New Early Sjogrens syndrome profile blood test

[DarleneB]

I had the  normal testing for sjogrens  (SSA and SSB), IMMUNOGLOBULINS
C-REACTIVE PROTEIN, ANA, ESR, RHEUMATOID FACTOR.  All negative.  These routine tests were also done 5 years ago  and were negative.
This time my  doctor said I am sure you have sjogrens, not just SICCA syndrome.   He ordered the early sjogrens syndrome profile. ..and it was POSITIVE. 
It was sad when.the  nurse called to tell me I was positive  for sjogrens. .I was glad to know as for so many years I felt like a hypochondriac. ...going to the doctor with yet one more symptom.

[A Mom on Spin]

Darlene,

I'm sure it must feel good to at last have empirical proof of your illness.  Since you have been suffering for more than five years, I wonder what the "early" part in the blood test means.  Had you ever had a lip biopsy?

Liz

[DarleneB]

No lip.biopsy...
I will write what blood  tests are involved.
SALIVARY PROTEIN 1 SP 1 IGG.ANTIBODIES
SALIVARY PROTEIN 1SP1 IGA ANTIBODIES
SALIVARY  PROTEIN. 1SP 1 IGM ANTIBODIES
CARBONIC ANHYDROUS V1 CA.V1 IGG ANTIBODIES
CARBONIC ANHYDROUS V1 CA V1 IGA ANTIBODIES
CARBONIC ANHYDROUS V1 CA V1 IGM ANTIBODIES
PAROTID SPECIFIC PROTEIN PSP IGG ANTIBODIES
PAROTID SPECIFIC PROTEIN  PSP IGA ANTIBODIES
PAROTID  SPECIFIC  PROTEIN PSP IGM ANTIBODIES

[DarleneB]

The ones positive were:
SALIVARY PROTEIN 1 SP 1 IGA ANTIBODIES
CARBONIC ANHYDROUS  V1 CA VI IGA ANTIBODIES

[Tharrell]

Was it the Immco blood test that detects sjogren's earlier done by a finger prick?

[bluegardenia]

this is very interesting, i never heard of these tests. anybody here?

[DarleneB]

Not a finger prick...drew blood from antecubital area.  I am an.retired ICU RN....I had heard of these early tests.. my.new and wonderful rheumatologist from Rockford Illinois.  DR.ANDREW JASEK.  Said that I was a great patient to do this blood test...I had negative blood tests...but had severe SICCA . ...he said this new panel   the EARLY SJOGRENS SYNDROME PROFILE will show positive results years before the standard blood tests are positive.

[bluegardenia]

please what is antecubital area?

[quietdynamics]

Early Sjögren's Syndrome Profile
http://www.questdiagnostics.com/testcenter/testguide.action?dc=CF_SjogrenSyndrome

[DarleneB]

Antecubital is the area on arm you bend at the elbow...they draw your blood from a vein there...sorry...that was the nurse in me talking

[bluegardenia]

so its where they usually take blood? thanks

[DarleneB]

Yes....

[WhatYouSjo]

The 'Sjo' test is currently distributed by Bausch + Lomb and is usually administered by an optometrist or ophthalmologist. The optometrist pricks your finger and gathers the blood on a card which is mailed in. I believe the test can also be ordered as a standard lab blood test. The Sjo test lab analyzes the typical SS antibodies (RF, ANA, SS-A/SS-B) as well as 3 antibodies specific to the test. It was patented by SUNY at Buffalo School of Medicine and based on research done there which found at least one antibody in 45% of SS patients.

I have taken the test myself, and I unforunately tested negative for these novel antibodies (as well as the standard ones). Because the Sjo test also contains the typical SS bloodwork (RF, ANA, SS-A/SS-B), I see it as a reasonable alternative to regular blood testing, but there is little data on the novel antibodies beyond the original research done at SUNY at Buffalo School of Medicine, which patented the test. As a result, many rheumatologists do not put much weight into these antibody results (though I'm glad to hear that DarleneB has found support).

It has the potential to be a very useful test, as diagnosis has always been tricky for us SS patients. I would hope to see additional corroborating research on these antibodies carried out by other neutral research centers, which will help move it into the mainstream of SS diagnosis and treatment.

[irish]

THis is very interesting and hopefully the doctors will hear about it and use it. It also has a name that is not very hard to remember. Thanks for the info. Irish

[quietdynamics]

DarleneB.. I am so happy that this test was a benefit to you.
No one wants to doubt themselves, be in a place where 'hypochondria' comes as a dark specter, when we need to self-advocate.
One professional told me "only YOU know your body" and that became my mantra. I was lucky to hear that early.

Especially difficult with Sjogrens is when a medical professional is settled comfortably inside the "sicca box" and so dismisses other symptoms (similar to Lupus for example) which are in fact well documented.

In 2013 I stumbled upon an article about this test.. and posted it on the forum. I was so very excited for those who come after me/us, hoping they would not need to travel the time warp, emotional and physical roller coaster many of us have traveled.  I am linking to that post and the discussion for those newer to forum.
https://sjogrensworld.org/index.php?topic=22714.0

_____________________________________________________________________________________________________________

Can you provide update on how insurance covered cost for test. Co-pay? This would be most appreciated.
And keep us updated on how Rhuem will respond to test.
This would be a help to us.

I am hoping a Dx is on the very near horizon for you and a treatment protocol.