Hi everybody,
I came across an article last night that discussed primary vs. secondary Sjogren's. It said that generally, those with primary SjS have more severe eye and mouth dryness. Those with secondary SjS usually develop SjS after another autoimmune disease and the dryness is typically less severe.
I was wondering how closely this applies to the Sjogies here. Do most of you with severe dryness have primary SjS? I was diagnosed with SjS with a possible lupus overlap. After reading this, I am thinking that, perhaps, I actually do have lupus too and that I've had it for more than a decade. I've had joint pain, anxiety and bowel issues and thinning hair for quite awhile now and just recently developed eye and mouth dryness. It usually doesn't bother me too much and is worse at night.
Have a great weekend! :D
I was dx 11 yrs ago with hashimotos. I have an outragous RA factor- its like 530 or something crazy. Im really wondering too if Im primary or secondary- the rhuemy never said.
I think it's really difficult to be specific about this. The process of this disease is so long-winded, and diagnosis so difficult, it's easy for both doctors and patients to come to misleading conclusions.
If you have the non-Sicca symptoms, it's unlikely anyone will identify SjS as the problem, at least until mouth and eyes catch up. An article on this site says about 80% present initially with Sicca symptoms, but the other 20% "begin with atypical presentations such as overwhelming fatigue, polyarthritis, peripheral neuropathy, an MS-like picture, fever, lung disease or tumor-like swelling of the parotid gland. When patients in this latter group seek medical attention, their sicca symptoms often are minimal or nil. Therefore, without that high index of suspicion, the diagnosis of Sj?gren?s can be easily overlooked."
http://www.sjogrensworld.org/how_do_you_diagnose.htm
I'd probably place myself in the 20% group; I've had dryness issues for many years, but they weren't terrible, I didn't connect them to the other problems, and wouldn't have flagged them up as being more than a nuisance, or of clinical significance until I became aware of Sjs as a condition, which coincided with the dryness getting hugely worse. I'm sure all my varied, long-term symptoms are explained by Sjogren's.
This subject is very interesting. I did not know there was a primary or secondary diagnoses. I was diagnosed with Rheumatoid Arthritis 22 years ago. I have had sinus issues and dental and eye issues long before that. Sojgren's was mentioned over the years but the Doctor never really seemed to concerned. I was diagnosed in 2006 with a lumbar puncture in 2006. I was having MS symptoms. It turned out to be Sjogren's. The Doctor did not explain much about it. So I have been reading articles and have joined this website to be better informed. This is a wonderful place to come for information and Support. Thank you everyone.
Happy Thanksgiving
Jules
I have had Hashimoto's for thirty five years and Sjogren's (diagnosed, anyway) for one. Does this mean I have secondary Sjs??? ???
Jules, Lori and Babs,
Since you have other autoimmune disease in addition to Sjogren's, your SjS is secondary - at least that's how I have interpreted what I've read about it. So - just wondering - how would you rate the degree of your eye and mouth dryness?
I don't think it can be secondary to thyroiditis, I think it's rheumatoid arthritis or other connective tissue disease. From what I understood from my specialist, the thyroiditis is part of primary Sjogren's.
That's kind of what I thought, Elizabeth. Not sure.
I have dry eyes and mouth that I would call moderate. I don't need plugs, and my teeth don't stick to my lips or anything. I drink at least 50oz of water a day, especially at work when I have to use my voice a lot. ;D
I don't think that anyone can know the answer to this question, not even doctors. Connective tissue disorders can mimic one another and it can take years to determine what you have. You can have one connective tissue disorder and slowly you will develope another with know one knowing it for years. This is the problem with getting a diagnoses, this is what my nephrologist told me on Wednesday.
My rheumatologists diagnosed me on the second visit with primary sjogrens. My symptoms are severe and a constant struggle to deal with. I am in a tremendous amount of pain in my face. My neighbor has RA and she has secondary sjogrens and she tells me that she doesn't understand the pain that I deal with because she says her sjogrens is no big deal, just an occasional nuisance. I have been healthy all my life and suddenly out of nowhere came this speeding bullet call Primary Sjogrens and it hit me square in the face and I hope and pray every day for help, for more answers,for more research to be done, more understanding doctors, better medicines, and a miracle. I am so very thankful though for this website. I peruse it regularly in search of answers. Season
Nans
My eyes and mouth dryness are severe. It has gotten really bad since 2005. I had to get a tooth pulled last month and had a bone graft done so I can get an implant. I only have 6 real teeth left. The rest are capped and I have some bridgework. I had tried a partial plate when I was in my 20's but I could not stand it. My mouth was dry back then I just did not know why. I have a lot of eye problems also. I had my upper lids cauterized and it has helped some.Jules
Jules - Do you have Primary Sjogren's?
I don't know. I have had dental and eye problems all my life.
When I was in elementary and middle school, I had ear infections and strep throat all the time.
I was diagnosed with RA in 1987. I had an episode where I was in bed for over 4 months. I would sleep 18 to 20 hours a day. I was only diagnosed with SJS in 2006. I had a lumbar puncture because the Dr thought I might have MS. So maybe I had SJS all along, I do know that it caused a heart mummer in 2001. It is affecting the connective tissue at my heart valves. So far it is not bad. I had a very good ultra sound this year.
Jules
I think the difference may have more to do with the underlying disease process, rather than how it affects us symptomatically. Primary SjS seems to have a strong correlation with certain viruses that are predisposed to infect glandular tissue (including the thyroid), and respond to some of the more unusual treatments differently. Which may be interesting for those making a living doing research on the subject, but doesn't necessarily translate into clear answers for the rest of us.
I have primary sjogrens - - my mouth can be severely dry (right now my lips are terrible) but I also go through periods where it's not unbearable. I have not gotten the dry eyes yet - - well, they're a little dry but my dr thinks it's just age because I can still wear my contacts and my tears are normal at this point. I also have the fatigue sometimes - if I'm not careful. I am currently dealing with tingling down both arms and legs but my neurologist thinks it's from my neck. I've been in PT for 2 weeks and taking muscle relaxants around the clock and it IS getting better so I'm hoping that's all it is and it's not the sjogrens but in the back of my mind I realize it could be that - I hold out hope that it's not because it seems if it were due to the sjogrens I wouldn't be getting this much relief from the treatment. Because my bloodwork (except for SED rate) isn't positive, my records say I have sicca syndrome - but he's sure it's primary sjogrens.
Voiceteacher
I have primary Sjogren's and my dryness isn't that bad. My issue is joint pain....I have positive SSA but the ANA was just barely positive 1:640 I think.
Actually, I wouldn't call 1:640 barely positive. That's a significant result. :-*
Jules, In your post you mentioned you have a lumbar puncture because the doctor thought you might have MS. Just wondering...is this problem or a procedure? Another question: as I am about 10 yrs older than you,have you had any symptoms that might be neuropathy related?
I seem to have had a lot of the same health issues all 'along the road' of life. Joy
Quote from: Babs659 on November 23, 2009, 04:06:37 PM
Actually, I wouldn't call 1:640 barely positive. That's a significant result. :-*
Hmmmm, maybe I'm confused. I thought 1:640 was the lowest possible positive, like a negative positive. It was over a year ago, so I could be mistaken.
I was under the impression that 1:160 was the lowest positive titer that was considered significant.
This is an interesting thread! I looked online for the 1.640 reading and seen one site that said it was high, but the readings below do not include it. So I am not sure where it would fall into the below readings. Mine was a positive ANA with a 1.160 speckled pattern, and with SS-B antibody of 25.85 amoung other high stuff when I was diagnosed. I have osteoarthiritis to, and I have not idea if I have primary or secondary the doctor never said. Sometimes I have wondered if my diagnosis is even correct. Does anyone know anything about Neutrophils, adn Lymphocytes tests? Mine always come in high on the Neutrophils, and low on the lymphocytes.
How is the ANA titer determined?
A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (flourescence) is the titer which gets reported. For example, if a titer performed for a positive ANA test is:
1:10 positive
1:20 positive
1:40 positive
1:80 positive
1:160 positive
1:320 negative
Happy Holidays!
Best Regards,
Sheri
>1:40 is the lowest "positive" result for ANA. It's possible to be healthy and have 1:40, but for people w/ symptoms it can be considered positive.
ANA can also change. When I was diagnosed w/ Hashimoto's, mine was >1:40. A few years later it was >1:160. When my first big SJS flare hit, it was >1:640.
Jules, In your post you mentioned you have a lumbar puncture because the doctor thought you might have MS. Just wondering...is this problem or a procedure? Another question: as I am about 10 yrs older than you,have you had any symptoms that might be neuropathy related?
I seem to have had a lot of the same health issues all 'along the road' of life. Joy
Yes Joy
I was having neuropathy problems with my right leg. I had gotten really sick the end of 2005. So my rheumy did some tests. One of them was an MRI. It showed I had plaque on my brain. That is what prompted my lumbar puncture. I am somewhat better now, but I still have a lot of issues and the neuropathy with drop foot.
Jules
Ah yes my ANA was 1:40 and so those results didn't prompt an appt with the Rhuemy until my SSA came back as an 88! Guess that was a definitive answer enough! ;D But I was told 1:40 could be normal in people with infections- so not necessarily is it considered a "positive" and at the time I was dealing with a parotoid gland that made me look like a chipmunk and an abscessed tooth! Right now they are considering me as "primary sjogrens' Though it is early in my diagnosis, only a couple months and if not for the abscessed tooth I prolly wouldn't have been diagnosed for years. My symptoms are not very bad at this time at least in the dryness- drinking water helps and eye drops once or twice a day. I am dry in other areas :-\ that cause some trouble and I have problems with my skin breaking out after showers or exertion or going in the sun.. lots of things! But for the most part my joint pain and partoid glands are the worst.
Becky