Author Topic: I've Tested Positive for the SSA antibody for "6" Years, Now It's Negative?????  (Read 5037 times)

Waldop

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I'm SOOOOOO confused I don't know what to do!! I've tested positive for the SSA antibody for the past "6" years, and for the very first time, my primary tested it again most recently, and now it came back NEGATIVE!!  My Rheumatologist told me that that will ALWAYS be positive, but it will fluctuate up and down. I don't know what to think.  I have an appointment with my primary next week, but now I don't even know if I can consider myself afflicted with Sjogren's.  It's not that I want to be, mind you.  It's just I feel as if I'm on a roller coaster and can NEVER get off!!!  :'( :'( :'( :'(  Has anyone else ever had this situation??

Thanks.

Barrie

anita

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Barrie,

I bet you are confused!!

It specifically states online that once a person develops the autoantibody, it may fluctuate (like your doc said), but you will continue to have it.   After 6 years of testing positive, it certainly wasn't a test error.  That's makes me believe that either this test was an error, or some medicine your were (but not now) taking gave the test a false positive.  I'm thinking that it's an error and you should be retested.

I don't know if you are aware, but there is a site (labtestsonline.com) that has lots a great info about all lab tests.  They even have a feature to ask questions.  However, they limit the number of quetions they take per day, so you'd have to check back if their quota is already met for the day.  You might want to ask them about factors that could alter this particular test result.  Or if certain medications can give false positives.  Look up the ENA test (where the SSA test is included in the panel) and select the tab for Ask Us.

Good luck
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

Waldop

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Anita,

You're absolutely right about this particular blood test was performed incorrectly, or it was a false positive.  Lord knows, I've had my share of those.  It wasn't like it was one or two tests. I will say that the SSA antibody was never that high in the first place. I don't know if that's significant or not.  In addition, once again, my sed rate is EXCEEDINGLY high!!  It's well over 100 mm!!

Thanks for the info about certain medications might being the culprit. All in all, I'll have to have it retested. I have a feeling my primary is going to want to take a lip biospy. You'd think after six years I wouldn't have to go through this again!!

Nevertheless, I thank you for all your help.

Barrie
« Last Edit: June 30, 2010, 03:23:02 PM by Waldop »

eyeamdry

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I think my tests are normal after being on meds.  I did have positive blood results before being diagnosed.    I'm guessing if I stopped the meds I;d have the positive tests again.  No thanks.   Lucy

Scottietottie

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Hi Barrie  :)

My bloods returned to normal after taking Plaquenil. The rheumy says that proves its working and to keep on taking it. He didn't say it meant I was 'cured'.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)


Never do tomorrow what you can put off till the day after tomorrow!

Waldop

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Hi Barrie  :)

My bloods returned to normal after taking Plaquenil. The rheumy says that proves its working and to keep on taking it. He didn't say it meant I was 'cured'.

Take care - Scottie  :)

Hi Scottie,

I don't take Plaquenil. I took it at one point, but that was when I was with one particular Rheumatologist. My present Rheumatologist thinks Plaquenil is more effective with Lupus, not Sjogren's. Truth be told, I think he's a bit batty, but who am I to say that, right??? ::) ::) ::) ::)  I'm only afraid now they'll say I don't have it, and I'll be back to square one.  I KNOW I have Sjogren's. I can see that from the lack of saliva in my mouth.(not to be too graphic)  Sometimes doctors go only by test results and that can be misleading.

Anyhow, thanks for your input.

Barrie

magistramarla

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My latest blood work was negative for SSA too, after being positive before.  I take both Plaquenil and MTX, so I'm thinking that the meds must be working.  Like you, I sure hope that this doesn't prompt the doc to proclaim me "cured" and stop prescribing the meds.  I don't trust my new rheumy here in Ca as much as I did the one that I had in Tx.
Marla

Waldop

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My latest blood work was negative for SSA too, after being positive before.  I take both Plaquenil and MTX, so I'm thinking that the meds must be working.  Like you, I sure hope that this doesn't prompt the doc to proclaim me "cured" and stop prescribing the meds.  I don't trust my new rheumy here in Ca as much as I did the one that I had in Tx.
Marla

Marla,

I wonder if one takes Pilocarpine long enough, it makes the blood work normal???  Sounds like you're having probs with your Rheumatologists as well.  I swear sometimes I think some of these "so called" doctors get their licenses from a Cracker Jack box!!!  Florida is no better when it comes to good doctors!!!  >:( >:( >:(  Sorry, I'm in such a state tonight...

take care

Barrie


Scottietottie

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Hi Barrie  :)

When Sjogren identified the syndrome that then got named after him - there were no blood tests for it. He identified it by symptoms. Sometimes I think docs rely on tests too much.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)


Never do tomorrow what you can put off till the day after tomorrow!

inga

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So here is the song and dance....

You are negative, so you are fine, because if you were positive you would be sick....

So you turn positive, then you are fine because it was a lab error.....

So you turn very positive, again, and then, hmmm, ok, maybe you are sick....but it could be fibro

Then you stay positive and turn an ominous pattern or get a positive ENA

Than THAT must be a lab error...
.
Then it happens again...

Then that must be disease and they start to treat you....

Then you go negative, and, Cripes!  How did YOU pull that big old farce off on them and fool them into thinking maybe you were sick when you looked so darn good!

I wish I had gone to med school and specialized in rheumatology where I could pick my patients and tell the rest of them they were insane....and get paid $150,000 per year for this nonsense.

If your SSA or SSB was positive twice....You HAVE the condition and unless it is curable, then you are not cured.  It was a 'laboma'...a big boo boo.

Waldop

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Hi Barrie  :)

When Sjogren identified the syndrome that then got named after him - there were no blood tests for it. He identified it by symptoms. Sometimes I think docs rely on tests too much.

Take care - Scottie  :)

Scottie,

You're 150% right about doctors relying basically on test results and not the symptoms brought to their attention. Truth be told, it's suppose to be a combination of both, but more often than not, the doctors stick to what's in front of their faces!!

Anyhow, thanks...

Barrie

Pegasus47

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Well, I don't know what to say.

I have seen a teenager with lupus, positive ANA all along, and all of a sudden when she was 21, she  no longer has lupus, ANA titer negative, and carried on a happy life. 

I don't know if that is possible with SjS.  Teenagers sometimes are still developing and their body can adjust to the growth cycle.  Most likely than not, most lupus patients get worse.

Not very encouraging news is it? 

Pegasus

Waldop

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So here is the song and dance....

You are negative, so you are fine, because if you were positive you would be sick....

So you turn positive, then you are fine because it was a lab error.....

So you turn very positive, again, and then, hmmm, ok, maybe you are sick....but it could be fibro

Then you stay positive and turn an ominous pattern or get a positive ENA

Than THAT must be a lab error...
.
Then it happens again...

Then that must be disease and they start to treat you....

Then you go negative, and, Cripes!  How did YOU pull that big old farce off on them and fool them into thinking maybe you were sick when you looked so darn good!

I wish I had gone to med school and specialized in rheumatology where I could pick my patients and tell the rest of them they were insane....and get paid $150,000 per year for this nonsense.

If your SSA or SSB was positive twice....You HAVE the condition and unless it is curable, then you are not cured.  It was a 'laboma'...a big boo boo.

Inga,

You're hilarious!! The sad part being, it's absolutely TRUE!!!  I would imagine the field of Rheumatology one can really make a mint and not have to use one's brain cells!!  :o :o :o :o :o

I have to see my primary this week. I don't mind saying, I dread it!!  ::) ::) ::)

Barrie

Waldop

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Well, I don't know what to say.

I have seen a teenager with lupus, positive ANA all along, and all of a sudden when she was 21, she  no longer has lupus, ANA titer negative, and carried on a happy life. 

I don't know if that is possible with SjS.  Teenagers sometimes are still developing and their body can adjust to the growth cycle.  Most likely than not, most lupus patients get worse.

Not very encouraging news is it? 

Pegasus

Pegasus,

Autoimmune diseases are one of the toughest illnesses to treat.  It takes forever to first diagnose, then they sometimes have to revise that diagnosis. Nine times out of ten, the diagnosis wasn't correct in the first place. We don't have a disease where one test will dictate what the situation is. I find this one of the most difficult scenarios that I have to deal with.  It's because of this fact, that a lot of doctors treat patients like they're hyponchondriacs!!  >:( >:( >:(

Barrie

blacksox66

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Hi Inga,
For nearly 6 years, i have had 5 ANA & ENA tests done they all say i have autoantibodies for Sjogrens and SSA test positive, and yet not one of the Dr's that i have seen has ever said or mentioned Sjogrens to me, if i had'nt got copies of my test results i would have never know.
Until my family Dr very casually said that it says here Sjogrens, but never said whether i have it, i have Discoid lupus so for the longest time i put all my symptoms down to possibly having SLE, but the tests for that have come back negative. i'm at the eye Dr tomorrow so i'm asking him if he can test me for Sjogrens.