Lip Biopsy

[Spartan1]

Hi,

I was wondering if anyone had info on whether the lip biopsy is worth it. Is it accurate? Who should do it? Is there a lot of swelling/pain after?

Has anyone been to the John Hopkins Sjogrens Center?

Thanks for your help.

Spartan1 

[Maria3667]

Hi Spartan,

My reumy said a lip biopsy was not necessary to determine Sjogren's.
He said diagnosis by symptoms was sufficient.

[anita]

Spartan,

Yes I have been to the Johns Hopkins Sjogren's Center.  That is where my neuro/rheumy (Dr. Birnbaum) of several years is.

I have also had the lip biopsy.  I am sero-negative so it was a requirement for me to get a diagnosis.  The biopsy was very, very positive (said it was consistent with Sjogren's at end stage).  So I was glad I had it done.   I found the procedure to be quick and not painful.  The shot for numbing was the worst of it.  However, I (like many) do have some post procedure numbing and a small knot where it was done.   I (unlike many) don't think it's a big deal.  It's a very small area and not worth complaining about.  Others feel different and theirs seem to be more bothersome.

I know JH will require a lip biopsy.  They had the dermatology dept do mine and they have a specialized pathologist that reads the lip biopsies using the Greenspan scale (which is very specific in grading the tissue for a proper diagnosis).

It can be a difficult decision and yes there are some rheumy's that don't require it be done for a diagnosis.   If you have positive blood markers, then I don't know if it's really necessary.  However, JH is one place (like the Mayo Clinic) that requires certain criteria be met...and the lip biopsy is one of them.

Hope this is helpful.

[Butterfly]

I also had the lip biopsy performed. I was sero positive in the beginning of my journey but over time I returned to sero negative. My rheumatologist said it was necessary to confirm a Sjogren's diagnosis and he said it was necessary for disability claims. I had mine done at the Baylor College of Dentistry Salivary Dysfunction Clinic in Dallas Texas. I didn't have any problems with mine at all. The best advise that I can give you is make sure you are having it done by a very experienced doctor.

[amberjolie1]

Hello,

I'm also glad to have had it done because it was "100% consistent with Sjogren's", so I have no question about the diagnosis.  I also have slight numbness in the area still (but we're talking a very small area and I'm used to it now, so it doesn't bug me), and right afterward, my lip hurt pretty bad, but only really for a day.

The worst part of it for me was when they did it.  Normally I'm not too much of a suck for medical procedures, but the doctor had a resident who was learning the ropes, so as the resident did the procedure, the doctor talked him through it, and I guess it ended up being more graphic than I could handle, and I started feeling nauseous.

But as I said, I'm glad I had it done.  I think if it was just done without the running commentary, I would have been fine.