Sjögren’s lip biopsy testing

[Blue-eyes79]

Hi everyone, My GP and I think I may have Sjögren’s syndrome, but so far have been seronegative for antibody testing. I would like to pursue other forms of testing such as a lip or saliva gland biopsy, but have no idea who to see to organise this? I could travel to either Sydney or Melbourne if needed. Thanks for your help!

[JoanM]

Hi, I had a saliva gland biopsy over a year ago to confirm degree of damage from Sjogrens - on reflection I would not have agreed to this as I had a very poor experience. The surgeon that performed op assured me the procedure was simple and it would be a little uncomfortable but once healed would not have any nerve damage etc. But I do have nerve damage. And the procedure was hideous, under full anaesthetic with bottom lip a mess but was assured all would be well. I rang surgery after 6 months as I had numbness in area still and was assured again it would improve with time but it hasn't. I have learned to tolerate the sensation in my lower lip and it does vary from day to day, however I deeply regret going through with it. My rheumatologist was not happy either - his recommended surgeon was unable at the time to see me and I did shop around..😒

[Blue-eyes79 in reply to JoanM]

Sorry to hear you had such a bad experience. Did it show anything?

[JoanM in reply to Blue-eyes79]

Yep, showed degree of damage but I have been diagnosed with primary sjogrens for a few years - probably could have given this a wide berth.

[puffyface]

I’ve had a lip biopsy twice as past of a clinical trial and my rheumy did it both times. I had a local anaesthetic both times and although it was an uncomfortable sensation, I had no pain. The stitches fell out later that day and I had no nerve issues. I suspect it’s entirely dependent on the person doing to procedure. I was already diagnosed for ss by bloods and schirmer test...but I think it helps them diagnose if bloods don’t show antibodies??