Lip Biopsy "possibly a sjogren's patient"....

[trc1962]

My rheumy ran down a lip biopsy from 2003 as he attempts to decide what is truly going on. The results he says look very much like a sjogren's patient but they don't check a couple of boxes...it was "mildly positive." All of this is very confusing. I wonder what is the criteria for actually diagnosing sjogren's? I will google it, but am sure many of you know a whole lot more.

[Jasper]

2003 is 13 years ago. The damage to your salivary glands may have changed/worsened since 2003.

Also, many lip biopsies are performed incorrectly. Others are interpreted incorrectly by an inexperienced pathologist. If the biopsy results are inconclusive, perhaps you need a new biopsy done by a competent ENT or oral surgeon and then read by a competent pathologist who is experienced in interpreting lip biopsies from Sjogren's patients.

If you have a biopsy, my suggestion would be to have the biopsy done at a university affiliated medical center. They should be experienced and competent in doing the biopsy and interpreting the biopsy.

Here is what Johns Hopkins says about lip biopsies:

Labial Gland (lip) Biopsy

"Sjogren?s syndrome is characterized by chronic inflammation of the glands that produce saliva and tears. An important method for establishing the diagnosis is to take a biopsy of the salivary glands in order to determine whether inflammation is present, and if so, its type and severity. The minor salivary glands just under the inner surface of the lip are the most accessible of these glands. (These are the 'cobblestones' that you can feel when you rub your tongue along the inner surface of your lower lip.) In performing a lip biopsy, the surgeon typically makes a shallow 1/2 inch wide incision on either side of the inner lip after numbing the area with a local anesthetic. Approximately 5-7 glands are then gently removed with sterile tweezers. .....

The lip biopsy has to be interpreted by a pathologist with special training. The characteristic biopsy finding in Sjogren?s syndrome is 'focal lymphocytic sialoadenitis' and is recognized by the presence of one or more tight clumps of lymphocytes (more than 50 in number) adjacent to normal gland tissue and surrounding a duct in a 4 square mm area of gland tissue. These clumps of lymphocytes are called foci and their approximate density in the tissue is called a 'focus score.' The lip biopsy may reveal other types of glandular inflammation and point to alternative diagnoses, such as sarcoidosis, amyloidosis or lymphoma."

http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/labial-gland-lip-biopsy/

Hope this helps.

PS: Edited to correct the punctuation errors which occur when copying and pasting into the forum post.

[SJSman]

Hello,

Lip biopsies can only be positive or negative.  There is no other result.   Therefore, mildly positive is an incorrect and indeterminate result, and clarification is required.  I suspect that "mildly positive" means negative in this case, however, that would absolutely need to be verified.

[keelton]

i just got the results of my lip biopsy, it says mild chronic inflammation lymphocytes and plasma cells, but no sjogrens diagnosis based on the criteria,   can that just mean that its early in the disease process