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.
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
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
The ones positive were:
SALIVARY PROTEIN 1 SP 1 IGA ANTIBODIES
CARBONIC ANHYDROUS V1 CA VI IGA ANTIBODIES
Was it the Immco blood test that detects sjogren's earlier done by a finger prick?
this is very interesting, i never heard of these tests. anybody here?
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.
please what is antecubital area?
Early Sjögren's Syndrome Profile
http://www.questdiagnostics.com/testcenter/testguide.action?dc=CF_SjogrenSyndrome
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
so its where they usually take blood? thanks
Yes....
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 (http://www.buffalo.edu/news/releases/2012/12/13854.html) and based on research done there which found at least one antibody in 45% of SS patients (https://www.researchgate.net/publication/232812061_Novel_autoantibodies_in_Sjogren's_syndrome).
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.
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
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
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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.
good info quiet dynamics, I relate more to lupus symptoms than sjogrens (altho we know pain and heat sensitivity and fatigue can happen in sjs )
do you or others know if its easy to find this test at any commercial opometric eye glass place? I would like to check my antibodies outside of my regular health care. in case the antibodies didn't show up this time I wouldn't want that in my record because still struggle with all the SJS issues but am curious to see what they are now 5 years after diagnosis
If sjogrens is caught early, what can be done to prevent loss of salivary glands?
KELL.....I don't know if treating early stops salivary gland destruction.
I know i f I forget to take my evoxac...I have no saliva when I wake up.
I tried plaquinel and had a terrible rash...doctor is going to try methotrexate.....
The other anti inflammatory drugs caused bleeding in my stools...one which worked like a miracle ..took joint pain away...diclonofac. ..sad I had to give up taking diclonofac
Just posting to say several people have tested positive like me using the early sjogrens syndrome profile blood test panel.
You are finally vindicated and if you want to you can tell some of the people "I told you so". I know the feeling. All the trips to the doctor, blood work up the ying yang and always this funny look that you get from the doctors. Even my hubby started to get a little negative. He believed I was sick but he told me why go to the doctor all the time cause they never do anything. Well, I got diagnosed with a positive lip biopsy and then the blood work was positive 2 years later. I did tell a few doctors I told you so.
I also had told people I wanted to know what I would put on my tombstone for cause of death---that is why I kept going to the doctor. Good for you. You did it and good for your doc who didn't give up either. Irish
DarleneB
Falling off a boat (normal life) and then being in turbulent waters (symptoms and quest to find cause, not having control of circumstances) then being tossed a life preserver (Dx) can be a relief.
There can be such a mix of emotions upon finally getting a Dx, a 'point of origin' for us to explain symptoms that affect us on so many levels.
A Dx is progress for sure! The monitoring is paramount for management, quality of life, possible progression. Remember that data shows extraglandular while in the lower percentile occurs. To have the possibility of less involvement via early treatment can be a major life difference for many.
Re: Genetics, it was suggested that during daughters GP check-up to have her ANA labs done. At the very least to establish a baseline for SJS or other autoimmune conditions. Humans are complicated and medical technology is evolving to help Drs and patients.
Early Dx and treatment have better outcomes according to studies/articles. Controlling/management of chronic inflammation and that affect on organs is paramount.
Irish.. my opinion of mortality information re: Sjogrens is that it is under- reported. Causes are usually " at time of death".. pulmonary, cancer, etc.
Myself I want Sjogrens documented as cause, if medical. The more CDC sees Sjogrens reported.. perhaps more funding will be allocated for research as with Lupus. We do benefit from the research done in Lupus and I just read about research to help chemo patients who have salivary gland damage ( a patent pending for a med).
Not just the ANA.. but a baseline early sjogrens syndrome profile blood panel. .I have no faith in tbe normal testing. ...
IRISH.. yes I feel vindicated after feeling like a kook...the insomnia,.the joint pain, the Hashimoto thyroiditis I think is all part of Sjogrens. ...the early sjogrens syndrome profile blood panel is really not new either...it.has been out there a few years...I wonder how many here who have suffered so long , not being treated cause the normal blood tests came back normal.
I am updating that my insurance paid 100% of the testing for the early sjogrens syndrome profile blood panel.