Needananswer (do you have a less long name? ), I volunteered my time to the local lupus foundation for ten years. I learned a great deal about that disease, though I'm not an expert.

When you say "the traditional sjo markers," what are you referring to?

Have you had an eye exam to have the Schirmer's test to see how dry your eyes are?

I hate that they call it Sjogren's "syndrome" when it's actually an autoimmune disease. It sort of lessens the degree of severity of it. So many people think it's just a little dry eye. It affects so much more of the body than that!

Have you thought about getting a second opinion from a more experienced rheumatologist (of course, not knowing how experienced yours was!). I have no idea where you live, but if it's in the US, you can probably find another one to consult with. This is nothing to mess with.

If, on the off chance, you have or are getting lupus, you might have kidney involvement. Not to scare you, but I have known patients who die due to kidney disease. Has anyone checked how your kidneys are doing? With a UA and/or a comprehensive metabolic panel?

http://emedicine.medscape.com/articl...view#aw2aab6b3

Some patients with Sjogren's don't get lupus, and don't necessarily have positive antibodies! A good rheumy knows that and will look at the entire clinical picture.

You're not fighting an infection, right? So that couldn't be the reason for a low C4! Sometimes you really need to break things down, in order to "help the doctor." Why do they need so much help?!

Do you have joints that hurt or are swollen? If your rheumatoid factor is high, why hasn't anyone addressed that?

Let me know what else I can do to help you. I got to know a variety of lupus and Sjogren's patients at the forum, and it hardly matters if they have one or the other or both. You need help and treatment. Waiting is dangerous for you! Any autoimmune process needs to be addressed as soon as possible.


Annie


A lupus forum where you can talk to others with the same issues.

http://www.thelupussite.com/forum/fo...14027261082083

And this site was interesting, but not a busy one.

http://www.samvslupus.com/2011/03/lu...c3-and-c4.html

And a more complex article.

http://rheumatology.oxfordjournals.o...t/44/1/89.full

Diagnosis and Treatment.

http://www.aafp.org/afp/2009/0315/p465.html

And while you haven't been diagnosed with lupus, this is a great pdf.

http://www.lsnflorida.org/files/nurs...care_guide.pdf