What should I look for in my blood results to find out which one I am, if at all? Is it only blood where this dx shows up? Sorry to sound so un-informed, but I would be very interested to know. Do both present with different health issues of their own?
Thank you
Your signature shows that you tested positive for SS-A, SS-B and RF. Those are all VERY characteristic of Sjogren's and means you have autoantibodies in your blood that are strongly associated with Sjogren's disease.
There's a pretty good book called The Sjogren's Book, edited by Daniel J. Wallace, M.D. You may find it helpful.
I know a new diagnosis like this is overwhelming, but also keep in mind that severe complications (including a lot of the complications many of us here have) are not seen frequently with people with primary Sjogren's. Perhaps newer research will change these statistics, but according to the above book, only about 50% of people with primary Sjogren's have arthritis with their disease. I was shocked when I read that because my joints are always swollen and hurt so badly sometimes, and it seems like most of us here deal with the same thing!
If you listen to what the people on this forum have to say, the statement about not having severe complications with primary sjogren's would be challenged as false. I have never read that...just that primary and secondary only have to do with having another AI disease.
I, for one, have primary sjogren's and also have severe complications including neuro, cardiac, GI...and the list goes on.
You are sero-positive based upon your labs results.
Anita, none of the research I've seen says that severe complications do not occur, just that they are rare.
I don't think they are rare here.
Quote from: anita on November 18, 2012, 01:38:40 PM
I don't think they are rare here.
Perhaps not, but we're also not representative of the majority of people with Sjogren's. There's up to 4 million people in the U.S. alone with Sjogren's and we're a few hundred at most who have sought out a support board.
That is very true. I agree 100%. But the ones represented here for both primary and secondary commonly have severe complications...pretty equally based upon posts. I have not noticed an unbalance percentage of severe complications from one to the other...and normally a representative percentage would apply even in a smaller group.
Oh, I understand what you mean now - that the same risks for complications apply regardless of blood tests. That makes sense :)
Sort of. I believe (IMO) that if severe complications occur in 10% of primary sjogren's patients (just using this number as an example only), then I also believe that it occurs in roughly 10 % of secondary patients. Whether or not it's rare (and it probably is compared to the number of dry eyes/mouth only patients), is not my point. It's that it occurs in both primary and secondary somewhat equally.
If it was unbalanced and a higher percentage of secondary patients had severe complications, then I think we would see the same represented percentage here on this forum...and I don't see that at all. It seems pretty equal.
I don't know if that makes sense or not. ???
mshistory:- Having read your msg, I re-checked my bloods and they said ... high RF factor (153), high RO antibodies, but the LA ones were at the top of the scale of perhaps being normal! Obviously I am due for another check and will see what they come out at this time. So does this still mean that I am Sero-Positive? Sorry to repeat myself, but I would like to know, especially as I am waiting for my Rheumy to get back to me with what she considers to be a firm dx after my lip biopsy. If results come back negative I still want to ask her what is going on as surely what other than an AI problem could my bloods be pointing to!
As I am not presently taking any meds apart from pain killers, should I be seeking some to help with the pain I am getting from my joints etc? I don't want my RF factor to cause any problems with my joints.
Thanks for your help and advice
Quote from: Joy on November 18, 2012, 06:13:21 PM
mshistory:- Having read your msg, I re-checked my bloods and they said ... high RF factor (153), high RO antibodies, but the LA ones were at the top of the scale of perhaps being normal! Obviously I am due for another check and will see what they come out at this time. So does this still mean that I am Sero-Positive? Sorry to repeat myself, but I would like to know, especially as I am waiting for my Rheumy to get back to me with what she considers to be a firm dx after my lip biopsy. If results come back negative I still want to ask her what is going on as surely what other than an AI problem could my bloods be pointing to!
As I am not presently taking any meds apart from pain killers, should I be seeking some to help with the pain I am getting from my joints etc? I don't want my RF factor to cause any problems with my joints.
Thanks for your help and advice
Joint pain associated with primary Sjogren's is usually non-erosive; even with rheumatoid arthritis, about 15% of patients have non-erosive arthritis. More people with Sjogren's actually have a positive RF than with RA (as many as 85-90% of people with Sjogren's have a positive RF).
You are definitely sero-positive, but a diagnosis would be made in conjunction with symptoms. SS-A (anti-Ro) and SS-B (anti-La) are almost never found in healthy persons, unlike ANA which can be found in healthy persons at titers as high as 1:320.
SS-A antibodies are sometimes found in SLE (systemic lupus) but are more commonly associated with Sjogren's and subacute cutaneous lupus erythematosus (a type of lupus that causes specific skin rashes but rarely systemic complications).
With your blood work and symptoms, it would certainly seem to point toward a diagnosis of Sjogren's.
The first line of treatment is usually Plaquenil, which works as an anti-inflammatory and can help with joint pain, swelling, and fatigue. It is usually a safer alternative than long-term NSAID use.
I hope this helps :)
Mshistory, thank u soooo much for yr help. Every time I read the replies on this website, I realise just how much there is to learn about Sjogrens. I am pleased to hear that my high RF factor may not be damaging my joints, I have enough problems with them. My Rheumy did try plaquenil but I had a bad allergic reaction to it and had to stop taking it, not sure what other non-steroid med I can take before maybe trying the steroids which I would like to avoid if at all possible. This morning I am off to see an ENT specialist as I cannot smell or taste anything! ( It's been about a yr now!)
Thanks again for all your help.