Author Topic: Anyone SSA AND SSB positive??  (Read 3487 times)

puccini914

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Anyone SSA AND SSB positive??
« on: September 10, 2010, 07:42:01 PM »
Hey Everyone.  I saw my Doc on Thursday and although he's completely right diagnostically all along he's not real comfortable about treating me when it comes to all these meds I'm on. He'd much rather leave that in the hands of the specialists.  Or as he says, "I's just an old country doctor, good thing we've got you a bunch of great specialists"  He's still wondeerful and still fills my pain meds.  I should've asked him about a good Gastro while I was there, but I did get a referal for an Ophthomologist.  Anyway, I asked for specifics on my bloodwork, as far as which of the antibodies positives I was, Becuase all I knew was that I was sero positive.  He told me both, he said SSA positive 8 and SSB was positive 16.  When I was talking to my lab tech today getting my monthly blood work, he's got psoratic arthritis and also takes Methotrexate.  When I told him my values, he said "Wow, that's really rare".  Soooooo, I thought, I'd throw it up here and see what you guys thought.  I always knew I was a rare species, but really, what da ya think?

inga

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Re: Anyone SSA AND SSB positive??
« Reply #1 on: September 10, 2010, 08:10:54 PM »
I am only + on ANA,  (apparently I have an unknown but pesky antibody---could be from Lyme) but my 'country doc' gives me my pains meds and I see her maybe 3 times per year.  All my other docs are specialists at a large academic center.....that would be neuro, cardio, GI, orthopedic and infusion clinic, and maybe the rheum...I am not fond of her and neither is my 'country doc' right now.

I think it is totally reasonable to maintain your relationship with your primary and have an academic or bigger center treat your AI.

It is in some ways comforting to have the 'country doc'.

Calli66

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Re: Anyone SSA AND SSB positive??
« Reply #2 on: September 10, 2010, 08:14:52 PM »
I am SSA positive "8" and SSB positive "8". Used to both be "6". I have no idea what the units are (8 of what?). I asked my Rheumy and she couldn't explain it and said it didn't matter--that it just means it's positive and that higher numbers don't mean "worse."

Calli

Catilee2

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Re: Anyone SSA AND SSB positive??
« Reply #3 on: September 10, 2010, 08:25:44 PM »
Hi,
  My SSA is 8 and my SSB is positive also but not as high as my SSA anymore . They both have been very high since I was diagnosed in 2000. the Rheumatologist repeats this test and other autoantibody tests every year to see how things are changing, if at all. I have a Dx of primary Sjogrens and also have peripheral neuropathy, Raynauds, and a rare disease that as of now causes more situations than the Sjogren's, but I still do almost all the things I use to, just not as often or as fast. Have a good weekend everyone.
Catilee 2

puccini914

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Re: Anyone SSA AND SSB positive??
« Reply #4 on: September 10, 2010, 08:27:16 PM »
Thanks, Calli, are you sun sensitive?  I was reading somewhere last night that it might be a SSB thing or something or a combo thing.  Don't remember it was kinda late.  

Inga, I have a Rheuma at Emory University Clinic, but my Neuoro is private.  Haven't seen any other yet, but I'm working on getting them set up.

Thanks for the replies.  I don't feel so freakish.

SLEEPY101

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Re: Anyone SSA AND SSB positive??
« Reply #5 on: September 10, 2010, 08:34:28 PM »
I am positive ANA 100+,my SSA is 150+ but have a negative SS-B.

I wish I would have a positive SS-B so I would finally be diagnosed;( I know it is not needed. But the Drs in my area seem that this needed.

Seeker

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Re: Anyone SSA AND SSB positive??
« Reply #6 on: September 10, 2010, 08:36:22 PM »
My SSA and SSB were 150 +
Every day is an adventure, waiting to happen.

LizM

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Re: Anyone SSA AND SSB positive??
« Reply #7 on: September 10, 2010, 08:57:17 PM »
I have a positive ANA and am positive for SSB.  My SSB gets higher each time I get my blood tested.

Liz

puccini914

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Re: Anyone SSA AND SSB positive??
« Reply #8 on: September 10, 2010, 09:34:17 PM »
By the way, Inga, it is nice to have a nice Country Doctor, but mine is much more like Dr House from the TV series, he's even a brilliant diagnostician.  However, he also sometimes shares his bedside manner and tells it like it is.  I love it, along with his somewhat acid tongued sense of humor which often borders between genius and totally insane.  So I  kind of laugh when he tries to call himself a simple country doctor, he's really anything but.

Ya'll, I keep wondering if these numbers really mean anything at all.  They tell us they don't, but they keep checking them over and over.  My ANA has ranged from 1260 to 640 to 380, and my RF has been 85 to 79 to 64 to 49.  So I really don't know what they mean.  I've never had a positive Anti-DSDNA, but I've many 6 of the 11 criteria for Lupus.  Everything except organ involvement.  Now I've got these SSA and SSB that my Rheumy tells me makes all the other blood tests useless because these antibodies can cause all kinds of false positives to show up.   

Now I'm really confused.  Maybe they made themselves show false positive.  Maybe the SSA and SSB are false positive because they made themselves false positive.  LOL

irish

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Re: Anyone SSA AND SSB positive??
« Reply #9 on: September 10, 2010, 10:44:32 PM »
Somewhere I have my reports with the info, but I was negative for years and years and about 2005 I was positive SSA and SSB at a Sjogrens study at our university. Then in 2006 I was positive again for SSA and SSB plus positive ANA. My lip biopsy was positive before my blood work was.

These docs need to get over being so dependent on the blood work. If you have the symptoms treat it. Last year I had blood work again and only positive SSB. So the blood goes back and forth and just having negative doesn't mean you don't have the disease. Chances are many times wer get tested and at that particular point in time the blood work comes back negative. I think it can really be a crap shoot. Might be that 1 week later would have positive blood work.

So, yes, it is rare, but maybe what is really rare is catching it positive! Good luck to all. May we be treated for our symptoms. Irish ;D

Carebear

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Re: Anyone SSA AND SSB positive??
« Reply #10 on: September 10, 2010, 11:08:24 PM »
Very true, Irish.

My Rheumy told me he didn't think I had Sjogren's because I had only one marker - SSA is positive.  But I have all the dryness, neurological symptoms, gastro problems...and on and on. :P ???

I read a report last night that stated "between 40% and 70% of patients with this condition (Sjogren's Syndrome) have a positive ANA test result.  While this finding supports the diagnosis, a negative result does not rule it out.  The frequency of autoantibodies to SSA in patients with Sjogren's can be 90% or greater."  Hmmm.

I will bring a copy with me on my next visit.

If I've learned anything from my readings on this discussion board, it's that 1 + 1 + 1 does not always equal 3.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Seizures, Cervical Stenosis.

Plaquenil, Synthroid, Restasis, Methotrexate injections, Keppra.

gurs

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Re: Anyone SSA AND SSB positive??
« Reply #11 on: September 11, 2010, 06:23:30 AM »
I have high ANA, and SSA-SSB always at 8.00...quest labs only goes up to 8.00..too bad, would be a good indicator of a sjogrens flare or something.

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Daisy1234

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Re: Anyone SSA AND SSB positive??
« Reply #12 on: September 11, 2010, 08:43:31 AM »
Yes positive for both and always have been since I got my first Sjs blood test.  Don't know what the actual associated numbers are as I've never seen anything but RO-SSA and RO-SSB positive (no numbers ever appeared on my blood test) with speckled pattern and a high ANA and high RF.

inga

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Re: Anyone SSA AND SSB positive??
« Reply #13 on: September 11, 2010, 09:25:08 AM »
The fact that some people have positive antibodies found on testing and others have none, could represent the possibility that the word, Sjogren's does not represent the same eitology for sicca.  It is not an editorial on the fact that every one with the Sicca issue is DRY, and that they may also suffer a variety of other maladies.

Or is this such a slow moving disease that it takes 3 decades to seroconvert?

I am utterly unattached to the term Sjogren's, and simply alternatively use the word, autoimmune and also, Lupus like.

If I could direct MY money, it would be toward finding additional antibodies, particularly ones that cause the PN and Dysautonomia....as well as looking at additional hereditary causes for PN.

Calli66

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Re: Anyone SSA AND SSB positive??
« Reply #14 on: September 11, 2010, 09:52:32 AM »
Puccin914-

Sun sensitivity.  I'm not particularly sensitive, but I have noticed a change from when I was younger (and presumably didn't have SjS).
Whereas I used to burn occasionally, now I don't burn, but I get raised red "pimples" like eczema (only in the places exposed most intensely) that hang around for quite awhile after exposure. They're pretty ugly.

Calli