questions for those who are SSA or SSB positive

[SunshineDaydream]

I tested positive for SSA in June 2015. I noticed my lab results from May show my doctor tested for SSA and SSB again. I'd have to check my records to see if he also tested for them between between June 2015 and May. The tests are about $80 each before insurance payment. I'm not sure how much of my co-pay goes towards each. I'd like to avoid spending money on additional SSA and SSB tests if they are not necessary.

If your labs ever showed you were positive for SSA or SSB, has your doctor checked again and if so, how often?
Why would the doctor keep checking if the results were already positive?

The only thing I can think of is maybe it's an insurance requirement to justify paying for Evoxac. Is it possible to change from positive to negative?

[eye2dry]

I had positive SSA and SSB in 2010.  Later on I asked my rheumy if
he was going to test me again someday and he said it was a waste to do it
b/c I was positive for sjogrens.

I am assuming that your SSB was negative since you only typed in your SSA
was positive.....so, maybe he is rechecking SSB results periodically.
Or, maybe he doesn't know that much about sjogrens and that you
don't need to do this once positive results.

shelly

[Navigator]

I am positive for both. I was tested initially in 2009 and was retested only when I changed Rheumatologists in 2016.  I too was told there was no reason to retest from my initial rheumatologist.  Positive was positive.

[Judie P]

Never had it done since I was tested in April 2015 and was positive for SSA only.

[Dawnmist]

I initially was tested three times over the course of 6 months.

• The first one only tested RF/ANA, and picked up the SSA. My GP at the time had been testing for a range of things to "rule them out" because I was complaining of widespread, constant pain (that had been with me for most of the 22 years I'd been seeing him - I just put it in numbers over the course of a month and graphed it, at which point he finally realised it wasn't just "occasional aches"). The test was done more to prove that there wasn't a "real" reason for me to be aching, I think.
• The second test (2 months later because I was told the ANA was clear and not even informed of the positive SSA result) was done by a new GP at a new practice, and did the full ENA panel that the initial testing lab had recommended after the first test, and picked up SSA positive and SSB (low positive) .
• The third one was done 3 months later by the Rheumatologist the new GP sent me to, to verify that the testing lab had not made a mistake. That was SSA & SSB positive, and Ro52 (low positive).

After that, I was told that continued testing wasn't needed. I can understand why the repeat tests were being made in my case - I had fatigue, tendon inflammatory issues, muscle pain and progressing nerve pain, but I didn't have dry mouth and only had a mild level of dry eye, so the Rheumy was unsure that the issue really was Sjogren's. Since then, the dry eyes and dry mouth have progressed a bit - but I'd still class them as fairly mild compared to what I've read in the forum. The nerve damage has been confirmed to be Small Fiber Neuropathy, and is progressing at a frightening rate. Last year it reached the point that without significant pain medication I could no longer use my hands...at the moment it's creating increasing pain in the heels and soles of my feet to the point where I'm losing the ability to walk on them due to pain. I have a set of crutches that can be used by putting your weight on your forearm instead of your hands arriving today (I cannot use anything that needs me to put pressure on my hands). My Rheumy has referred me onto a pair of Rheumy's with the major Lupus Clinic of one of the main hospitals here, in the hope that I can get access to Rituxan infusions to try to stabilize the nerve damage - but that will take 2-3 months. Rituxan is approved for use in Rheumatoid Arthritis here (Australia), but not for Sjogren's, so he's unable to do them himself. I see my Pain Management specialist in 2 weeks, and I'm currently hoping he has another rabbit he can pull out of his hat to get me through those few month of waiting. I'm already at 600mg Lyrica (max dose), 300mg Tramadol (400mg = max dose) and 60mg Cymbalta/Duloxetine daily - while both Tramadol and Duloxetine could be increased, taking the pair of them risks Seratonin Syndrome, and I've already tested trying only one or the other and couldn't manage on just one.

[SjoGirl]

When I first got sick my SSA was positive and SED rate was up (not outrageously so, but up). Eventually my AnA was positive, but my SSB has never been and my SED rate stablized over time.

With regard to blood work, my PCP has noticed that mine fluctuates. I've learned not to take much stock in it unless it's something like my white count getting too low (I have issues and had to have a neulasta injection at one point to raise my levels).

A few things to be aware of based on things I learned from my rheumatologist, the SSA number is not indicative of degree of disease activity. As well, about 10% of people have a positive SSA without having Sjs. Also SED rate increases as we age and again is not necessary a negative sign.

I don't say this to be discouraging in any way, simply to share info I learned. You might ask your doc in what way repeating the testing would prove helpful. That won't sound like you are challenging him, rather just trying to understand his reasoning.

[Jasper]

I tested positive for SS-A in July 2013 and negative for SS-B at the same time. I also had a positive ANA test. I had a positive lip biopsy in Oct. 2013. I was diagnosed with Sjogren's Disease.

I have had no further testing for SS-A or SS-B or ANA. My Rheumatologist said that I have Sjogren's Disease. Period. There would be no point in continuing to test SS-A, SS-B, or ANA. If one has the disease, then one has the disease.

If you had tested negative for everything, then there would be a reason to retest.

SS-A and SS-B testing is not free of flaws. The tests they use frequently show false negatives, even when they are positive, because the tests have been changed. The current  tests are not as sensitive as the older tests and they frequently come out as false negatives when an older test would have shown a positive result.

I don't think it is an insurance requirement. I think it is your doctor.

[SunshineDaydream]

Thank you for all of your responses. I will ask my rheumatologist about it during my appointment on Monday.

Eye2dry, you are correct. My SSB is negative.

Dawnmist, sorry to hear you are struggling so much with neuropathy. I hope you are able to get Rituxan after consulting with the doctors at the lupus clinic. 2-3 months is quite a while to wait for an appointment when you are so uncomfortable and your symptoms are having such a great impact on your quality of life. When I have an appointment scheduled far in advance, I'm often able to get it moved sooner by calling to inquire about cancellations. Are you able to do that with your health system in Australia?

SjoGirl, my SSA and SSB results are positive or negative. There's no number. I wonder which form of test result is more common.

[Judie P]

I had an interesting conversation today with my rheumy.  She is the doc for all Sjogren's patients because she came from the UCSF Sjogren's clinic in San Francisco.  I was talking to her about autonomic neuropathy because of my symptoms.  It made sense what she said.  The digestive problems and constipation that I periodically get is not caused by Sjogrens.  I have had lesser issues with both since a young age.  Because I am older now (65), I continue to have these problems but the Sjogren's is making it all worse.  I also did not start with dry eyes or mouth.  In fact, mine was pretty good today.  Sometimes it gets dry but then stops.

When I walked into the hospital today, my blood pressure was 121/75.  Usually it is much higher.  My pulse was very low and the assistant was concerned.  She told her that it was normal for someone with Sjogren's to be in the 60s for pulse at times.  We took it afterwards and it was back to 85.  She went over my blood work since I was concerned about my BUN going from 12 to 21 in four months.  She told me not to worry.  All my other liver and kidney reports were good.   The rapid change was from being in a flair at the time I took the blood work and I was drier inside.

I think it can be very confusing at times, but we never know what our body is doing on any particular day.  I was lucky.  My ANA was positive and my SS-A was the highest it could go in 2015.  There was no confusion on whether or not I had SJS Primary.  I wish it could be that simple for all of you.

[Dawnmist]

Dawnmist, sorry to hear you are struggling so much with neuropathy. I hope you are able to get Rituxan after consulting with the doctors at the lupus clinic. 2-3 months is quite a while to wait for an appointment when you are so uncomfortable and your symptoms are having such a great impact on your quality of life. When I have an appointment scheduled far in advance, I'm often able to get it moved sooner by calling to inquire about cancellations. Are you able to do that with your health system in Australia?

Normally I could, but my Rheumy was handling the referral process, so I need to wait to hear from the new Rheumies first . I don't actually have an appointment yet. I suspect (based on other appointments at that hospital) that I will receive a letter in the mail in the next week or two with the appointment time I've been given. If I haven't heard from them by the 18th, my current Rheumy said to call him and get him to chase it up. In the meantime, I just have his estimate of time to wait for the appointment.

[nannysbaby]

I was tested in 2007 for SS and my test came back positive for Ro and La.  My dr never has tested for them again.  He has tested ANA every time I go and as long as it comes back a negative he knows the meds are working. 

[irish]

I was positive with Sjogrens blood work in 2006 and have only had the blood work done about 2 more times since then. My immunologist doesn't believe in testing all the time. If it is positive or negative doesn't make any difference he says as he treats the symptoms not the blood work.

I did have my blood work turn negative down the road but he said I still had Sjogrens but was seronegative at the time. It has been a few years now so I don't know what the blood work is now. I, too, think it is a huge waste of money to keep retesting every few months and think that some of the blood work can be done every couple of years without changing the treatment. Good luck. Irish

[SunshineDaydream]

Dawnmist, sorry to hear you are struggling so much with neuropathy. I hope you are able to get Rituxan after consulting with the doctors at the lupus clinic. 2-3 months is quite a while to wait for an appointment when you are so uncomfortable and your symptoms are having such a great impact on your quality of life. When I have an appointment scheduled far in advance, I'm often able to get it moved sooner by calling to inquire about cancellations. Are you able to do that with your health system in Australia?

Normally I could, but my Rheumy was handling the referral process, so I need to wait to hear from the new Rheumies first . I don't actually have an appointment yet. I suspect (based on other appointments at that hospital) that I will receive a letter in the mail in the next week or two with the appointment time I've been given. If I haven't heard from them by the 18th, my current Rheumy said to call him and get him to chase it up. In the meantime, I just have his estimate of time to wait for the appointment.

Got it. I had a similar situation while waiting to get into Johns Hopkins as they were booking appointments 5-6 months out and needed to assess medical records transferred from rheumatologist prior to scheduling appointment. Eventually they gave me the first available appointment which was in December, but through persistent calling I was able to take someone's cancellation in September. I hope you hear something soon.

[SunshineDaydream]

I had an appointment with my rheumatologist today during which time I asked if there was a reason for continuing to test for SSA and SSB if I already tested positive for SSA. He said he continues to test because increase in titer / activity level could be an early indicator of lymphoma, though an imperfect test.

Also, I noticed that there were numbers associated with the tests this time, not just positive/negative as I previously said in this thread.  I think my ELISA test only had positive/negative.

Here's something I found on Serologic features of primary Sjögren's syndrome: clinical and prognostic correlation http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3602968/

On a positive note, from May 2015 to May 2016, I got my vitamin D up from 37 to 69 so I'm pretty happy about that.