1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Testing Positive for Sjogrens with a Lip Biopsy

Posted , 16 users are following.

Jessa78
Jessa78

Hi everyone, I am 39 and I was diagnosed in 2015 with Sjogrens through a blood test at the cancer center. In April of 2014 I was referred there by my doctor of 8 years after my blood work came back with a very high white blood count of 23,000. A year and a half later I was seeing a rheumatologist for sjogrens. Anyway, after 3 years of rude abuse and severe osteoarthritis and having Supartz taken away from me bc I no longer receive traditional medicaid and had to choose the health plan and it supposedly won't pay for it, I've decided that I want a lip biopsy to be 100% sure I have sjogrens. Since may of 2017 I've been put off onto my rheumatologists new assistant who passes judgment onto me over my insurance, my weight (which if I could actually walk and get Mobile again my metabolism would work right, wouldn't be a problem) and the fact I'm prescribed pain medication by my doctor.) I've decided I want a lip biopsy to confirm it Yay or nay so I can dump him completely. Cuz let's face it, there's only one in my area and if I could travel 2 hours away, getting them to take my insurance would be quite a challenge. I live in WV so things here are very hard to get done medically. I have quite a list of medical issues wrong with me and the list seems to keep growing rolleyes

so my question for anyone willing to answer it is this, will the biopsy be worth it and how is the healing process? Thank you so much, Jessa

0 likes, 34 replies

34 Replies

Next
  • Charlin
    Charlin Jessa78

    Posted

    I'm not sure if it's worth it or not. I had it done and it came back negative, despite having a dry mouth and having SSB antibodies, my saliva was actually increased compared to a non-Sjogren's person. Healing process was fine. I had it done in 2014 and it took about a year of healing before I could not even feel the scar. I did not have any issues eating at all. 

  • Tumtum1963
    Tumtum1963 Jessa78

    Posted

    I had one 2 years ago and it was 100% positive - against everything I was being told by various max fax’s, dentists and rheumatologists. I think I’ve had it for a very long time so that’s maybe why mine presents now more like MS and also was misdiagnosed as RA in 2011. My bloods are ANA positive, elevated IgG and IgA, possible diabetes Insipidus with very high sed rate always and raised CRP. I have very painful burning lips and gums anyway so felt not additional pain or nerve damage from the biopsy. 
  • Megheart
    Megheart Jessa78

    Posted

    So far we have two replies to Jessa's question - both polar opposites!

    My question: is there any connection between the degree of dry mouth that one has and a negative or positive lip biopsy?

    So is a person with extremely dry mouth more likely to have a positive lip biopsy than a person who is less troubled by dry mouth? Can we get an indication from the symptoms?

    • Tumtum1963
      Tumtum1963 Megheart

      Posted

      All I can say is that those few I know who have been diagnosed by lip biopsy tend to have less severe Sicca but much more extensive systemic signs and symptoms. My mouth is not found to be particularly dry but the neuropathy makes it feel dry. My spit is very thick and increasingly choking and my eyes are very dry but no corneal damage yet. In my personal experience those who have lived with dry eyes and mouth for so long and who have severe neuropathy, including burning mouth or RA or other nasties such as Scleroderma are the ones who tend to have positive lip biopsies. I don’t think bad Sicca  Sjögren’s are necessarily the same thing. I also think people can feel their mouths and eyes are very dry because it’s relatively new for them so they are extra aware.

      For me Sjögren’s is about viscosity/ poor quality of spit and tears as well as lack of - ie quality as much as/ more than quality.  I think this disease has attacked every inch of me one way or the other and Sicca is tip of the iceberg. Others I know who were diagnosed by lip biopsy are the same. 

    • Tumtum1963
      Tumtum1963

      Posted

      Oops that should say quality more than quantity! 
    • Viktoryalynne
      Viktoryalynne Megheart

      Posted

      It depends on the specialist.

      I was referred to an Rheumatologist.  He was postive it was Sjogren’s by my symptoms.  The dry mouth, eyes, my salvia gland was always swelling up, causing ear pain, sore throat, my voice sounds very bad, pain in joints, lacey rash on legs, vaginal dryness, stomach problems and other symptoms.

      The Rheumatologist referred me to a ENT Specialist for a lip biopsy.  The ENT did a CT scan.  He could clearly see the stone in my gland.  He put Sjorgen’s as my diagnosed.

      Symptoms started in 2007.  I kept getting worse.  I was final diagnosed in Jan.  2018.

      I had my stone removed from my gland.

      Now my ENT is referring me to another ENT to see if I’m a good candidate for botex shots because I can not have a conversation without difficulty from the dryness.  It’s painful to talk and I get breathless.

  • aitarg35939
    aitarg35939 Jessa78

    Posted

    Hi Jess's

    I cannot speak to the lip biopsy as I've never had one and probably won't.

    BUT: compared to me in Texas you are so close to Baltimore & Johns Hopkins where the USA Sjogren's Syndrome Foundation is, along with their SS clinic. If I were you I'd call them & get details about appointments & what they charge low-income or whether whatever coverage you've got is acceptable. Maybe they'll turn you down but chances are just as good that they'll see you. Start calling now, no telling when their spring break is.

    I wish you all the best. I'd cry non-stop if I were faced with current Medicaid debacle. Sending you live & prayers.

  • reme
    reme Jessa78

    Posted

    Hi Jessa I had a lip biopsy done as my bloods were not showing up sjorgrens which happens in about 40% cases . At that stage it was a ENT doctor I was attending for dryness in saliva glands .  A biopsy I think is best way go. It was not a big deal local anesthetic and your lip feels numb for few days after but heals very quickly. It was an ENT divot who did it and only then was I referred to rheumatologist. Good luck.  Reme
  • chris08587
    chris08587 Jessa78

    Posted

    I am very sorry that you have this aweful disease. New to Being diagnosed, I would never have a lip bio.? And it’s not about the pain. At all. Most of us have horrible pain along with much else with these insidious AU diseases. Last I checked even with a skin biopsy which tests very positive for ss. You still won’t get a diagnosis that you want/need.  Do some more research in my respectful advice. You have the symptoms imho. So the test , if proved positive will do nothing to support you having SS. I mean most respect; not disrespect. Sure, I would allow my lip to get cut up to get a

    Proper diagnosis, but last I checked, odds are. Bad.  I’d rather keep my lip healthy; keep a journal about my symptoms and find a great dr who is well versed inAI disease.

  • chris08587
    chris08587 Jessa78

    Posted

    Sorry again about how you are feeling. Just want to be clear that like any positive ANA blood test is similar to I’ve learned about the lip biopsy.  I wish you well no matter what you decide.
  • chris08587
    chris08587 Jessa78

    Posted

    Also. What I meant to say is a lip biopsy will never yield any results of having SS 100%. Nothing will.
    • Tumtum1963
      Tumtum1963 chris08587

      Posted

      It will where the medical profession is concerned. In my case this means I have a definitive diagnosis as Sjögren’s and can access free prescriptions for topical and other treatments where I live. Also I know what is causing my symptoms because all five salivary glands removed  were full to the brim with lymphocytes. I guess a non specific or negative lip biopsy wouldn’t rule SS out but a very positive one like mine certainly means I have SS and no one can fob me off with Fibromyalgia or ME or even mild RA again.

    • Megheart
      Megheart Tumtum1963

      Posted

      That makes a lot of sense Tumtum. 

      I haven't had one done as I was eventually diagnosed with positive ANA's and anti Ro's which added confirmation to the symptoms I had been experiencing.

    • Tumtum1963
      Tumtum1963 chris08587

      Posted

      Sorry Chris but I believe you are wrong. According to the Sjögren’s expert and my great oral medicine consultant the lip biopsy is the only definitive test for Sjögren’s - if it’s positive that is. 

    • Tumtum1963
      Tumtum1963 chris08587

      Posted

      It is 100% in my case because each gland removed was completely riddled. What is not clear is whether it is my primary (first) rheumatic disease or not. But I am fairly certain it is. 
    • chris08587
      chris08587 Tumtum1963

      Posted

      Thank you for telling me this. In my limited research on this, I learned a lip biopsy still wouldn’t “do” much insofar as a diagnosis. I’ll have to read more. I had the eye paper test. Ha. Ha. Diagnosed with ss but my eye test came out “ok”.ill read up on the lip biopsy info again. I was one of the 1% that got diagnosed so quickly so that is maybe why I don’t understand the need for such a test because even if you. Test positive, you may not get a diagnosis. Is this about insurance things? Certainly one will get a diagnosis of undifferentiated connective tissue disease? Thank you for your info. I am sorry that I may have passed on bad info. Just heard bad percentages about the lip biopsy 
    • Tumtum1963
      Tumtum1963 chris08587

      Posted

      Well I am in the UK so it maybe different where you are. But the American College of Rheumatology (ACR) diagnostic criteria and EULAR both state positive lip biopsy or anti Ro or anti La (SSA or SSB) positive as being the only accepted criteria for diagnosis. So I’m guessing you had the positive bloods and therefore didn’t need lip biopsy for a firm diagnosis? 

      The blotting paper eye test Schirmers is not conclusive of Sjögren’s - the only time mine was done 3 years ago it was normal, as was a spit test. People can have dry eyes and get positive results for any number of reasons such as age, medication, other conditions etc. 

      The lip biopsy is therefore the only reliable way to get a diagnosis of Sjögren’s if your bloods aren’t positive. If it’s positive then it means you have Sjögren’s. 

    • chris08587
      chris08587 Tumtum1963

      Posted

      I am so confused and sorry that what I learned is obviously not correct. My rhumie gave me the option of the test but told me of the poor % of any valuable/reliable info. Possibly he presented it in such a way so I wouldn’t get it done! That was my experience and I thank you all for not chopping my head of for my opinion😀. 

    • chris08587
      chris08587 Tumtum1963

      Posted

      I went to the university of east Anglia for a minute. Hi england😀. I have never heard of any test/ blood/ eye/ saliva being 100% in any way in any illness.  I say if one wants it done, then get it done. I would just caution the reliability of such a test as some have it performed and have ss and test negative.

    • chris08587
      chris08587 Tumtum1963

      Posted

      Just re read your post! Now I get what you are asking! Sorry I have been thick regarding this topic!
    • reme
      reme Tumtum1963

      Posted

      H Tumtum

      I agree with you re a lip biopsy I'm in Ireland and as I said my bloods were negative and lip b confirmed my diagnosis. It was a relief as I thought I was going mad with the fatigue and joint pain. The dryness was secondary and I was putting it all down to my age!!! It's not for everyone and if your bloods are positive for ss then no need for biopsy. Reme

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.