New Early Sjogrens syndrome profile blood test

[wendyoh]

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

[Kell]

If sjogrens is caught early, what can be done to prevent loss of salivary glands?

[DarleneB]

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

[DarleneB]

Just posting to say several people have tested positive like me using the early sjogrens syndrome profile blood test panel.

[irish]

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

[quietdynamics]

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).

[DarleneB]

Not just the ANA.. but a baseline early sjogrens syndrome profile blood panel. .I have no faith in tbe normal testing. ...

[DarleneB]

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.

[DarleneB]

I am updating that my insurance paid 100% of the testing for the early sjogrens syndrome profile blood panel.