Hi,
I was diagnosed recently and I am still trying to get my head around it, I don't really understand what I have been told. Based on a mildly +ve ANA, -ve RA tests, -ve Ro/La, and a 0 on a schirmer's, my rheumy diagnosed me with secondary Sjogren's. He said this is good as secondary does not have the same number of complications as primary.
My confusuion lies here: It sounds to me like he is saying if it is seronegative, then it is secondary. I had not got this impression from this forum and other reading?
Secondly, he basically said it was secondary to my Hashimoto's, but when I said "but I have severe joint pains" he said that I also have polyarthritis (which apparently means arthritis of some kind in several joints, but we don't know the cause). Do is he saying he thinks it is secondary because he thinks I do have a connective tissue disease, or is he saying it is secondary to the Hashi's, or something else?
I am royally confused, but also getting a little scared because I have notice one of my fingers looks like it is deforming, and as far as I know that is not Sjogren's - is it?
???
Thank you for any enlightenment...
Leah x :)
Hi Leah, I have always took it that Primary is that there is no other involvement with any other illness or complaint.
So I'd be grateful too if anyone comes forward with a more precise explanation...
My main issues ..fatigue, dryness everywhere, with the right side ribcage involvement and upper centre back pain..
Certainly nothing like some of the poor angels I read about here..never the less I can and do get really down..
Dolly x
Leah, don't get scared. This darn disease won't kill you, but can make you miserable. One of the worst things is that not that much is really known about Sjogrens. I'm surprised at what some doctors have told me (inaccuracies) and some nurses have never heard of it.
I am diagnosed (2 years ago) as Primary Sjogrens. I am positive for anti-Ro, SSA and/SSB (forget) and have the speckled pattern. I forget what my ratio was, perhaps 1:160, not terribly bad but it was THERE and had not been before. I have super dry eyes and mouth and also much joint, muscle pain. One ophthalmologist at a U medical told me that I can't just have Primary Sjogrens. You have to have something else like RA, Lupus, etc. I gently told him this was not so, and he didn't like that and couldn't understand. I just smiled and dropped it. I, indeed, may have something else going on with all my fatigue, aches and pains. Cortisone shots, MRI bone scans, pain meds, SJS meds, the whole shot. Also, both my index fingers are becoming "deformed at the first joint from the nail. These have had a bump for years but lately, are just really knobby and red and sore. I don't think there is much to fix them. Do try and keep your hands and fingers nimble. I'm noticing my hands becoming more stiff. Lucy
Hi
My Rheumy told me the last time he saw me that if the Ro/La was negative (and it is) one is unlikely to have 'glandular involvement'.
I have loads of sore joints and they get worse if my thyroid is undermedicated. It seems to overlap with SjS. Also my bloodwork suggests lupus - so it can overlap too. Into the mix add osteoarthritis - it hurts!
My understanding was that if SjS went along with another AI disease it was described as 'secondary' - if you had it alone - it's Primary. Now - whether primary can then turn into secondary - i don't know.
Take care - Scottie :)
One more thing I think about is how often we have "other" stuff and don't know it. Being that it takes a norm of 7 years to diagnose SJS, who knows what else we have? I'm not looking for anything else, but know I'm involved with my whole body, plus the dry eyes and mouth. One doc just insisted I have some other disease too, but he was an eye doc and didn't know anything. Lucy
Comparing seronegativity and primary/secondary is like comparing apples and oranges. They are different "classifiers" or descriptions.
Primary simply means a "free-standing" disease process, without any other diagnosed autoimmune disease. Secondary means there are diagnostic criteria present for another autoimmune disease, usually Lupus or RA, but others are possible. Hashimoto's isn't usually considered, because it's so very common in SjS that just about every person would wind up being described as secondary. It's actually easier if you think of it as meaning that the SjS is secondary to immune system problems, as would be any other diagnosed AI, not that the SjS takes second place to RA or Lupus or whatever. Think of something like a bruise on your hand being a primary thing, but a bruise on your hand that is only one of the bruises on your body from a car accident is a secondary thing. There, I've probably made it even more confusing!
Sero +/- is a comment on how your immune system reacts to the disease, whether it produces antibodies or not. Antibodies can be produced in either primary or secondary. Either one can be mild to severe (except in secondary some of the symptoms can be blamed on the other disease). Either one can target the glands or extraglandular areas. It comes down more to the overall function of the immune system...whether antibodies are produced in the first place, and how fast they are destroyed and gotten rid of.
Hi,
Thank you all for replying to me, things are a lot clearer! It kind of confirms what I thought, which is why what the Rheumy said about it being secondary becasue the bloods were negative confused me so much...
I saw the GP today, and she showed me the letter he had written to her, and he doesn't actually say I have Sjogren's at all in there - so maybe I am not diagnosed after all...she seemed to think he was saying I had "sjogren's like" symptoms in association with the early stages of a yet to be identified autoimmune inflammatory disease... :( upside was she gave me some naproxen for the pain ;D
I think I am just going to give up on trying to put myself in a box for the time being, and just be glad I have things to help most of my symptoms...
Lucy - I feel the same - wondering what is going on in the background that just hasn't become dramatic/obvious enough to be diagnosed...
Leah x