Hi Gidget,
You can have a number of overlapping disease involving immune systems so it sometimes take years and a lot of tests and even then, it can be tricky.
Currently, my dx is primary Sjogren's, SLE and Atypical Grave's disease. (which I believe is real root of the problem as my symptoms did not raise their ugly head after I had an insect bite on my face that turned black and took many months, lots of prednisone and periodic antibiotics to stop the infection)
I was given the Sjogren's dx and I have not heard of either of the two tests you mention (lip biopsy or the eye test). But, my saliva issue hit me very hard all at once, after 10 years of various joint and circulation problems). At the ER, I was given physical tests. They said I had angoedema. Basically though, no spit (I take pilocarpine 7.5 four times a day) If I miss more than two doses, I can feel my throat closing. I have to carry hard candy or gum at all times. I also have ulcers in my larnyx that are just now calming down. I will never take saliva for granted again.
Best,Carly
I was diagnosed on symptoms and blood tests, and the Swchwermer test for dry eye several years ago and was prescribed plaquenil. At the time it was an "accidental" finding, because I had been referred to a rheumatologoist for joint pain. I was given all the Mayo Clinic tests and what they found was Sjogrens. I tried taking the plaquenil for a few days and didn't like the side effects so quit taking it. I was under the impression that it was only to treat the symptoms of dry eye and dry mouth, which I had learned to live with and it seemed to me that dealing with the symptoms was better than taking another medication and dealing with the side effects. Three years later I began having monthly attacks of what turnd out to be pericarditis. My PC had all the appropriate tests run and prescribed prednisone. The dosepacks cleared up the symptoms each time, but a month later it was back. I finally went on my own to a cardiologist who examined me and ran more blood work and sent me back to that same rhematologist. Turned out, the pericarditis attacks are also a symptom of Sjogrens. He told me that if I had taken the plaquenil I probably would never have had the pericarditis. Fortunately there was no damage done, but there could have been. Needless to say, I take my plaquenil faithfully every day now!
I was diagnosed with Sjogren's solely by symptoms and blood tests. I have not had the tear duct paper test or the lip biopsy. I hope I don't have to either.
Hi Gidget! I have been diagnosed with Sjogren's. They did my lip biopsy and the blood test. The doctor said the lip biopsy came back as "non-diagnostic" because they didn't get enough cells. They diagnosed me based upon my blood work and two VERY large parotid glands (the salivary glands located just in front of your ears). I'd ask for the blood test first, the lip biopsy is painful and I still have a small lump inside my lower lip. It does sound as though you may have Sjogren's. I don't have the bad issues with dry eyes, but my mouth, nose and skin are very dry.
Hi Gidget,
Love your name!
I have not been dx w/ sjogrens, but they did test me for that. The rhematologist tested my tear duct w/ a piece of paper type thing. It burned really bad, but I made tears and lots of them. But now my eye dr. is telling me my eyes are really dry. I have been dx w/ lupus.