I need some advice, quick

[DeadGirl75]

My primary care doctor ordered the blood work for Sjogren's and it came back neg. I went to the ear nose and throat doc because my parotid was swelling so bad and after antibiotics and steroids, it went down. I've been on steroids since and the blood work came back from the rheumy that I didn't have primary Sjogren's, rheumatoid arthritis or lupis and she wants me to stop the steroids. Yet I had a lip biopsy that said I did have Sjogren's. I am utterly confused. What the heck is going on? I asked about secondary, but I'm not sure what to do here. My white blood cell counts have always been elevated and just when I thought I had answers, I don't. I still have a follow up next week and I need to know what or if I need to ask her about. I'm dumbfounded.

[SunshineDaydream]

Eek, it's my understanding that if the blood comes back negative but the lip biopsy comes back positive then you have Sjogren's. You might want to take your lab results to another doctor to get a second opinion.

[irish]

Being on steroids is a no-no when doing lip biopsies and blood work for diagnosis. I have been on steroids for years and will still run some positive blood work. I have been known to have some really, really high blood work even when on steroids so heavens only knows what it would be now without steroids.

The other thing is that blood work will change from time to time. It can convert from negative to positive or from positive to negative at any given time. Blood work in autoimmune disease is very fickle. Do not panic. I would tell your docs to research seronegative Sjogrens and treat your symptoms. You should not have to suffer and docs should be treating you with or without a diagnosis. Hope all will improve for you. Irish

[anita]

Being on the steroids can affect your lab results and /or lip biopsy.  but usually it causes them to be negative (as the steroid reduces inflammation).  So if you have a positive lip biopsy (with or without steroids, I would believe it vs the labs done while on steroids.

Also ,it is very possible to have negative labs yet positive lip biopsy...as I have always had negative labs yet a very positive lip biopsy...same with MAT51 here and I'm sure others.  being sero-negative happens to at least 40% of those with Sjogren's.  So find yourself another rheumy that is more up to speed on testing and being sero-negative.  YOu might want to be re-tested after being off the steroids for several weeks.

[MAT51]

Yes Anita is right this happened to me as well. My blood work was entirely negative while on steroids but six months after coming off them it reverted to positive ANA but not the Sjogrens specific ones. So I had a lip biopsy and very strong result for Sjogrens. I've been told be everyone of my doctors that the lip biopsy result is 100% definitive. Not sure how your rheumy doesn't know this though?  Time for a change of doctors.

[DeadGirl75]

Being on steroids is a no-no when doing lip biopsies and blood work for diagnosis. I have been on steroids for years and will still run some positive blood work. I have been known to have some really, really high blood work even when on steroids so heavens only knows what it would be now without steroids.

The other thing is that blood work will change from time to time. It can convert from negative to positive or from positive to negative at any given time. Blood work in autoimmune disease is very fickle. Do not panic. I would tell your docs to research seronegative Sjogrens and treat your symptoms. You should not have to suffer and docs should be treating you with or without a diagnosis. Hope all will improve for you. Irish

I went back through the labs that I had over two years. The CBC's and all but one show a high white blood cell count. I've stopped the steroids (I was only on 5mg) and I see the doctor next Tuesday, I'm going to demand a retest. I'm putting down about being sero-negative. (What is that exactly? Blood test negative?)

She did give me a script for two months worth of steroids but I'm stopping now because I want answers. The last time I stopped, within days my parotid gland was swollen so bad my face hurt.

[DeadGirl75]

Being on the steroids can affect your lab results and /or lip biopsy.  but usually it causes them to be negative (as the steroid reduces inflammation).  So if you have a positive lip biopsy (with or without steroids, I would believe it vs the labs done while on steroids.

Also ,it is very possible to have negative labs yet positive lip biopsy...as I have always had negative labs yet a very positive lip biopsy...same with MAT51 here and I'm sure others.  being sero-negative happens to at least 40% of those with Sjogren's.  So find yourself another rheumy that is more up to speed on testing and being sero-negative.  YOu might want to be re-tested after being off the steroids for several weeks.

I had responded to Irish stating that I've stopped the roids and I see her again on Tuesday. My biopsy said I had stage two. I'm not sure how that works, but I printed off all the blood work labs I had online for two years. All but one show high wbc. She did say that my white blood cell count was high.

Yeah, I always thought steroids were anti-inflammatories and help with infection, so why would my wbc be elevated. It doesn't make sense.

[cccourt1942]

I have read posts regarding steroids affecting lab results since I've been on this board.  I know this many reports have to be true.  BUT..when I had my blood drawn initially I stated I had just finished a Medrol pack (4mg) about four days prior.  The rheumy said it made no difference.  And with me, it didn't.  My results, across the board, were highest possible from the labs to which they were sent.

ALSO...the lip biopsy is the gold standard. You have SjS if it is positive.

The primary and secondary is only a reference to if you have another AI disease--ordinarily Lupus or RA -> SjS.  Two AI diseases becomes secondary.

I wonder about the medical profession regularly.

[warmwaters]

You can move from having positive results to negative with the SS-A and SS-B tests. I initially tested positive, and that was true for about a year, and then the tests went negative. (Long story about why I was being retested.)

But a lip biopsy is a strong indicator. So is the fact that you are getting parotid infections - that's not a common infection.  You can get for reasons other than Sjogren's but when combined the fact you've got a positive lip biopsy, the clues are adding up.

Here's a link to an issue of the Sjogren's Syndrome Foundation's magazine. On page 3 there's a discussion of seronegative Sjogren's
https://www.sjogrens.org/files/tms/tms2012-10.pdf.  This might be a useful resource for your discussion with your doctor.

[Deb 27]

I am also seronegative but positive with the lip biopsy. At one time my ANA was positive but it went negative after being on prednisone and plaquenil for about 6 months. Antibody levels can come and go. 

I hope you get some relief soon. Sorry you have Sjogrens. At least you have an answer though.

[DeadGirl75]

Thank you, everyone. I printed off that article about seronegative, Deb. I'm taking that with me when I go. I have all the symptoms of Sjogren's and I'm not letting her off easy. I'll be going in armed with all this information and I'll demand treatment. Thank you for all the advice and support. If you have any more leading up to my appt on Tuesday, I'll write that down as well.

You guys rock.