How Often Do We Need Antibody Tests?

[meow]

Since my initial diagnosis a decade ago, I have never had another antibody test. My endocrinologist seemed surprised by this, so when I see my rheumy in June I will ask her if that's necessary.

Right now I am having a lot of hip pain,  and the weird arm muscle pain that made me seek treatment in the first place (besides utter exhaustion) has returned.

Is there any reason to seek a new antibody test? Does it even matter, once it's positive?

[Jasper]

Once you have a positive SS-A antibody test, you do not need another one. It is already positive so there is no need to get another one.

[Tharrell]

The only reason to do antibody testing is if your rheumatologist suspects you added another autoimmune disease. I imagine your doctor does regular blood work on you like cbc and cmp with the occasional inflammatory markers.

[SjoGirl]

Well, my experience differs from that of others, my rheumy's typically test once a year or if I am having what appears to be a bad flare. As well, my SSB has swung back and forth from positive to negative and from high to low (but my current rheumy says that a higher score is not indicative of amount of disease activity).

My PCP and rheumy both say SSA and SSB can swing in different directions. Being negative does not mean I don't have SjS, my rhuemy says such swings are typical with AIs.

[eye2dry]

My rheumy doesn't test again after you get positives......he
said it's a waste of money and time.


It was early in our getting to know each other phase in fall of 2010
and I asked him that same question.
he looked at me like I was crazy and said

" I didn't make a mistake...... your labs are positive SSA....positive SSB
with high RF...very high ANA.....high sed rate.......(etc).....you have
sjogrens....accept it, "


He was a real charmer in the beginning.

shelly

[irish]

My immunologist doesn't do a lot of testing for antibodies but he does some other blood work off and on. However, he does do antibodies when new symptoms come up. Such as....some months ago I saw ENT and my left ear was losing hearing. I am already deaf in my right ear so my ENT told me to head to the immunologist...they know each other.

So, he checked antibodies and I had 2 antibodies that were specific for causing hearing loss. I mention this because your doc may want to check some other blood work antibodies to see if yo are having any other issues because of your hip pain. Goes with the territory. Good luck. Irish

[cccourt1942]

My diagnosing rheumatologist wrote me an Rx for "handicapped" status for my vehicle.  I noticed he had written for "life."  When I asked him about it, he said "You have sjogren's, it's not going away."  He is also the one who told me I never had to be tested again.  I've had a couple of rheumys since him, and neither practiced re-eval for SjS.  As Irish noted, blood work is done, but for normal blood work plus checking for other probs.
ccc

[gurs]

my rhuemy checks mine every 3-4 months to see if there are any major flucuations, as well as testing the antibodies for other things, such as scleroderma and other autoimmune conditions. I think its a great idea. I think maybe yearly would be fine..I guess it depends on your health and any new symptoms etc.

Gursie

[A Mom on Spin]

My daughters' pediatric rheumatologist routinely ran the while gambit of bloodwork every Six weeks so I was surprised when my current rheummy didn't check for developing overlapping illnesses, but I think that the older you are, the less likely it becomes.

At any rate, I just returned from the Sjogren's Center at Johns Hopkins where they took 20 vials of  blood and I seem somewhat comforted by the fact that he's checking for everything under the sun!

Liz

[gurs]

Im 53 years old now and have had Sjogrens since I was a small child, and over the years, things changed alot. Developed more autoimmune conditions such as lupus and also have some immune deficiency issues. As we know, alot of autoimmune conditions resemble each other so sometimes what a doc thinks is RA might be sjogrens or something else. I think the older we get, the more testing we need. Treatment also may vary according to the disease, and best to start this asap if you know what your dealing with. I know years ago the plaquenil slowed the progression down, because when I went off of it, I got very ill and all my neuro issues got even worse.

Gursie

[eye2dry]

 

I see my rheumy in June, I am going to ask him to retest my (which all were positive)
SSA...SSB...ANA...RF....ESR, maybe after 7 years he'll say yes.

I do know when I was hospitalized for 3 days last year
(they thought I had a mesenteric blood clot) the hospital
checked for dsDNA which was negative just like it was back in
2010. so no Lupus for me ...now

shelly

[irish]

If a mesenteric blood clot occurs or other clotting is a problem there should be blood work done, I would think, for the autoimmune clotting diseases. Right now I just went blank, but I bet there will be some others who will show up and inform you. I hope you don't have this. Good luck. Irish

[Linda196]

Irish, are you thinking of Lupus anticoagulant,  anti-beta2-glycoprotein I, antiphospholipid Antibodies and anticardiolipin antibodies?

Eye2dry, I'm wondering if, in testing the dsDNA, someone thought it would also indicate Lupus Anticoagulant? You don't have to have Lupus to have LA.

As to frequency of testing, my rheumy does a yearly antibody panel, mostly to see if anything new has appeared. As other have mentioned, once you show positive antibodies for Sjogren's, you have it and always will, regardless of the results of later testing.

[Nymph]

They re-test me for antibodies every few years. With anti CCP there is a phenomenon where it will be positive for years, then spike up before developing clinical RA. I assume that is what she's watching for. I can see the logic in not retesting if someone has already had +SSA/B, if a different level of antibodies does not change dx or tx.

[A Mom on Spin]

As I look at the results from my recent blood drawn at the Sjogren's center at Johns Hopkins I can see that I am positive for some antibodies I wasn't before - namely ccp and a scleroderma antibody too.  All results aren't in yet so I don't know what else will pop up.

Yes, my SSA and ANA will always be positive, but I think we should have annual testing (at least) for overlapping diseases.  Why are there no standard protocols for that?

Liz