Hi All,
From what I have read, if one produces (I have the blood marker) SSA Ro antibodies they say the disease process has been long and is more serious than those producing SSB's or none at all. Can anyone here on the Forum attest to this OR.....has anyone producing SSA Ro antibodies stayed pretty much the same throughout the duration of their disease? I know we're all individual but I'd like to know if I'm in for some real sickness in the near future. Looking back, I can see times when I showed a very poor immune system such as having shingles at age 9 and Epstein Barr virus for at least six months in my early teens. All my dryness, throat and sinus problems have been blamed for years on allergies instead of SJS. My doc feels I could have had this for my entire life yet I'm not bedridden with it. What is your take on this, please?! I realize I could have Lupus with SJS secondary yet, I passed all the other tests for Lupus. thanks!
Ohhhhh I also forgot to mention that my white count is still in the normal range of 5.6 and my other regular blood values are normal, for now.
My SSA antibodies were a strong positive a few years ago, (they fluctuate and are negative right now). I have been diagnosed with Sjogren's since 2004 or 5 (I don't remember exactly when anymore! ) And I actually was told I had Sjogrens back in 1979 when I was 19 and couldn't wear contacts, I had a Schirmers then of 0 and 2. Back then I wasn't referred to anyone or told anything except to use rewetting drops/artificial tears. I looked it up and read it was diagnosed in women over 40 who also had arthritis and decided the doctor was wrong and forgot all about it until 2003-4 when I started having all kinds of arthritis issues an my rheumy asked about dry eyes and mouth. I would have to say though, compared to many people on here, my issues are mild. I have joint and muscle aches and fatigue the worst, dry eyes and mouth are minor, some skin issues and no organ involvement. It has been relatively slow evolving too. Interesting question, I look forward to reading others experiences.
Nancy
Hi, I have the ssa antibody and not the ssb, I am relatively OK at the moment and things aren't as severe as a lot of people on here.
Leanne
Thanks for responding Lea....how long have you had SJS or when were you diagnosed? Do you mind telling me a little about your disease history? thanks a lot! jill
Thanks for your reply Nancy. This is good to know and I'm happy for you that you have done so well. Your story sounds a lot like mine and having SJS early on but not knowing of it. So far I'd say my arthritis and muscle aches/pains are a bit worse than my dryness. I wish it all could stay the same til the end!!!!
Quote from: gold55 on March 04, 2012, 10:03:33 AM
I realize I could have Lupus with SJS secondary yet, I passed all the other tests for Lupus.
Hi Gold55, are you saying your results were positive for Lupus? A little slow today I guess.
Shade
no problem Shade....being that I produce the SSA's which is an antibody for Lupus and not the SJS SSBs, the docs feel I could end up with Lupus/SJS as secondary. I think they are baffled at the fact that I don't have the dreadful fatigue and only moderate dryness.....for now.
My SS-A antibodies maxed out (meaning Quest stopped measuring) as did my ANA both times it was measured. My RF was also extremely high. I had learned to live with some of my symptoms and never thought much about them (like waking up with swollen, stiff fingers) and have now learned that I have a form of arthritis caused by SjS (we think anyway, it still may be RA but the X-rays didn't show joint damage, so we're assuming it's this other type that I can't remember now...). So I do have joint pain, horrible fatigue, my SjS has caused asthma and fairly significant weight loss (at least ten pounds and I was SKINNY to begin with... I'm a bit embarassed by it now because I think I look like I am either sick - well, I am but I don't want people to know - or anorexic, which I'm definitely not). I also have muscle pain, but that could be fibro? I have nerve pain too, but that could be from a mild form of Raynauds. All this stuff is so confusing :-\
My problems have gotten worse over the years. The dryness issues are actually the newer symptoms!
The only difference between the two that I've read about is that SS-A is a little less specific than SS-B because SS-A is seen with more illnesses than just Sjogren's. Also, people with SS-A/anti-Ro antibodies are more likely to be sensitive to the sun.
Hi I was diagnosed in march 2011 so its been 12 months. I started my problems about 3 years ago with chronic neck pain and it was at that time my rheumatoid factor came back positive, I saw a rheumy at the time who dismissed the rheumatoid factor and neck pain and sent me to physio. It was eventually my dentist who got me sorted as my partoid glands kept swelling and were painful, I got MRI and it showed sailadentis. I then had more blood tests and confirmed dry eyes and then got diagnosed. Hope this helps.
Leanne
I have both SSa and SSb and I seem to be getting worse, I was first dx about 2 years ago and I would defintely say my aches and pains in all joints have gotton worse, I'm no where near bed ridden as I still work but it's hard going and exhausts me all the time.
I have never suffered from dry eyes or mouth at least not yet, mine is all systemic.
Also I have always had a low WBC count it hovers between 1.2 and 2.0.
hi all.
I am confused now. Someone read this and break it down for me.
I thought my rheumy said I had definent SJS d/t positive ANA, RF, SSA and SSB. All were high numbers.
Does this mean a worse outcome for me.....immobility, systemic involvement,lymphoma,etc....
My first symptom was 8 years ago with my eyes.
Also is it possible if today I had labs for SSA ans SSB, ANA and RF drawn....they could be negative? Could then I assume no SJS and then be "normal and healthy".
someone could weigh in on this and say ...none of it matters at all. however,
I am a human and am curious.
eye2dry
The numbers can always change, but if you were to have those labs redone and they were now in the normal range, you would still have SjS precisely because these values can change. Six months from now, they could be positive again.
I do not think you are necessarily doomed to have a more severe disease based on your labs. How high was your SED/ESR? If those values were extremely elevated, then might be a good indicator that you have pretty intense systemic inflammation but again, even those values don't tell us the whole story since I can feel like absolute crap and have those values in the normal range! Before starting Plaquenil, mine were elevated, but not terribly high.
I think, unfortunately, with these AI diseases, it's all a wait and see and treat the problems as they arise kind of thing.
I was dx in 2007 with positive SSB and I had anti-RO factors with speckled pattern.
Since then, being on MTX and Prednisone, I have been positive, negative and anywhere you may go. The disease doesn't go away as someone said, but it's absolutely easy to go to negative blood results. I don't know but if you're in a flair, your numbers might be higher? I don't know those answers. It's just that some people go from positive to negative and wonder how it's possible. I sure don't know. lol
I also test positive for ANA and SS-A and have had symptoms since childhood (and was at one point diagnosed with allergies instead of SJS!), but even though I'm sick, I still work full time and live a relatively normal life most of the time. My disease has progressed, but plaquenil has made me feel a lot better, and the progression has slowed down since I started taking it. I'm not sure how long I've had the antibodies, because 2004 was the first time I was tested for them, but I've had them since at least then and probably longer. We really can't know what's to come, so I try to hope for the best and prepare for the worst.
Everyone's AI disease is different and it's impossible to definitively predict the path a person's disease will follow. Stress is really bad for us, though, so try not to worry too much about what's to come (easier said than done, of course!).
I have a borderline positive ANA (1:40) and an very high SS-A (>8.0) and am negative for SS-B. I also have a mildly low WBC of 3.5. I am 24 years old and have been experiencing salivary gland swelling along with joint pain since I was in my early teens. Around the time I turned 20 was when I started to experience mild dry mouth and only in this past year have my eyes gotten dry (Shirmer's Test - 5). I was only actually diagnosed with Sjogren's in December of 2011 after originally going to a surgeon for wrist pain. He ordered some blood work and my ANA came back positive so he referred me to a rheumatologist who ordered more blood work. Even though I have symptoms of Sjogren's and blood work supports it, my symptoms are mild (I am reluctant to say this because I do not want to jinx myself) compared to others who post on this forum. I have noticed that there have been more symptoms that are being added onto the list in the past 10 years or so, but they symptoms themselves have not progressed - except for the joint pain. Sometimes I wonder if my Sjogrens' is secondary as well, as so many symptoms of Sjogren's and SLE overlap.
This was a great post! Thanks for posting!