SS -A and SS -B

[Poppy]

Can anyone tell me if a strong SS -A and SS-B result would mean that the symptoms would be more severe?  My rheumy said that mine were very strong. They were 8.0 and he said that normal reading was 0.9.

[cccourt1942]

I would love to know the answer to this question.  I always thought:  no thinking about dx, positive. 

[Calli66]

Mine are both 8 and I don't have a severe form of Sjogren's. Not yet, anyway.

Calli

[Carolina]

My Duke Research Immunologist said:  "We use the tests we have, not the tests we need."  And "What happens to your blood in a test tube may NOT be what happens to your blood when it is in your body."

Yes, the tests exist and they can be very meaningful.  But they are only a part of the picture.

I have an Immune Deficiency.  There are THREE pieces to the picture.

1.  The numbers of my Immune System must show at least TWO immune factor deficiencies, which I have

2.  I also have to FAIL the challenge with a Pneumonia Vaccine.   I have to FAIL to achieve immunity from about 75% of the strains in the vaccine.  I failed 20 out of 21 of the strains of Pneumonia.

3.  But even qualifying on these TWO Tests I still may not qualify for treatment for my Immune Deficiency.  Because I have to SHOW a history and pattern of illnesses.  Which I do, so I have the treatment.

On my other forum (the one for Immune Deficiencies) there is a woman who qualifies on counts one and two.  BUT she doesn't get sick, so she doesn't get the treatment.  That seems sensible, of course.  But she could have any two out of the three and not get treated mostly likely.

Here on the Sjogren's site I am one of the few who doesn't have Plaquenil, Methotrexate or one of the DMARDs.   This is because I have managed my dry mouth and dry eyes, and by the time my health had deteriorated seriously, I was following the track of my Immune Deficiency.

There are some here, by the way, who have BOTH Plaquenil, Methotrexate and DMARD for Sjogren's, and have the IVIG for Immune Deficiency.

I still have trouble understanding how complex that can be!

This is my long way of saying that in most cases there are many factors to be evaluated and there often isn't a direct correlation between numbers and  severity of symptoms.

There is also not a clear way to know how any one person with Sjogren's will fare in the future.  Many cases of Sjogren's are treated successfully and do not appear to progress over time.

One study done in Japan that was looking at a totally different illness, found that a very high number of these elderly Japanese people measured positive for Sjogren's Syndrome and didn't even know they had it!

Over the years I have learned that each of us has to be Patient with ourselves, we have to be Persistent in finding way to help ourselves, and we have to ACCEPT that we may never totally understand what is going on and why we are the way we are.

Hugs,  Elaine

[eye2dry]

hello Poppy.

I read somewhere in some educational material that positive SSA & SSB meant you could have a more severe type of sjogrens

However my rheumy has never told me that when he informed me I had sjogrens with my positive ssa/ssb labs

The only positive benefit I can see of having positive SSA & SSB labs would be if ignorant people thought you were

a slacker...lazy.....hyperchondriac.....etc.......you'd have something official looking to show them from your doctor & lab


I wouldn't worry about it.....but if you can't help worrying....ask your rheumy.

Let us know what he/she says. If I asked my rheumy the question he'd say  "where in the h*ll did you hear that"??

tee hee


shelly

[cccourt1942]

 

[jackfrost]

Hello,

No, your Sjogren's will not be more severe if you have higher levels of SSA and/or SSB rather than lower values. 

In fact, there are no blood measures of the strength or severity of Sjogren's  (note: this is severity, not diagnosis)   - not SSA, SSB, ESR, CRP, nothing.  In other words, there is no way to measure the magnitude of a flare in the lab. 

This is a major problem for doctors and patients - for one thing, there is nothing you can measure in the lab to see how well a medication is treating your Sjogren's - nothing goes reliably down with proper treatment, and nothing goes reliably up with wrong treatment. 

ESR is an indication of general inflammation, but not of a Sjogren's flare.  I have terrible Sjogren's, a worst version that resembles MS, and my sed rate has never been above 50, and usually isn't even elevated during even the worst flares.

I am not talking about diagnosis here - that is a completely different topic. 

I am just talking about various things that can be measured in blood samples that people sometimes mistakenly think are correlated with the severity of a flare, or the baseline severity of your illness. 

This is an active area of current research - scientists are looking closely at cytokenes as possible reliable indicators of Sjogren's disease activity, but they haven't quite figured it out yet.

[Pbrain]

I don't know the answer to your question but it reminded me of research I'd done a while ago on Hashimoto's Encephephalopathy. A person has the autoantibodies, like TPO, but the actual level does not correlate to the encephalopathy. Doesn't make sense to me but just goes to show that there's a lot more that needs to be learned about autoimmune disorders! 

[Poppy]

Thanks everyone for taking the trouble to reply. It's certainly given me food for thought, all very complicated.