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Should I pursue a lip biopsy?

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Sjogren's Syndrome
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Posted 11/14/2015 3:12 PM (GMT 0)
Hello All,
I am new to this forum and looking for input. I was diagnosed with Lyme Carditis about a month ago after falling ill in the middle of September. I had a known black legged deer tick bite in April of this year. Before my Lyme Dx, my doctor was stumped and referred me to rheumatology as I also complained of dry eyes and mouth in addition to severe joint pain (right knee, hip, low back, both clavicles, thumb joints and right elbow). I have/had been also experiencing profound fatigue. The rheumatologist didn't think it was Lyme, rather an auto-immune disease (I have Hashimoto's, a brother with MS, and my dad has Crohn's).

In the clinic the Rheum did a Schirmer test which showed 3 mm of moisture in my right eye and 5 mm in my left and suggested the possibility of Sjogren's. In 2007 I developed a severely infected parotid gland which they could not explain and thought perhaps there was a 'stone' in it, but when I had the gland removed 5 weeks after onset of the infection the stone was gone. Since then I have had a very dry mouth (which I had attributed to the loss of the gland).

I had a follow-up with the Rheum on Thursday where I was told that ALL of my labs were normal (no lupus, Sjogren's, Scleroderma) and the RA test was 'normal' but that RA could not be ruled out. He said the only other thing that could be done is to do a lip biopsy to see if it is Sjogren's. I do have intermittent pain and swelling in my remaining parotid gland. He recommended a bone scan to see if I have cancer (due to the joint pain), but I reminded him I did have a DX of Lymes which also could explain the joint pain. Prior to the onset of this illness I would say I was fairly normal, though I did have a lot of fatigue, the dry eyes and parotid problems but was able to work full-time and function as needed (I have been off work since Sept. 16 when this all flared up)

Just wondering if this sounds like Sjogren's and if I should pursue the lip biopsy? I often wake up with bloodshot eyes (especially the right) and sometimes have to get a drink in the middle of the night as my mouth is so dry. Thanks,

Kate

Post Edited (ShmilyKate) : 11/14/2015 8:59:46 AM (GMT-7)

Posted 11/14/2015 6:21 PM (GMT 0)
Are your symptoms being treated? Will the treatment change pending the results of a lip biopsy?

Those are the primary questions I would consider before having a lip biopsy. We've had people who have had biopsies -- many have good results, but many are left with numbness where the biopsy was done. Note that they take a piece of flesh about the size of a pencil eraser -- relative to lip size, that is a pretty big chunk.

Personally, I would avoid the biopsy and start with the over-the-counter treatments for Sjogren's. Eye lubricant drops (Gen Teal, Tears Natural II), unmedicated. Biotene mouthwash, gum, and other dry mouth products.

Hope that helps some.
Posted 11/15/2015 12:34 AM (GMT 0)
Thanks Lynn,
I am not receiving any treatment related to the dry eyes/mouth. I use non-prescription moisturizing drops and nothing really for the mouth other than I chew a lot of gum.

I guess I don't even know what treatment would be if I were diagnosed with Sjogrens. Why do they biopsy the lip anyway...I mean its not like the lips lubricate anything?
Posted 11/15/2015 4:02 AM (GMT 0)
I believe it's more of a "cheek biopsy", and it's done to examine some of the saliva producing glands inside the mouth.
Posted 11/17/2015 2:16 AM (GMT 0)
Well, they call it a lip biopsy but they actually are removing some saliva glands from the underside of your lip. That's what they did for me. It wasn't too awful and it's how I finally got my answer after years of not knowing what on earth was wrong with me. I am seronegative with a positive ANA, high sed rate.
Posted 11/17/2015 3:00 AM (GMT 0)
So is it possible I have Sjogren's if all my auto-immune labs came back normal? Just don't want to pursue it if it is not necessary and will not lead to a diagnosis. The only thing the doc would not rule out is RA as apparently you can have that without seropositive labs, though I do not have red, hot joints, just painful ones (and swelling in my right knee that is like a bursitis...hard/crunchy/tender)

As I mentioned, I had a L Parotidectomy in 2007, so I produce less saliva and have since developed Frey Syndrome (my cheek and chin sweat when I chew or eat). My Schimer test was abnormal, 3mm in R eye na 5 mm in L eye.

Thanks,
Kate
Posted 1/16/2016 3:59 PM (GMT 0)
I did lip biopsy years ago and I still have a scar from it, it doesn't hurt not noticeable. It was negative, but I was diagnosed last year with it (sjögrens). Having a flare up. Just wish I knew why my hair falls out. shocked
Posted 1/19/2016 1:20 PM (GMT 0)
Hi. i'm from the fibro forum. I had the lip biopsy. I don't have sjogrens. Then just a couple of months lafter the biopsy I see an article from a journal...maybe it was called Muscles and Bones? Or Muscles and Skeleton? It said the lip biopsy is no longer advised. I am thinking they probaby said what is preferred, but it has been a couple of years so I don't remember. I used to get my email on Yahoo and signed up there to get notices of articles from that journal.

My lip still has numbness. For a long time it hurt to put a hot cup to my lip. I am a tough cookie...have even done some dental drilling under self-hypnosis one time...won't be doing that again soon, tho.. But when he started cutting I told the dr doing the biopsy that my lip was not numb from the medicine. He said something like: the nurse will be right back, and I'll get her to get some more to numb it better. But he felt like going ahead. I let him, cuz like I said, I am good at relaxing through pain. If that would freak you out, then stand firm, if you are not numb.
Posted 1/19/2016 7:18 PM (GMT 0)
My Lip Biopsey hurt like hell, and it had to be renumb 3 times, probably didn't let it numb up enough and when it came back down afters the pain knocked me to my knees and need to take an extra pain pill that day. I've also had loads of stuff done to me before, but this did knock me down for a loop!

Plus the results are suggestive and depended on the person that reads it, mine came back inflammed but not inflammed enough, which to this day baffles both the doctor that did the test and my RA doctor.
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