Got my results from Sjogren's clinic testing

[marcatbak]

Well I finally met with the dr. to get the results of the testing I had done at the Sjogren's clinic in Feb.  He went thorough everything with me.  I am seronegative for the antibodies they look for in Sjogrens.  My lip biopsy was also negative for what they look for but I do have atrophy and fibrosis.  My eyes show extreme dryness and I produced next to no saliva in the spit test, both stimulated with gum and without.  Because I don't have the antibodies they look for he said I don't have Sjogrens.  But I do have, what they call is 'Sicca Syndrome".  He said that I am not making it up I really do have extremely dry eyes and mouth, also down below too, sorry to any males reading this.  Thing is when I google sicca syndrome what comes up is Sjogren's instead which has me puzzled and I know you can be seronegative and still have it but I guess he is a go by the lab results doctor. I asked if it was possible that I just wasn't showing the antibodies now and could later on and he said no that the antibodies should be in my blood.  Everything I have read said that you can be negative in bloodwork and still have it.  He did say to me that he thought for sure I had it and was surprised when my blood work was negative.  Said I was the second patient with the same results that he had  today.  Said to treat my eyes and mouth with the eyedrops and Biotene as I was told in August and Feb. so I will continue to do that.  Not much else I can do I guess.

[JoanElizabeth]

You can definitely have Sjogren's with out positive antibody tests. 1/3 of Sjogren's patients test negative. However if dryness is your only symptom the treatment would probably be the same with or without the diagnosis. However if you have other symptoms I would seek a second opinion and possibly a lip biopsy.

[marcatbak]

JoanElizabeth I did have a lip biopsy that showed extensive fibrosis and atrophy and mild non-specific inflammation.  There is no convincing lymphoid foci, germinal centres, lymphoepithelial lesions or granulomes. 

[Carolina]

Dear Marcatbak, the standards for a diagnosis of Sjogren's are very rigid because for clinical research, all the candidates must meet the same criteria.  However, we are not candidates for clinical research and we KNOW that Sicca is Sjogren's by another name.

If you have dryness, you can also ask for one of the oral medications that stimulates saliva and tear film, to some extent.
These are Salagen (generic = pilocarpine) and Evoxac (generic = cevimeline )  I have taken one or the other since 2002 and I have no side effects.  But of course we are often people who have side effects, so be patient with yourself.

One NOTE:  Many of us have complications of Sjogren's beyond dryness (which is bad enough) but the vast majority of those with Sjogren's/Sicca manage their symptoms and develop nothing more serious.  We do hope that you are one of those.  Don't worry when you read posts here.

When you need more information or support, we are here for you.

Welcome, and hugs,  Elaine

[SJSman]

Hello Carolina and JoanElizabeth,

I am confused.  After Marcatbak tested negative for SSA and SSB, and had a negative lip biopsy, why did her Doctor tell her that his meant that she did not have Sjogren's?

[keelton]

What does it mean when you have fibrosis and atrophy of the salivary gland ? What is the cause of not sjogrens?

[cccourt1942]

Keelton:  I was thinking the same thing.  I was treated (well, for the infections) for sialadenitis of my parotids for 5 years before I was dxed.  I was NOT dxed by that ENT.  He continued to call it sialadenitis....and told me more than once how common the condition is.  Because I would go to my GP at times (for an antibiotic) ...when I couldn't get in to see the ENT...he would ask me how many more times I had taken an antibiotic.  The thing is, during the in between times (infections) I suffered the painful events of the  duct blockages.  He would look at the # of times, and shrug and say "still not too often".  Well, I had an antibiotic no less than every other month + the blockages I could manipulate with massage and heat.  By the time I was dxed, I was told 5 had "hardened" (or atrophied) and one parotid was functional.  Of course, now I know functional doesn't always work when the T cells are so thick they can't pass thru the duct.  Painful.  Back to your question: I have read along, and I haven't ever found anything that would atrophy the glands like that short of chemotherapy.  That is quite common after chemo and/or radiation for oral cancers.  I do have a friend at present whose son is having chemo and radiation for lymphoma and his team built (fitted) him for a special mask where the beam will hit precisely.  Hoping to save his salivary gland on affected side.

If you find out, let me know.
Sjoldier c3