Lip biopsy

[singeanna]

So I need to confirm I have sjogrens am seriously considering lip biopsy. Am anti-SS-B positive am one rheumy says I do have SS and one days I don't. Now that I'm having problems with dysautonomia and small fiber neuropathy I need to confirm sjogrens so I can perhaps get Ivig. The plaquwnil isn't helping. Who is best to get to perform biopsy, oral surgeon?

[bluegardenia]

i had it done by maxillo facial surgeon twice with no problem. u have to go in a good place where they know what they are looking for and they have experience

[irish]

ENT or ear, nose and throat are the ones to go to as they usually do them. I had mine done in the office and after they numbed me it didn't take long and then 3 stitiches.

Always inquire as to how many lip biopsies the does a year. Have to do them pretty routinely to maintain good technique. Good luck. irish

[Tharrell]

Mine was negative and my new rheumatologist blames that on me being already on plaquenil and smoking. Others come out positive despite being on plaquenil, others negative without smoking or treatment. The biopsy wasn't bad, I just wished it wasn't useless in my case.

[Scottietottie]

Hi 

I had mine done at a local dental hospital. It was very straightforward, no more than mildly uncomfortable, healed quickly and the result was negative - so clinically I'm ser-negative.

The rheumatologist told me there is an autoimmune spectrum - and despite negative results, he says I am on the spectrum somewhere between SjS and lupus. Blood work lupus - symptoms SjS.

The biopsy does many a definitive dx however.

Take care - Scottie 

[MAT51]

I too had mine done in local dental hospital and it went fine.  I know it's different in the UK to US and not site where you live - but here in U.K you can only have formal diagnosis and be prescribed systemic treatment for Sjögren's if you have SSA or B antibodies or are lip biopsy positive. So I'm seronegative which means, despite a clear positive ANA, I'm not positive in blood for Sjögren's as you are. Here you wouldn't need to be given a lip biopsy as long as you were Ro or La positive and had confirmed Sicca. 

I do have a definitive diagnosis now at least - which means I've been able to take Cellcept after failing four other DMARDs. My neuro presentation of Sjögren's would not meet the criteria for IViG however because Sjögren's isn't included. I was off all meds when I had the lip biopsy and it was 100% positive i.e full quota of foci on all 5 salivary glands removed.

[Scottietottie]

Hi 

I'm in the UK. I was prescribed hydroxychloroquine, referred to an opthamologist and given pain killers. Was diagnosed without positive blood work or positive lip biopsy.

I tried to get the diagnoses removed from my notes (because it would be better not to have it for travel insurance) but my GP won't remove it.

Measurably dry eyes, dry mouth and connective tissue pain - the dx remains.

Take care - Scottie 

[MAT51]

Hi 

I'm in the UK. I was prescribed hydroxychloroquine, referred to an opthamologist and given pain killers. Was diagnosed without positive blood work or positive lip biopsy.

I tried to get the diagnoses removed from my notes (because it would be better not to have it for travel insurance) but my GP won't remove it.

Measurably dry eyes, dry mouth and connective tissue pain - the dx remains.

Take care - Scottie 

Scottie you are very unusual to be diagnosed without positive lip biopsy or autoantibodies. Were you diagnosed by a rheumatolgist and was this recent? If you want to get this diagnosis retracted (I had to do this with Scurvy somehow on my medical notes - which I've certainly never had!!) then all you have to do is show your GP these 2017  guidelines for diagnosis - which you don't meet at present. If you were diagnosed by a consultant rheumatolgist then you may need to go back to one to get it taken off your records. Only a rheumatolgist can diagnose Sjögren's.  If you have Sjögren's and are on Hydroxichloraquine then you should be under a rheumatolgist anyway. They may suspect Sjögren's but without the lip biopsy or antibodies they can't insist that you have it unless you also have another confirmed rheumatic disease.

http://www.nhs.uk/Conditions/Sjogrens-syndrome/Pages/Diagnosis.aspx

https://academic.oup.com/rheumatology/article-lookup/doi/10.1093/rheumatology/kex163

[xcitableone]

So I need to confirm I have sjogrens am seriously considering lip biopsy. Am anti-SS-B positive am one rheumy says I do have SS and one days I don't. Now that I'm having problems with dysautonomia and small fiber neuropathy I need to confirm sjogrens so I can perhaps get Ivig. The plaquwnil isn't helping. Who is best to get to perform biopsy, oral surgeon?

Hi sing! I was also SS-B positive only with negative ANA. I finally had the lip biopsy done a couple weeks ago that confirmed my SJS. I also suffer from dysautonomia and small fiber neuropathy. I feel your pain

They had my ENT perform the lip biopsy. They did it as an outpatient with local anesthetic, a small incision, and around 6 stitches. Took about 10-15 minutes total. Didn't hurt at all minus the very beginning where they stick you to start the numbing process.

Take care!!

-Greg 

[Scottietottie]

Hi MAT51 

I was diagnosed by a rheumatologist is 2004. I complained about dry eyes and teeth falling apart to an endocrinologist who was dealing with my thyroid and she did further blood tests and the anti-dsDNA came back elevated so she referred me to a rheumatologist.

he asked about symptoms and did a Schirmer's test. My eyes were measurably dry. he said my bloods indicated lupus but my symptoms were Sjogren's and that's what he put in my notes.

I'm not actually under a rheumatologist any more because they decided I was stabilized. I still see an opthamologist once a year but I stopped taking hydrocychloroquine after 6 years because it caused really annoying, white noise tinnitus.

I didn't have a lip biopsy until six years after the dx because they wondered if I could go into an SjS study. I didn't because ultimately I didn't fulfil the criteria. Was told I was on an autoimmune spectrum and the dx of SjS stood.

That's the story so far.
Take care - Scottie