Is it possible to have Sjogren's with only SS-B positive??

[singeanna]

I was diagnosed by a rheumatologist with Sjogren's in February with my only positive lab result being the SS-B.
SS-A and ANA are negative. I went to a second rheumatologist for a second opinion and he said the probability of my having Sjogren's is very low with only SS-B positive. Anyone have any insight on this? I have dry eyes and mouth, small fiber neuropathy, IBS, joint pain, fatigue, etc.

[irish]

The possibility of having Sjogrens with all negative is much higher than you would realize. I can't remember the percentage right now but I imagine someone else will know that. I had Sjogrens and several other autoimmune diseases for over 35 years prior to being diagnosed with a lip biopsy in 2003. My ANA was negative for years as were all my other marker blood work. I didn't have positive blood work until a couple of years after the positive lip biopsy. I really surprised a few doctors cause I had been telling them for years that I had to have some autoimmune disease.

By the time I was diagnosed I had lost the hearing in one ear, had 2/3 of my teeth removed, had arthritis, total body aches off and on, problems with many of my tendons being inflamed, swollen red and hot joints on occasion with negative blood work, plus much illness during my third pregnancy. I did not even have dry eyes until a few months after I was diagnosed with the positive lip biopsy.

The unfortunate thing is so many doctors, including rheumatologists, are very uneducated in Sjogrens and just don't get it. In fact many doctors refuse to believe that there is such a thing as seronegative blood work in people with autoimmune diseases. This results in many patients having to fight their way to diagnosis much longer than necessary plus having to suffer because no doctor will treat them. The good doctors understand that blood work can be negative and will treat the symptoms of the disease.

Also, it is not as well known by many doctors that the blood work can convert back and forth between positive and negative. Having positive blood work and converting to negative blood work doesn't mean that one is cured. My immunologist says he treats the symptoms not the blood work.  Blood work is very fickle and will go back and forth between negative and positive so having blood work done real often is a waste of money. I have probably had some of my blood work done only 4-5 times in the 10 years I have been treated by my immunologist with IVIG therapy. If you don't have good luck with your doc you may have to get a second opinion. Good luck. Irish

[singeanna]

Thanks Irish. The doctor I saw that said the likelihood I have Sj?gren's is very low is a doctor who runss the Sj?gren's program at Duke. He should be extremely knowledgeable about Sj?gren's. I asked about getting a lip biopsy and he said he didn't think it was necessary but said if I really wanted one that he could be persuaded to order it for me.

[irish]

Well, I have to admit that is interesting little tidbit of info about your doctor. How about a second opinion with an immunologist that isn't on staff at Duke. It depends on how much you want to pursue this at this time. Your first rheumy may have something more to add also. Irish

[quietdynamics]

Hello singeanna...

Sorry your consult @ Duke was not more productive in providing a 'cause' for your symptoms.

SSB is 1 of 4 autoantigens commonly referred to as extractable nuclear antigens.
A positive result for SS-B/La antibodies is consistent with connective tissue disease, including Sjogren's syndrome and lupus erythematosus.

ANA has 5% prevalence of Fasle/negative.
Did your lab include the titre ratio?

Criteria for Sjogrens see pg. 479.  Table 1. Demographic and SS-related phenotypic characteristics among 1,618 participants enrolled in the Sjogren's International Collaborative Clinical Alliance registry as of March 8, 2010*

Positive serum
Anti-SSA/Ro   573 (37)
Anti-SSB/La    368 (24)
Anti-SSA and SSB    354 (23)
Rheumatoid factor    590 (38)
ANA titer
1:40    1,054 (67)
ANA titer
1:320    632 (39)   http://www.rheumatology.org/Portals/0/Files/2012%20ACR%20Sjogrens%20Classification%20Criteria%20v.pdf

There should be other information from lab from panel.
And Dr. should include order for lab on Vit D and Vit B (known to be low in AI patients)
I was originally seen by Chief of Rhuem @ teaching institution and never had a lab for Vits until I was seen at a SJS clinic.. deficient in both and have since reaped benefits from therapeutic doses to raise levels, including lessening pain and nerve numbness/tingling, muscle weakness.

A start on vitmanin information:
Vit B's aid with nerve pain. https://en.wikipedia.org/wiki/B_vitamins#B_vitamin_deficiency
Vit D3  https://en.wikipedia.org/wiki/Vitamin_D
Google Scholar is where you can find studies.

After a decade on this journey I have learned to get the most value out of my efforts, time and money... so I do not leave until I get an answer or at least an " I am not sure, don't know" from Dr.

I would go back to diagnosing Rheum and have a discussion about further tests before considering the need of a lip biopsy.. no matter who needed "persuading".

For the eye dryness after trying different products.. I read studies on Systane and use that product (including study where Restasis was more effective + Systane) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3130915/Vit D3 

I hope some of this information helps you.

[singeanna]

I've had my b12 and vitamin d level and they are WNL.
I've actually had 3 rheumatologists now to tell me without
Positive ANA or Ss-b that a positive SS-B doesn't mean anything.
Im thinking a lip biopsy would be my only answer.

[SjoGirl]

Is there a reason you are choosing to work with docs other than the rheumy who diagnosed you with Sjogrens? It is so difficult to find a doctor who will believe and support you and this person is willing to do so.

FYI I had only positive reading (can't recall if it was SSA or SSB) when I was diagnosed. My other readings, such as ANA and SED rate, rose later. My blood work always vacillates so I don't take a great deal of stock in what it might be at a certain time.

FYI 2 I went to Hopkins for a second opinion so I do understand the desire. I had a lip biopsy done and it was horrifically painful at the outset and for months. It was negative so they diagnosed undifrerentiated connective tissue disease. Other docs have said it's Sjogrens.

Others here have had little trouble with biopsies so it's all really up to you.

[singeanna]

I went for a second opinion since he is an expert and to see if there are other treatment options besides what current rheumy is offering. He does clinical trials so was hoping to get in one. Also since
2 other rheumatologist didn't believe my bloodwork pointed to Sj?gren's I thought it important to go.

[irish]

I am going to suggest an immunologist again as they are very educated in aspects of autoimmune/immune disease that other doctors don't always relate to.

I had been diagnosed with Sjogrens in 2003 almost by accident and had some other significant issues turn up that required other specialists. I was sent to an immunologist during this time and that is where things really started to happen. I was diagnosed with myasthenia gravis, hashimotos and severely low t-cells which explained all my infections. I have been on IVIG infusions since 2006 for my myasthenia and it also helps my low t-cells. I have gone once a month for 10 years and my infusions are 6 1/2 hours each time.

I was recently diagnosed by immunologist with autoimmune ear disease as I am losing the hearing in my hearing ear. I have 2 antibodies in blood that are destroying my hearing so I am now on 6 months of solumedrol 1000 mgm infusion (once month for 2 hours)as this is the only treatment to hopefully save my hearing. This is a steroid or cortisone product. I now have 5 autoimmune diseases and 2 immune deficiencies which affect fighting off infections.

Autoimmune diseases are so complicated and there a lot of doctors who can cause you grief. I had 2 not very good rheumatologists appts. and went to a referral a couple of years ago with a big shot neuro at the university who was a rude, arrogant, wouldn't listen. I challenged him and he didn't like it. He assumed I would bow down to him but that did not happen. Sometimes sitting back and doing nothing for a couple of months gives us time to think things through and make decisions that will work better for us.

I will admit that after seeing 2 rheumatologists I would never go to one again. There are doctors who don't even specialize in some of our issues who just happen to have the knowledge that is helpful to us. My new internist is really great with listening to me and  working with me. I have been trudging off to doctors for so many years that it is beyond getting old. It is part of the life of autoimmune disease.

Every doctor I have gone to has something to say, but about 85% of them for the first years didn't always do me any good. We have to just keep plugging along until the right doctor comes into our lives. I wish you well. Irish

[quietdynamics]

Clinical trials adhere to SJS criteria for inclusion. All " t's" are crossed; all "i's" dotted and then checked again to not cast the slightest shadow of impropriety of method on result(s).

Medical oath, "First do no harm".

Biomarkers clinical study; This is a study brought to my attention by Sjogren's Dr., I am considering to help with research.
Study requires SJS diagnosed per criteria, AND healthy recruits. (* you can call if the logistics work for you to see if you fall into the healthy recruit category)
The test requires a lip biopsy,labs, etc. evaluation all at cost to the study.. so perhaps something to consider?
(Trying to talk my 23yr. daughter into being a healthy volunteer.. just for the workup alone to create a baseline.)
https://clinicaltrials.gov/ct2/show/NCT02422407   I strongly recall seeing more locations. Call to Biogen should give current locations.

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Chronic immunosuppression with Imuran, a purine antimetabolite increases risk of malignancy in humans. Reports of malignancy include post-transplant lymphoma and hepatosplenic T-cell lymphoma (HSTCL) in patients with inflammatory bowel disease. Physicians using this drug should be very familiar with this risk as well as with the mutagenic potential to both men and women and with possible hematologic toxicities.

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