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?
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'.
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
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
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.
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.
My SSA and SSB were 150 +
I have a positive ANA and am positive for SSB. My SSB gets higher each time I get my blood tested.
Liz
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
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
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.
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
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.
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.
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
SSA and SSB Positive. Don't know the lab values. Postive RF. Sun sensitive. Arthritis and polyneuropathy due to Sjogren's. The nurse told me at a recent appointment that they had thought from the beginning that I had Sjogren's. It took around eight months for the bloodwork to come back positive.
I have pretty severe sicca syndrome, but test completely negative for everything. (ANA, SSA/SSB, RF, etc.) Negative lip biopsy too.
It was sudden (within a few hours). Not sure how my glands completely destroyed themselves without any positive blood work or biopsy.
I'd definitely agree with the "bloodwork doesn't indicate severity" statement.
I've been having difficulty with the whole Sjogren's definition too. I have all of the sicca symptoms, but nothing that shows up as why. After reading the boards, I'm thinking there's another AI syndrome that some of us have -- sicca, but not caused by the destruction of the glands themselves. Some form of neuropathy, maybe? Perhaps some pioneering doctor will come up with a name for it. Remember, people had Sjogren's, lupus, etc. LONG before someone named them.
PL
I am SS-A and SS-B positive. I got the specialist to give me the numbers.
They must all figure their numbers different or something?
ANA (normal <1:40) = mine 1:2560 (I heard the stop counting after 2560.)
SS-A (normal <19) = mine 280
SS-B (normal <19) = mine 206
When they first diagnosed me (March 2009) they said my numbers were quite high but I didn't realize HOW high!
I also have Hashimotos and I get Reynaurds in the winter on 2 fingers.
Wow! Thanks for all the replies, everyone. I was trying to see if there was any correlation between vertain symptoms and certain antibodies, but it seems like there just isn't any kind of pattern to these things at all. My ANA was Speckles pattern if that makes any differnce. I guess I've got my science geek hat on again desperately trying to figure out the mechanics of this darn thing. I just wish there was a clearer picture of what makes this whole thing tick. If the Big wigs with multiple degrees and billions in grants to spend in research can't figure anything out, then who am I sit here and try to think my through it all. Thanks everyone. Jenn
Princess Leah, You do not know for sure that you don't have Sjogrens. Everyone of us are different. I had symptoms for years and dryness was not the one I noticed first. It was the aching muscles and joints and the balance issues. Many times a person can have some of the symptoms and not positive blood work and or lip biopsy and still have sjogrens.
Sometimes just waiting will give the beast a chance to show it colors. The dryness in my eyes was the last symptom that I got. Who knows what the future holds for this disease. When I had my lip biopsy it was ordered by my rheumatologist because I was having pain in the side of my face--turns out it was my glands. I had no idea cause there was no swelling.
Anyway, went to my ENT who is very good and he told me "there is no way that you have sjogrens" and I just said very loudly and firmly "do It"!!
You can imagine his surprise when he called me 3 days later and told me my biopsy was positive for sjogrens. You could have knocked him over with a feather. I didn't look that dry but yet my teeth were really bad and I had felt absolutely lousy for about 30 years at that point. I was in a flare the day I got married in 1964. So don't lose hope, there is more going on with your body,I would bet that doesn't show yet.Good luck. Irish ;D
I have a high ANA, SSA, SSB, Rheumatoid factor, Thyroid Antibodies, IgG, Smooth Muscle Antibody (highly suggestive of "autoimmune hepatitis"). In fact, during the abdominal ultrasound I had last week, the radiologist said I had a heterogenous liver and asked if I had hepatitis. I told him, "No", but my liver function tests are regularly followed due to the pos. Sm. Muscle antibody. Anyway, hope I don't have problems with my liver down the road. My rheumy said I have an "active" case of Sjs :(
As far as sun sensitivity, I do need to be careful to use sunscreen. But I am fair skinned and live in FL, so I would expect to need to be extra careful anyway. Oh, something strange did happen last month when I was at the beach. My husband pointed out that my fingers were red. Sure enough. They looked beet red....very strange. All returned to normal after I cooled off. I hadn't seen my hands do that before.
I'm both SSA and SSB positive, but have been doing pretty good lately, which is one reason I haven't been on this board much...I tend to come here more when I'm having bad days. I still hurt every day, but it's manageable for now, thankfully.