Interesting article about sero negative SjS

[bluegardenia]

this for me is quite difficult to understand bec english is not my language. and i also wonder if someone who is negative for some tests can change  the result with time passing. or if one is negative for ssb or any other can become positive after a while? bec if it is so all the general "landscape" changes.
Or not??

[MAT51]

Mine have changed a lot blurgardenia. But I have no idea if this is because of drugs I was taking around the time of testing. My ANA wasn't tested at first, only my RF - which was a weak positive. Then I was diagnosed with RA. Then after that I was tested for ANA and all the rest and it was equivocal - don't know more than that. Then last year, off all RA meds and steroids, I was retested and my ANA was clear positive with a different pattern to Sjogren's. But my RF and ENA panel were all negative. So on the strength of this and small fibre neuropathy, plus raised immunoglobulins and high inflammatory bloods (always) I was advised to have lip biopsy - which was entirely positive.

Could my ENA panel change and become positive over time? Not sure but I think it's only the less specific ones that can change? Could be wrong though.

Your English reads very well to me.

[Tharrell]

Hi bluegardenia, yes, blood work can change over time. I was positive for ana and ss-b first. It took two years for the anti- rnp to become positive, but now my ana and ss-b is negative. My rheumatologist attributes the negative ana and ss-b to treatment. It can all get so confusing!
The more important matter is that a rheumatologist recognizes what is going on and treats your symptoms. Thos rheumatologists are unfortunately few and far between.

[irish]

Yes, we can be positive or negative with our autoimmune blood work and then "convert" to just the opposite. My immunologist tells me that just because we convert from positive to negative doesn't mean that we are cured. Our body can still have all the symptoms but change from positive to negative.

Then there are the people who have positive blood work all the time and never have any symptoms. It is just the way our bodies are. People can have the positive blood work and no symptoms--ever-- or negative and have lots of symptoms. We just have to accept things for the way they are. It doesn't work to place all our hopes and dreams on our blood work. We have to take the symptoms and treatment, if possible or necessary, and live life the best we can. Good luck. Irish

[Nymph]

Yes, in my medical file it says "undifferentiated inflammatory polyarthrophy" or something like that. Basically UCTD. And "sicca". I was first told I had RA. Then she retracted that a year later. According to the research I have a strong chance of still developing RA, exactly what chance is hard to tell. I feel that with every year that goes by without it I get a little bit safer! I seem to have mostly stabilized in that my disease does not appear to be progressing.

BTW, anti-CCP is actually considered seropositive for Sjogren's in a small cohort of studies, although not in any official capacity. Apparently it occurs in ~5% of Sjs patients without RA. Thus I cannot say that I am seropositive OR seronegative, but rather that the serology of this disease is in the baby stages yet. Clearly I have autoimmunity. Yet I believe that some of my problems may stem from a genetic connective tissue disorder (EDS-H). I will probably never qualify for any study since I cross too many boundaries. Those of us who have a complex diagnostic picture will probably be forever putting the pieces together for ourselves, and seeking outside-the-box docs who will work with us.