lip biopsy interpretation

[cinmac]

Hi, I haven't read this article yet but was thumping about online and came across a presentation by a doctor Fox regarding Sjogren's and he referenced it.  Apparently in J Rheaumatol, 2002 .29(5) pg 938-44 there is an article regarding lip biopsy that said that under a 2nd review the results of 50% of lip biopsies are changed.  WOW to all of us inconclusives or negatives out there!  Does anyone subscribe to this journal or have any insight regarding this?

I am going to see if I can access this article online anywhere but my eyes are so dry I can only search for short bursts so any info would be greatly appreciated.

cinmac

[JannaLee]

Wow!  That's outrageous!

It seems they should routinely review ALL lip biopsies!  I think 50% is not acceptable!

I've read a bunch of Sjogren's articles by Dr. Fox, he's an expert on our Syndrome.

Janna

[KYMOM]

Cinmac, Wow is right.  That is an incredible percentage.  I wonder why they were changed?  Let us know if you are able to find the article.  What do they look for in a lip biopsy that would make it that hard to make a correct determination the first time?
I keep a list of AI problems and medical terms next to my computer so I can look things up to better understand Sjogren's.  I
add Dr Fox to my list. Roxanne

[rnathans]

My biopsy was originally read as negative and since I was seronegative was deemed to not have Sjogrens despite symptoms that fit the dx. Then I went to a rheumatologist affiliated with a medical school and she requested the tissue sample and reviewed it herself. She found 1 and possibly 2 foci (whatever that is) and whereas officially you need more than 2 for a dx she felt very strongly that there was no other explanation as to why I should have any foci. She also says that a different tissue sample might have shown more ( or less) foci.

At the time I was very sick and she put me on cytoxan which really helped me a lot.

Ruth

[Epson]

This is the reason that I would never have a lip biopsy, it seems like a dice roll to me.

[cinmac]

Hi, I read the article and my understanding is that it is lip biopsys that are inconclusive that were sometimes changed after being looked at again.  If you are strongly positive, or strongly negative your results probably are accurate.  If they are inconclusive maybe it would be wise to ask for more than one pathologist to takea look.  They also say that a bigger lip sample might give more accurate results.  Ouch!  The one I had hurt for a year afterwards so I don't know how much bigger I would want them to go.  Mine was the first lip biopsy the ENT had ever done.  Hows that to inspire confidence?

I am going to find out if they kept the sample-it was 10 yrs ago-and ask them to read it again, rather than going through a new biopsy.

Good evening to all.

cinmac