyond just having ss, that puts you on those paths.
http://www.rheumatologynews.com/specialty-focus/lupusconnective-tissue-diseases/single-article-page/acr-cryoglobulinemic-vasculitis-in-sjoegrens-linked-to-lymphoma-mortality/44b9eac347dacfc8145151cfbb6c656f.html
The book mentions during the disease course, the detection of GC(germinal centers) in the biopsy has been associated with more aggressive development both
serologically and clinically. Suggesting the contribution of these structures to their local production. Specifically, positive RF anti -Ro/ SSA and anti-La /SSB is much higher in patients with GC than without. A number of studies demonstrate similar laboratory features in patients whose biopsies showed high lymphocytes focus scores only. There was a strong negative predictive value (99%) between the absence of GC's and development of B-cell lymphoma. This was a small study.  The positive predictive value was low(14%) you were more likely to have a positive minor salivary gland biopsy and a high focus score, but there was no significant difference in GC prevalence between patients developing lymphoma or not. They went on to say that the development of GC's might be a requirement, but not alone responsible for malignancy development. So if you have a high focus score and or GC's then very close monitoring seems to be warranted. My question is would the biopsy result be different depending on where you were in the disease process? Right now it appears they are almost exclusively used to fit the diagnostic criteria. That criteria has been, and in many instances still is, a moving target. I am thinking of just monitoring with blood tests every three months, If they change then I will proceed to the biopsy. I am currently only treating symptoms. This book is very good. I am no where near finished.  I wish my Rheumy would read it.
Book: Sjogren's Syndrome Novel insight in Pathogenic, Clinical, and Therapeutic Aspects. Roberto Geri, 2016

[Carol101]

That link might not work. Here is a copy
More


San Francisco ? Patients with primary Sj?gren?s syndrome who met criteria for cryoglobulinemic vasculitis were significantly more likely to develop B-cell lymphoma and to die during follow-up, compared with patients who did not have cryoglobulins, in a large multicenter study.
The study?s findings reveal one subset of Sj?gren?s patients who need more frequent and intensive follow-up, said Dr. Soledad Retamozo, who led the study while she was at the rheumatology unit at Hospital Privado Centro M?dico de C?rdoba in C?rdoba, Argentina. She is now with the department of autoimmune diseases at CELLEX Biomedical Research Center, part of the University of Barcelona?s Institut d?Investigacions Biom?diques August Pi i Sunyer.
Dr. Soledad Retamozo
Amy Karon/Frontline Medical News
Dr. Soledad Retamozo
Patients with primary Sj?gren?s syndrome can have cryoglobulins and several other kinds of autoantibodies, including anti-SSA/Ro, anti-SSB/La, rheumatoid factor, and antinuclear antibodies (Clin Epidemiol. 2014;6:247-55). That diversity helps explain why patients have such varying clinical presentations and long-term outcomes, as researchers have noted. Cryoglobulinemic vasculitis is known to precede lymphoma in primary Sj?gren?s syndrome, but few studies have examined the association or effects on mortality.
To explore those questions, Dr. Retamozo and her colleagues at rheumatology centers in Spain and Italy performed cryocrit testing in 515 consecutive patients with primary Sj?gren?s syndrome. A total of 94% of patients were female, and they averaged 54 years of age at diagnosis. In all, 65 (12%) of the patients tested positive for cryoglobulins, resembling the prevalence in a prior report (Semin Arthritis Rheum. 1998 Dec;28[3]:200-5).
About one in every three patients with cryoglobulinemia also fulfilled the classification criteria for cryoglobulinemic vasculitis that were published in 2011 (Ann Rheum Dis. 2011;70:1183-90) and validated last year (Rheumatology [Oxford]. 2014;53[12]:2209-13). Patients who met the vasculitis criteria were ?sicker? than other cryoglobulinemic patients by many measures, according to Dr. Retamozo. They had about twice the rate of type II cryoglobulinemia (86% vs. 43%), a fivefold higher average cryocrit level (6.6% vs. 1.25%), a more than twofold higher cumulative mean ESSDAI (EULAR Sj?gren?s Syndrome Disease Activity Index) score (35.3 vs. 16.2), and significantly higher rates of hypocomplementemia, monoclonality, lymphadenopathy, peripheral neuropathy, and renal, skin, and joint disease.
Over an average follow-up period of 9.1 years, 9% of the entire cohort developed B-cell lymphoma, and 6% of the cohort died, Dr. Retamozo and her associates found. Cryoglobulinemic patients with primary Sj?gren?s syndrome were more likely than test-negative patients to develop B-cell lymphoma (hazard ratio, 2.56; 95% confidence interval, 1.03-6.35), and the association was even stronger for patients with cryoglobulinemic vasculitis (HR, 7.47; 95% CI, 3.38-16.53). Patients with vasculitis also were significantly more likely to die during follow-up in a Kaplan-Meier survival analysis (HR, 4.36; 95% CI, 1.32-14.47), Dr. Retamozo reported.
The findings reflect a recent systemic review and meta-analysis by researchers from the Mayo Clinic (Rheumatology [Oxford]. 2015 Sep 27. doi: 10.1093/rheumatology/kev354) that separately linked vasculitis and cryoglobulinemia to mortality in primary Sj?gren?s syndrome. ?We measure cryocrit every 3-6 months in our Sj?gren?s patients, and it helps us catch patients at greater risk of developing B-cell lymphoma,? Dr. Retamozo said. ?For us it has been very helpful, in addition to tests for hypocomplementemia and monoclonality.?
The findings have been accepted for publication in the journal Rheumatology, she added.
Dr. Retamozo had no disclosures. One coauthor reported receiving research funding from Bristol-Myers Squibb.