Lip biopsy - is it worth having done?

[LizPetillo]

I'm supposed to have one for the Dr. Vivino Sjogrens Study (Philadelphia) ... but I don't want to and I might make a fuss not to.  It's not going to change anything in my care and I don't really want to take a chance.  I'm tired of side effects and bad things happening ....

[Dry-No-More]

Cindi - I had a lip biopsy in 2002 as part of a Sjogren's study at UCSF. It was a minor procedure, but for me, I already knew I had Sjogren's (both SSA and SSB antibodies via blood tests to go with my chronically dry eyes and mouth). I don't think it's worth it if you already know you have Sjogren's. I agreed to it since it was part of the study, but I wouldn't want to do it again. Good luck!

[inga]

If you are fully seroneg, not even an elevated ANA, I don't think the lip biopsy will convince a rheumatologist.

If you have a +ANA, it may convince you and/or a rheumatologist.  (Hasn't me nor my rheum, but did my neuro).

If you have +SSA and/or SSB, I would not think that the biopsy is worth it.

If you have PN, good chance the sicca is coming from that.....and, your biopsy could be +, mine was.  I was neg. when my biopsy was +.  Later I seroconverted to +ANA....which still leaves me in no man's land.

[cmclien]

I guess after all the input I will not pursue the lip biopsy, it sounds painful and I don't want one more thing to complain about if my lip goes numb!

Inga, well I am not convinced for myself but I think your situation definitely would convince me with the positive biopsy and an elevated ANA.  My rheumy says lots of false negatives occur on sjogren's sensitive bloodwork.  He is treating symptoms and other parallel but distinct at this point disorders going on like the IC/PBS, reflux, IBS, dry eye syndrome, non-allergic rhinitis, hashimotos.  I asked him if they (rheumatologists) think they're all related and he said yes.   Its almost like its a bunch of un-related stuff going on but somehow I think and I have read literature on the theory that maybe these are all part of one disease/syndrome.  Is it SJS?  don't know.  I don't think my ANA has been tested..I will have to ask him.  That would give me a little more insight. 

I guess the bottom line is he has me on plaquenil to see if my eyes improve and if my hips stop hurting.  The only thing ironically that I have noticed in the first 2 weeks is my bladder feels better!  Strange?
Cindi

[Katmandu]

Cindi, it sounds like you've made up your mind, and I think you may be right. I didn't have a traditional lip biopsy. Instead, my ENT harvested 4 or 5 little salivary glands from inside my lower lip, right in the front. I went to his office, had local anesthesia, was done in an hour. I don't know if getting the glands from one spot is more valid than another. I just went with what the rheumy and ENT decided.
However, my biopsy came back negative, even though I have positive ANA, SSA and SSB. So, a negative biopsy wouldn't prove that you DON'T have SjS, and I think that may be what you're asking.
Kat

[cmclien]

Kat,
Wow I am surprised that your biopsy was negative with the positive ANA, SSA, SSB.  So you are right and I hadn't even thought it through to that conclusion but I guess I was in fact wondering would a negative lip biopsy mean no SJS?
Thanks so much for helping me see that.  Seems simple now that you have said it! 

I just emailed my doc to see if I can have just the ANA test done.  I looked on-line and I only see the ANA/8 panel but no where does it show an ANA.
Cindi

[eyeamdry]

I'm with Patze, and wouldn't do it again unless they paid me a million dollars and we know that would never happen.   Still numb after 3-4 years.

[Prairie Gal]

Cindi, you mentioned always drinking water, etc.  Before I got the SjS Dx, I was waking up at night with my tongue stuck to the roof of my mouth.  However, after almost 5 months on Plaquenil, my saliva production improved noticeably.  I still sometimes wake in the night because my mouth is dry, but it's mild compared to what it used to be.   I have a sip of water and use some Oral Balance gel to counteract this when it happens.

At the Sjogren's Syndrome Foundation's national conference this past April, Troy Daniels, DDS (from dental school at UCSF) stressed that drinking too much water dilutes one's saliva so it doesn't protect your teeth.  He recommended other ways to moisturize the mouth:  Oral Balance; gum sweetened with xylitol; sugar-free sour lemon candies.

I work in an office by myself and often chew on a toothpick; that stimulates saliva, but is not something one would do if you can be seen by others.

BTW, my blood work all came back 'normal', so the lip biopsy helped finalize the SjS Dx in my case.

Prairie gal