Negative lip biopsy - not sure what to do next

[LilliaT]

I got the results of my lip biopsy, and it is negative for Sjogren's.  So I have a negative lip biopsy, am negative for SSA and SSB, but have a slightly positive ANA (1:80, nucleolar).

I had a very quick phone call from my rheumatologist, who feels that the negative lip biopsy pretty conclusively rules out Sjogren's.  She said that I could just use OTC products for the dry mouth.  She had previously mentioned the possibility of medication (presumably Exovac or Salagen) to help with the dry mouth, but didn't seem to want to discuss it during this conversation.  With respect to the positive ANA, she said that it's a low number, and that maybe it's something to monitor once a year.  It kind of sounded like she felt (in a friendly way) that I no longer needed her services.

I was so happy to hear that the lip biopsy was negative.  But at the same time, my eyes and mouth (and nose) continue to be very dry, and I do seem to be oddly tired all the time no matter how much sleep I get.  But it seemed like both the ENT (who did the biopsy) and the rheumatologist see no need to investigate further.  So I'm just not sure what to do next at this point. 

[Linda196]

Have you been investigated for immune deficiency? It would involve an Immunoglobulin quantitative count. If you are deficient in some immunoglobulins, you may lack the ability to form autoantibodies, and it may give your doctor another aspect of your symptoms to help with diagnosis.

Meanwhile, drugs like  Exovac or Salagen are treatments for symptoms, not for Sjogren's, and can be ordered by any doctor for comfort, they are not the exclusive domain of Rheumatologists.

[ktfabian]

I was diagnosed with Sjogren's in 2001 after nearly 6 years of negative blood tests. It was an eye specialist who made the diagnosis and the blood work backed him up.

About 12 years later, I took part in a research project that involved collecting saliva, doing a lip biopsy, blood work and other things. My lip biopsy was negative. But the doctors reviewing the tests said, given the small amount of saliva they were able to collect and the other symptoms I had, as well as my blood work, which after 22 years since the onset of symptoms was positive without a doubt, I most definitely had
Sjogren's.

If you feel you have the symptoms of Sjogren's, can you find another doctor to work with? And even if you don't have Sjogren's, this doctor shouldn't be closing the door on you so fast. If you need treatment for dryness, you need treatment for dryness. I'm sorry your doctor has not been more understanding.

Tracy

[Wal]

Thanks for the update. I've been wondering what your results were. It's good news and bad news I know. Still no real answers. I'm in the same boat. Though I haven't had lip biopsy yet. Wondering if I should even bother. Something tells me it would be negative. I have a long list of symptoms that have come and gone over the past decade which are medical mysteries. I usually get a "it's stress." Hope you find some relief soon. I would definitely talk to your current rheumatologist again about medication for dry mouth or your primary care doc if needed.

[SjoGirl]

My lip biopsy was negative as well so Johns Hopkins told me I had Undifferentiated Connective Tissue Disease (which means I have symptoms of a number of autoimmune diseases, but not enough symptoms to diagnose one disease).

Have you seen an eye doctor and had a Schirmer's test. Mine was positive for Sjogren's level dryness any the person who was my rheumatolgist here said I had Sjogrens and a positive lip biopsy was not necessary for diagnosis. I think my new rheumatologist isn't sure whether it's Sjogren's or something else. I definitely have lots of osteoarthritis, which he is paying more attention to.

With regard to symptoms, there are many OTC items for dry mouth such as Xylitol and sprays (Biotene makes one). I am using a scrip for Evoxac because I started having trouble swallowing.

[katie1111]

I, too, am sero negative and biopsy neg but have many of the other symptoms.  You might look for another opinion.  My primary says he doesn't think it is Sjogrens but thinks there is something autoimmune going on.  He prescribed Plaquenil, which has definitely helped.  The important thing is to find someone willing to treat it.

Last week I was dealing with another dental problem and saw a new oral surgeon.  I started to tell him that although I was biopsy negative, my saliva test was positive.  He said, "You don't need to tell me.  I can look in your mouth and see you have Sjogens.  FINALLY!  He came up with a dental plan to deal with the Sjogren's.  I told him that I loved him.  He said he was already married.  I said told him that I was also married, but I still loved him.

Hang in there and keep looking until you find someone that understands Sjogrens.

Katie1111

[Deb 27]

It can take a while for all the symptoms to develop. Mine was. I had a lot of crazy stuff going on, colitis, joint pain, weird skin rashes that turned out to be morphed (scleroderma of the skin) and the dryness didn't start until later. I hope this all clears up for you and doesn't go the other way.

[Navigator]

In the interim I would take very careful care of my mouth and teeth.  Take the Biotene products, drink lots of water, brush and floss religiously, go for dental cleaning at least once a quarter and see if your dentist has an opinion.  Every drug has a positive and negative impact on our bodies so I can understand the reluctance of doctors to add to the drug burden of their patients. That being said, this is something to keep on the front burner and see if it progresses and does not resolve after you try all the non medication options.   

If you are seeing more cavities that is a sign that whatever is happening is not good. It is evidence to bring to the rheumatologist. Your dentist can not prescribe Evoxac but can send note to your rheumy.  Let us know how it goes. I have been there and now have crowns on my then disintergrating lower teeth.   

[Carolina]

Hi Lillia,

Treat your symptoms, and follow all the advice above.

You are fine.  "We use the tests we have, not the tests we need." says my Duke Immunologist.

Stay tuned, and keep US posted.

Hugs,  Elaine

[marcatbak]

Your post could be me.  I am seronegative, negative lip biopsy, ANA 1:80 homogeneous.  My dr. thought for sure I would test positive for Sjogrens.  Instead he says I have sicca syndrome.  When I google that what comes up is information on Sjogrens.  I know that you can have negative blood work and a negative lip biopsy and still have it.  He said he couldn't say I had it based on their criteria for research purposes as everyone has to have the same.  So I figure I have it but because of the negative bloodwork he won't say yes. Regardless he said to treat my symptoms the same way they would if it was sjogrens.

[Carolina]

Marcat, you are so correct.  The criteria for a diagnosis of Sjogren's is very exacting so that candidates for research will have the same confirming blood work, and are therefore 'equal' when the research is carried out.

Those are the tests we have.  And some people fit into those tests very clearly.  But those of us with Immune Disorders and those who TREAT immune disorders know that there are many people who don't fit those tests, and who benefit greatly from the treatments suggested for Sjogren's.  AND they often also exhibit many of the organ/system complications that are possible with Sjogren's.

Try to relax (HAH!) and carry on with finding doctors who will treat you and your own combination of helpful and soothing treatments, Lillia.

If you are lucky things will stay as they are, or possibly even improve.  If not, well, we are here, and tests may improve and treatments will improve, and adopting as positive an attitude as possible is always useful in life.

Hugs  Elaine

[LilliaT]

Thank you for these replies and suggestions. 

Linda196 -- I will ask about the possibility of an immune deficiency.  Do you think an immune deficiency could exist even if I have, occasionally, tested positive for ANA?  And I am going to ask my primary care doctor about whether something like Exovac or Salagen would be appropriate.

Wal -- I sort of expected my biopsy to be negative too.  I wish you and I both had better answers.  (Actually, as long as I'm wishing for things, I guess I should go all out and wish that all of us on this board would magically be cured of everything.)  I wonder if there are statistics about how many seronegative people with Sjogren's symptoms have negative lip biopsies -- and how many of them eventually receive a Sjogren's diagnosis or find some other explanation.

Tracy, katie1111, marcatbak -- thank you for all the information.  It is strange to me that a person can have the mouth dryness (as we all do) and not have a positive lip biopsy -- because shouldn't there be some signs of whatever is causing the glands to stop working?  And it just generally surprises me that there still aren't better ways to test for Sjogren's at this point.  I think I may try another rheumatologist -- even though I feel a little awkward hopping from one doctor to another -- because I don't really get the sense that this doctor is particularly knowledgeable about Sjogren's.  (It was disappointing, because she was recommended as someone with Sjogren's experience.)  And even if I don't have Sjogren's, which is what I'm still hoping, I'd still like to know how to address my symptoms.

Elaine and SjoGirl -- thank you for the advice and kind words.  You've both been really patient and helpful with my endless questions and anxieties.  I'm no longer so paralyzed with fear (as I was in the beginning) and am instead trying to keep a positive state of mind.  I know it's a cliche, but I keep telling myself that the one thing I can control is how I choose to react to what's happening -- that I can either wallow in despair, or I can focus on all the good things and be as brave and positive as you guys are.  And most of the time, that actually seems to work.

Navigator -- Even though the mouth dryness is the most troubling symptom I have right now, so far the dentist says she doesn't see any signs of problems.  (I am pretty paranoid about possible tooth problems right now.)  I use Xylimelts and the Biotene gel at night, and xylitol candies and Biotene rinse during the day, and am diligent about flossing and brushing.  I hope that will be enough to keep things in check.

Deb 27 -- thank you for the nice words.  How long did it take for you and your doctors to figure out what was going on, once all those symptoms began?  Every time anything happens now, I automatically wonder if it's related to some autoimmune issue or if it's just a random occurrence.  (For example, recently one knee has felt wonky -- as if the ligaments (or whatever it is) holding everything in place were loose.  It doesn't hurt, but I'm in a state of heightened alert now for anything that seems unusual.) 

[ktfabian]

Lillia,

Don't ever feel bad about changing doctors. If you had a mechanic working on your car and it seemed each time he fixed something, it was never completely done right,  you wouldn't think twice about finding another mechanic.

You and your body are much more important than your car. If you don't feel you have a connection with this doctor or that he or she isn't giving your symptoms the attention they deserve, you owe it to yourself to find a doctor who will work with you to help you feel the best you can.

I hope you find a fantastic doctor, you deserve one!
Tracy

[Carolina]

Dearest Lillia,

We ARE endlessly patient with your questions and concerns.  Here you find the ONLY group of people who care deeply about what you are experiencing because we have all experienced versions of the same thing.....often for years and years.

How lonely it would be for me without the internet, my wifi provider, my laptop, and this forum.

I immediately think of sharing when something happens.  And I turn to the posts like yours, eagerly, because I often know what you are dealing with, or at least a small part, perhaps.

If we can share information and offer support, that is so rewarding for US.  Immune Disorders are so difficult to deal with for everyone involved.  Perhaps some day this will not be the case.

But for now, please share when you wish.

We are here

Hugs,  Elaine