New with pending Lip Biospy

[Ms L]

Hi all,

I have been reading and learning lots from the forums today. An ONC/HEM specialist ran extensive tests and found Thalassemia then referred me a Rheumatologist who started the ball rolling.
Rheum feels strongly about Sjogrens and Opthamalogist is about on board as well. ENT will perform a lip biopsy Monday - I'm hoping it doesn't end in a horror story of pain and lengthy healing. Along with that I'm over the top worried about gaining more weight due these meds and lack of energy to exercise.

I'm reading for as much advice as possible. Thanks!

[Joe S.]

Welcome to the forum. I am not a supporter of the lip biopsie. Management is key to living successfully with this disease. Check out our signatures to see what some of us are taking. Good luck and best wishes.

[Ms L]

Hi.
I've read that several folks are not a fan.
Thank you, will do!

[SunshineDaydream]

Welcome to the forum, Ms. L. Good luck with your lip biopsy on Monday.

Lip biopsy topic can elicit differences of opinion. If I were sero-positive, I would not bother with a lip biopsy. However, I'd would definitely consider it if I were sero-negative depending on nature and level of symptoms I was experiencing.

Hydroxychloroquine generally doesn't cause weight gain, but prednisone could depending on the dosage level and duration. If you're lucky hopefully the former will provide enough symptom relief that you could, with doctor approval, reduce or eventually stop using prednisone.

[Ms L]

Thank you SunshineDaydream,

I will certainly keep this info mind - especially regarding the meds. I'm now going to research sero-negative/positive. Not sure I understand.
Thanks

[Ms L]

Found my answer to sero-neg/pos on ibji.com

Rheumatoid Factor Positive (Seropositive) RA: If your blood tests positive for the presence of protein called rheumatoid factor (RF), it indicates that your body may be producing an immune reaction to your normal tissues.
People who test negative for the presence of antibodies or RF in the blood are referred to as seronegative.

[Sjogi32]

The only advice I have on the lip biopsy is to be aware that if your result is total gland destruction and the doctor used dissolvable stitches then your stitches might not dissolve and you might need to have them removed. I would ask when they should dissolve by and if they haven't by that time go back.

[Ms L]

Sjogi32,

Thanks for that advice.

[SunshineDaydream]

Ms L, the seropositive seronegative information you found is regarding rheumatoid arthritis.

Here's an article on seropositive and seronegative regarding Sjogren's. It involves presence of SSA and SSB antibodies which can be determined by blood test.   http://www.medpagetoday.com/meetingcoverage/acr/42667

Basically, if blood test results show Sjogren's, I wouldn't get lip biopsy. If blood test is negative but patient is symptomatic, positive lip biopsy could support Sjogren's diagnosis.

I'm wondering whether the doctor prescribe hydroxychloroquine and prednisone for you based on blood test results or just self-report of symptoms.

[Ms L]

SunshineDayDream... Thanks for sharing the correct info with me regarding seropositive and seronegative  regarding Sjrogren's. I will click that link to read shortly.  I was referred to a rheumatologist after a HEM/ONC diagnosed me with Thalsemmia and noticed a few additional abnormal labs. The Rheum immediately noted my red dry eyes, parotid swelling, asked me several questions - regarding dry skin(yes), rashes(yes), pain(yes) - and certainly fatigue(yes). Rheum prescribed the Hydroxychloroquine & Prednisone then referred me to Ophthalmology, ENT & Derm.

(RHEUMATOID FACTOR - 42, ANA SCREEN - 2.18, ANTI-DBLE STR DNA - 96, SSA - 1.14, SSB 0.21 negative,, ANA TITER 1 - 1:320, ANA PATTERN 1 - Homogenous, PTT-LA SCREEN -48, DRVVT SCREEN 37, HEXAGONAL PHASE = WEAKLY POSITIVE

[Jasper]

Minor salivary gland biopsy (lip biopsy) is the gold standard for diagnosis of Sjogren's.

Minor salivary gland biopsy is also used to help determine how likely is it that a person with Sjogren's will develop Lymphoma. People with Sjogren's have a much higher rate of Lymphoma than the general population. If the salivary gland biopsy shows that a person is more likely to develop Lymphoma, then that person can be monitored more closely and treated sooner. The salivary gland biopsy may also be important if you need to be placed on some of the biologics used in Sjogren's.

http://www.rheumatologynetwork.com/acr-2014/predicting-lymphoma-risk-sj%C3%B6gren%E2%80%99s-salivary-gland-biopsy

"Studies estimate that people with primary Sjogren's syndrome have up to a 44% greater risk of lymphatic cancers, a third of which are non-Hodgkin's lymphomas (NHL).

It may be possible to use a salivary gland biopsy in tandem with clinical assessment to identify patients at greater risk at younger ages, in time to give treatments that may prevent those lymphomas, a Swedish researcher told the 2014 meeting of the American College of Rheumatology.     ..........

A 2014 study found that patients with germinal center-like structures in minor salivary glands had a 15 times greater risk of developing NHL compared to those without GCs. In addition, absence of GCs had a 99% negative predictive value for NHL.

Increasing GC focal scores also portend a higher risk of lymphoma, Theander said."



Most lip biopsies go very smoothly. The main thing is to be sure that the doctor performing the biopsy is proficient in doing lip biopsies and does several lip biopsies a month. You want to be sure that the doctor knows how to do the biopsy so that he/she makes only a very small incision, obtains a large enough sample and enough salivary glands, handles the specimen correctly, and sends the specimen to a competent pathologist who is experienced in examining salivary gland biopsies.

I had a salivary gland biopsy in Oct. 2013. It went very smoothly. It was sore for a couple of days but it healed rapidly and very well. I have no residual from the biopsy. I am very glad I had the biopsy. It was positive for Sjogren's.

[Sjogi32]

Hi Jasper,

What is a "germinal center-like structures in minor salivary glands" and do they tell you if you have this? I only got told that my result was that I had stage 4 total salivary gland destruction.

[Jasper]

"Germinal centers or germinal centres (GC) are sites within secondary lymph nodes where mature B lymphocytes proliferate, differentiate, and mutate their antibody genes (through somatic hypermutation), and switch the class of their antibodies (for example from IgM to IgG) during a normal immune response to an infection. They develop dynamically after the activation of follicular (Fo) B cells by T-dependent antigen.  ..... Germinal centers are an important part of the B cell humoral immune response, acting as central factories for the generation of affinity matured B cells specialized in producing improved antibodies that effectively recognize infectious agents, and for the production of durable memory B cells. Histologically, the GCs describe microscopically distinguishable parts in lymphoid tissues."

"Medical relevance"
"As germinal centers are important structures of the adaptive immune system, their deregulation is implied in many immune diseases, for example rheumatoid arthritis, immunodeficiency and many lymphomas like DLBCL and Burkitt's lymphoma."

https://en.wikipedia.org/wiki/Germinal_center

My understanding is that the presence of germinal center-like structures in salivary glands is predictive of Lymphoma, not diagnostic of Lymphoma. My understanding is that germinal center-like structures do not belong in minor salivary glands. They belong in the lymph nodes. So, if they are present in minor salivary glands, it is predictive of the development of Lymphoma.

My Rheumatologist gets salivary gland biopsies for both diagnostic value and also lymphoma predictive value. She is at the U of MN so they have a good pathology lab there.

From an article by Dr. Robert Fox, Rheumatologist, Scripps in LaJolla, CA:

"Despite  the important prognostic information to be gained from a more detailed analysis of the minor salivary gland biopsy, most rheumatologists in the USA do not obtain biopsies,  and  oral  pathologists  do  not  routinely examine them critically for the presence of ectopic germinal centres. .....  The  current  article  emphasises  the  need  for  rheumatologists to obtain minor salivary gland biopsies as a method to predict the risk  of  lymphoma  and  for  the  pathologist to read the biopsy with attention to ectopic germinal centres as well as focus score.  .....  However, we have not established  uniform  guidelines  for  oral  pathologists to use histological stains or immunohistology to evaluate B cells and dendritic  cells  in  minor  salivary  gland  biopsies. The importance of this article is that it challenges us to ?move on? from the current method of evaluation of the minor salivary gland biopsy using routine histology  simply  to  ?c o u n t  l y m p h o c y t e s ?  and  calculate focus scores. The key take-home message of this article would include, at a  minimum,  the  reporting  of  lymphoid  organisation/germinal  centre-like  structures in the lip biopsy by pathologists. In view of the importance of the detection of ectopic germinal centres in minor salivary  gland  biopsies,  we  should  strongly advocate  for  guidelines  to  pathologists  that  identify  germinal  centres  and  their  associated   lymphoid/dendritic   cells.   It would  appear  that  many  talented  and  perhaps overworked pathologists are not aware  of  the  rudimentary  methods  to  evaluate and grade minor salivary gland biopsies from SS patients. All too often, rheumatologists  receive  the  rather  useless  report  ?no  evidence  of  cancer?  and  not even the report of a calculated focus score.  As  we  establish  patient  registries  to  improve  prognosis  and  guide  therapies, minor salivary gland samples must be  collected,  processed  and  evaluated  in  a  uniform  manner  to  allow  compari-son  of  results  from  different  cohorts  of  patients. In other medical specialties, biopsies of lymph nodes or breast tumours routinely employ     ?special     immunohistological     stains?  for  prognosis  and  establishment  of  therapy.  This  paper  raises  the  ques-tion of whether we are getting maximal information  from  minor  salivary  gland  biopsies   in   rheumatology.   The   strong   association of germinal centre-like structures  with  a  higher  risk  of  lymphoma  provides an important clinical incentive for  rheumatologists  to  demand  a  more  detailed  report  of  the  minor  salivary  gland   biopsy.   In   addition,   the   added   knowledge  of  the  pathogenesis  derived  from  understanding  of  these  ?extraglandular?  lymphoid  infiltrates  will  help  us 
move forward with novel treatments by identifying subsets of SS patients. "

http://ard.bmj.com/content/70/8/1351.full.pdf

[Ms L]

Jasper,

thank you for the detailed information on lymphoma and germinal centers (I had no idea). It is my hopes that my lip biopsy will go as smooth as yours - the ENT specialist is listed as having performed many and Sjogrens is one of his specialities.

[SJSman]

Hi Ms L,

You certainly have a lot of positive antibodies, however, you obviously have Sjogren's anyway.  Please note that a positive lip biopsy does not mean that you do not have Sjogren's.

Welcome!