I'm dreading it as I am already in so much pain, but they say its important to know if its sjogrens. I'm trying to plan how many days of smoothies and soups I will need and what to expect. Please tell me what your experience was.

You can find horror stories about any procedure out there, but the majority of people do just fine with the lip biopsy. Mine was simply numbing the lip, minor cut and removal of several glands (5-8---they are VERY small), and then a suture to close the wound...done. Maybe all of 20-30 minutes total...taking my history took longer then the procedure.

I was given an antibiotic (oral surgery does have a high risk of infection) for just a couple days as a precaution. I had NO days of soup and smoothies, as I could eat just fine. The first few days it was a bit sore, but nothing horrible and required no pain peds, etc. I didn't need it, but many find using ice packs helpful to reduce any discomfort and head of any swelling.

I did end up with a small bump at the site, and it is permanent, as is some very minor numbness at this site. But in no way does it affect my ability to talk, eat, drink, etc. I was told this is common. It's just something I've gotten used to and it is not bothersome at all.

I thought the procedure was easy and it ended up being positive, so provided me some much needed answers.

Hi

I too am being tested for sjogens, I believe my lip biopsy will be around May.

Not looking forward either!

Lou Lou

Was yours done by an ENT?

No, mine was done by a dermatologist at Johns Hopkins. It may seem weird for a derma to do it, but she had done MANY and was more than qualified. Typically, ENT's, oral surgeons and dermatologists are the ones that do lip biopsies.

The most important point is that they have done many of them and that the pathologist is qualified to properly read them (this is actually the bigger problem---lack of qualified pathologists skilled reading them). Hopefully you will get a detailed report showing the name and scale they used for grading the specimen. It's all about the number of foci (focus = an aggregate of 50 or more lymphocytes, histiocytes and plasma cells) in a 4 mm sq area. YOu must have more then one focus for a positive diagnosis.

I had a lip biopsy done at the Johns Hopkins Sjogrens Center two years ago. They numb the site and take several very tiny samples - all which took a matter of 10/15 minutes at most. I cannot recall what type of doctor she was.

The numbness lasts several hours similar to what happens after a dental procedure. You will not want to eat anything solid during that time so that you do not end up biting your lip without realizing it. By dinner time it had worn off and I was back to eating a normal diet. There was no residual numbness.

On a side note, my biopsy came back negative. I have since been diagnosed positively with Sjogrens based on repeated bloodwork results. Although considered the gold standard of Sjogrens diagnosis, the biopsy is not necessarily definitive since there are many variables that go into getting a accurate sample.