Lip biopsy- Sjogren's
Posted , 8 users are following.
Hi everyone! I'm new to this page and I am curious as to if anyone has any information about this subject. I had a lip biopsy for testing (sjogren's ) yesterday, and my doctor had the hardest time finding enough of the minor salivary glands. He made an incision much larger than he wanted to but he will not send in less than ten. Otherwise it could come back inconclusive. Also out of the 10 only one was of normal size. The others were absolutely tiny. He said this was indicative of Sjogren's. I'm wondering if anyone has ever heard that before. He also said that if it came back inconclusive that he would not recommend another biopsy on me as there weren't enough salivary glands to be found. Any info is greatly appreciated! 
1 like, 16 replies
pam_87693 MariC
Posted
Hi Mari I'm Pam and I'm a member of the BSSA my Consultant Dr. E. Price is the President. If you live in the UK I suggest you join the BSSA. This is the charity to support those who have Sjögren's. I had the lip biopsy and mine was negative. Theis does NOT rule out that you have Sjögren's Syndrome. I assume you had a positive ANA that is an anti nuclear antibody test. If it was positive with a good titre say 160 or more then it does NOT mean you don't have it. The clinicians are looking for 2 markers Ro and La if they are negative it still doesn't mean you don't have Sjögren's all it means is while you have Sjögren's your less likely to be the 4-7% who might get non Hodgkin's Lyphoma. 40% of people with SS will be like me negative to Ro and La and have a negative lip biopsy too. I do hope this clarifies this for you. I run a FB group for my consultant for BSSA members and any in the UK who have Sjögren's syndrome. It's called BRITISH SJOGRENS/SLE/APS don't worry about the other diseases most have Sjögren's a few like me have Lupus too. I would think seriously about joining the BSSA as there are many local groups where you can meet up have a coffee and chat and there is an annual conference too.
MariC pam_87693
Posted
Hi Pam. Thanks for your very sweet response. I do not live in the UK. I live in Texas in the U.S. I do believe that the more support we give each other the better off we all are. All of my blood work came back normal but my great neurologist say that sometimes that doesn't mean a thing. I have polyneuropathy/ small fiber neuropathy everywhere. It even affects my blood pressure. I also have chronic dry eye, mouth, and sinus. Also trigeminal neuralgia. Restasis has been a God send for my eyes! I have had more epidural injections (everywhere ) than I can count. Ect....
I am just really curious about my doctors finding that there were hardly any salivary glands and the ones he did find were absolutely tiny and saying it could be indicative of sjogren's. I'm wondering if there is any validity to that. I will get my results in a few weeks. Thank you!
Tumtum1963 pam_87693
Posted
So Pam can you advise please - my ANA was 1:320 but my ENA was negative. My IgG and IgA were both raised and high inflammatory markers with previous diagnosis of seronegative, non-erosive RA. If my lip biopsy result shows negative and I don't have positive Schirmers or saliva issues - what is left to diagnose and treat? I've already tried and had allergic reactions to four DMARDs so I'm panicking that I'm going to be left on the high shelf if my lip biopsy is negative. My main symptom is a widespread small fibre neuropathy. Thanks
pam_87693 Tumtum1963
Posted
Oh dear! Well IgG is sadly seronegative Lupus so if the ANA was homogenous or speckled homogenous that means your positive for Lupus and IgA is a new test for testing mucous inside the mouth so as that's positive too it means you have Sjögren's as well. My ANA was the same as yours 320 and I have both.
Tumtum1963 pam_87693
Posted
Thanks so much Pam. It's not really too depressing, having lived for five years with an RA and sicca (plus hypothyroid) diagnosis because I've never felt comfortable with the idea that I have RA. Sjogren's feels like a far better fit to me so at last I have a positive ANA and the others to support my highly fluctuating inflammatory markers. Apparently small fibre neuropathy is very unlikely with seronegative RA and, as I've said, this and a burning mouth, are far worse to me than my arthritis. I would love to find a BSSA group nearby because so few people of my acquaintance (including many with RA) realise how destructive SJS can be as a primary disease. Even my old GP said she thought it was just a secondary thing to RA and Lupus.
deidra40034 pam_87693
Posted
Hi Pam,
I don't live in the UK, but like you, have both Sjogren's and Lupus as well. I did have the lip biopsy, and my results were positive. My doctors think I have had SS for a long time, it just took a very long time to figure it out. Mine is not just the dry eyes and mouth, my glands are involved, and now my liver, and adrenals and kidneys are as well. Also having skin issues, and peripheral neuropathy in both of my feet and lower legs, so walking is interesting to say the least. Have a hard time feeling where I am putting my feet, ear problems, and very off balance and have dizziness issues. Would be interested in your FB page though, maybe I could still benifit from some of the info?
aitarg35939 MariC
Posted
Hi Mari
I'm in Austin. We have a CenTex support group that meets quarterly in Round Rock. There's a bigger group in Dallas. You can check with the Sjogren's Foundation, located in Baltimore (@ Johns Hopkins), for other groups. We've had folks come from Banquete or Agua Dulce so I guess there's nothing in So. TX. Feel free to pm me if f you want to talk more about this.
All I know about salivary glands is that only my sublinguals can be provoked into working since at least the latter '90s. I only know that because I had terrible pain there, turned out to be stones (the size of fine grit). Only one ENT in a HUGE practice could figure that out, & he was the only one who knew that a long course of low-dose antibiotics might get them out. After that they sent me for some kind of non-invasive tests, don't recall the name. All y'all talk about lip biopsies and I just cringe. There are occasional perks to having a crap rheumo, lol.
MariC aitarg35939
Posted
That's funny! Thanks for the info. I'm glad there are places to get support from. I appreciate every piece of information I can get my hands on. My "journey started out with neuropathy issues. I tested positive for widespread small fiber neuropathy. Now we are trying to get to the bottom of the sicca issues. Chronic dry everything! My parotid glands (mainly left) drive me nuts all of the time. Kind of between an itch and a twinge that won't stop. Then it will swell a bit gor a little while and then calm back down. Weird. .. The lip biopsy wasn't bad until it was over! I'm glad he said never again. Thanks for responding, hope you are feeling ok.
aitarg35939 MariC
Posted
aitarg35939
Posted
Hey everybody: World Sjogren's Day is tomorrow. Wear blue and tell 5 folks a bit about ss, which doesn't discriminate by race, creed, nationality, socio-economic strata ... or sex, there are men with ss even though it sometimes seems it's just us women. And if you can raise some bucks for any of the Sjogren's foundations, more power to you!
(Apologies for posting this here but the system isn't letting me type on the "new discussion" page)
lily65668 aitarg35939
Posted
Tumtum1963 MariC
Posted
This sounds rather bizarre to me and in total conflict to my experience three days ago - where they wanted to remove between 3 and 5 glands and were happy with 4. This is standard amount required from what I've read. I'm in Scotland but have read John Hopkins info saying same thing of 3-5 glands. Never heard or read that about small glands representing likely SJS. The oral consultant overseeing mine dud tell young dentist to go for "that big juicy one just there!" So I'm thinking my four must have come in different shapes svd sizes.
They said to me that this is enough to get a clear answer either way. Result when I see oral consultant again in a month. Hope your mouth is recovering as mine is just starting to a little.
Tumtum1963
Posted
Ps sorry about typos - I'm used to editing but iPhone not letting me!
pam_87693 Tumtum1963
Posted
Tumtum1963 pam_87693
Posted
Yes I'm a member and the most recent magazine articles about neuro SJS really interested me and an really hoping to be rediagnosed when I see new rheum in late August. Will look for the FB page you mention. Thanks.