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Do I Have Sjögrens?

If your eyes feel gritty and you need to blink more than you used to, if you need more drinks of water through the day because your mouth feels like a desert, and/or your skin feels dry itchy, burning, cracked; if you feel a profound fatigue most of the time, it’s a possibility. You needn’t have all, or even most of these symptoms; One or more can lead your doctor to a diagnosis. The trouble is that in the early stages, the symptoms come and go and are often non-specific, until later when the disorder becomes acute. Some symptoms of Sjögrens are:

  • Dizziness
  • Tiredness
  • Generally ill with low-grade fever
  • Itching, gritty eyes
  • Difficulty swallowing
  • Loss of sense of taste
  • Severe dental cavities
  • Hoarseness
  • Joint pain or swelling
  • Swollen glands

In spite of the fact that Sjögrens (Sjs) is the cause of suffering for 4 to 5 million Americans, it is not on the tip of all Doctor’s tongues, If your doctor evades your questions and you think that Sjs could be the cause of your troubles, keep looking for a Doctor who has others like you in their practice. Then, the necessary tests to make an objective diagnosis can be performed.  Check out our Resources Page for a list of institutions where you can get more information.  And remember, the earlier you have this checked out by your Doctor, the better.

Below, you can find some of the most recent questions answered by Dr. Carteron, you can find more by searching the menu on the far right. Questions and Answers are organized by topic, or you can ask Dr. Carteron a question by visiting this page.

Men with Sjogrens

Consider further testing for Sjs in Men. Negative autoantibodies (SSA/B, ANA) may be more common in men.  dr c Abstract Am J Ophthalmol. 2015 Sep;160(3):447-452.e1. doi: 10.1016/j.ajo.2015.06.004. Epub 2015 Jun 17. Ocular complications of primary Sjögren syndrome in men. Mathews PM1, Hahn S1, Hessen M1, Kim J2, Grader-Beck T2, Birnbaum J2, Baer AN2, Akpek EK3. Author information 1Ocular Surface Diseases and Dry Eye Clinic, The Wilmer Eye Institute, The Johns Hopkins University School of Medicine, Baltimore, Maryland. 2Jerome L. Greene Sjögren's Syndrome Center, The Johns Hopkins University School of Medicine, Baltimore, Maryland. 3Ocular Surface Diseases and Dry Eye Clinic, The Wilmer Eye Institute, The Johns Hopkins University School of Medicine, Baltimore, Maryland; Jerome L. Greene Sjögren's Syndrome Center, The Johns Hopkins University School of Medicine, Baltimore, Maryland. Electronic address: esakpek@jhmi.edu. Abstract PURPOSE: To report the ocular complications... Read More →

Sjogren's Syndrome Foundation Clinical Practice Guidelines for Management of Systemic Disease

Published on Line Will be presented by FB Vivino on Sunday 11.8.15 |Poster Session A 9-11AM @ American College of Rheumatology Annual Mttg in San Francisco http://acrabstracts.org/abstract/sjogrens-syndrome-foundation-clinical-practiceguidelines-for-management-of-systemic-disease/  Accessed October 25, 2015. ABSTRACT NUMBER: 625 Sjögren’s Syndrome Foundation Clinical Practice Guidelines for Management of Systemic Disease Frederick B Vivino1, Steven E. Carsons2, Ann Parke3, Nancy Carteron4, Vidya Sankar5, Richard Brasington6, Robert Fox7, William Ehlers3, Michael Brennan8, Robert Hal Scofield9, Katherine M Hammitt10 and Sjogren's Syndrome Foundation Clinical Practice Guidelines Committee, 1Rheumatology, University of Pennsylvania, Philadelphia, PA, 2Rheumatology, Allergy and Immunology, Winthrop University Hospital, Mineola, NY, 3University of Connecticut, Farmington, CT, 4University of California, San Francisco, CA, 5Univeristy of Texas, San Antonio, TX, 6Washington University,... Read More →

Sjogrens and Lung Involvement

Q:  I was diagnosed with Sjogrens about 6 years ago.  I manage the dry eyes with Restasis and the dry mouth with Xylimelt lozenges.  Neither is ideal...but I'm managing.  In April 2014, I had a Total Hip Replacment following a year of osteo-arthritic pain.  I have bounced back well and resumed normal activities. In July of last year, though, I developed a productive cough...which did not go away.  My Dr at the time prescribed anti-biotics and then retired.  My rheumatologist listened to my lungs but said I should go to my new GP for a diagnosis.  My new GP sent me for a CT scan which showed changes in the upper lobe of my right lung - diagnosed as COPD, thickening of the Bronchial tubes ( I have NEVER smoked).  He has put me on Spiriva, which has not, to this point ( 3 weeks later )  eased the productive cough at all.  I know this might take some time. My question is:  could this lung involvement be a result of the Sjogrens?  I asked my GP,  but I'm not sure he's very familiar... Read More →

Dry Mouth

Q:  My 20 year old daughter has positive SSA and SSB antibodies with negative ANA. She has been having mouth sores and says when she wakes up she feels her inner cheeks and lips stick to her gums and also starting to get mildly inflamed gums . I wonder if she could be prescribed Pilocarpine or Evoxac, but I don’t know if a lip biopsy (salivary glands) is mandatory to be prescribed such medicines. I really would prefer if they don’t do the lip biopsy for fear she could end up with numbness. Could she be prescribed the medicines just based on her positive SSA and SSB antibodies and her dry mouth symptoms? Also how bad should the symptoms be to be prescribed such medicines, do they need to be really severe, or can it be prescribed to patients with medium to mild symptoms? I really would appreciate if you could give me your opinion and advice. Thank you. A: If symptoms are consistent with Sjogren's and SSA/SSB antibodies are present, a lip biopsy would not be needed for diagnosis or for... Read More →

Neuropathy in Setting of Ro (SSA Ab)+ and Child with Neonatal Lupus

Q:  Hi. I'm a young mom whose baby was born with neonatal lupus. After blood tests I was told I have anti Ro. I was not having any symptoms at the time and was told to come back for blood work again next year. In the meantime I have been experiencing small fiber neuropathy. I called my rumatologist to ask if this was a symptom and she said no and sent me to a neurologist. The neurologist said its all from my back but my lower lumbar MRI was clear. My in office testing and NCS didn't raise any concerns for MS for him so he too sent me on my way. When I read online I see that neuropathy can be some people's first symptom but I feel like My concerns are being brushed off my every doctor and I feel sad and without direction. I'm in the woodlands tx (near houston). Is there any doctors in the area that would be familiar with this symptom of sjrogens and how to treat it? I'm desperate and scared. Thank you! A:  Small fiber neuropathy (SFN) is diagnosed by a skin biopsy with special staining.... Read More →

Positive Lip Biopsy with Dry Eye/Mouth + Systemic Symptoms - Why ask for SSA/B Testing?

Q:  I had a positive lip biopsy for Sjogrens syndrome,  now because my eyes are so bad I'll be getting permanent eye plugs in a few days. I saw the RA Dr today for the first time.  Told him my symptoms.  Many started years ago and progressed over time like joint pain, body rashes. Other symptoms are, dry mouth dry eye, low grade fever,  Tingling of face hands feet, numbness, bug crawling sensation, dry skin, constant yeast infections, dry crack lip, hard to Talk and swallow, hard to breathe,  pains in abdomen and chest,  dry nose and blisters, chronic fatigue.  All this has effected my daily living. Most days I can't get out of bed, or I can't sleep due to the pain.  What im confused about is why he wanted more blood work (SSA/ SSB) if I already have a positive lip biopsy.  Wouldn't the next step be to work on some of these symptoms.? I left there feeling more confused.  Was told I can take RX to help produce saliva in my mouth but it would cause me more side effects.  Do I... Read More →

Management of Sjogren Dry Eye

A "messy" copy of the Clinical Practice Guideline Article on Management of Sjogren Dry Eye: © The Ocular Surface  journal (www.theocularsurface.com) dr c   Clinical Practice OUTLINE Introduction Evaluation of Dry Eye Disease A. Symptoms B. Signs/Tests of Tear Function Management of Dry Eye A. Topical Tear Substitutes and Lubrication B. Anti-inflammatory Therapy 1. Topical Corticosteroids 2. Topical Cyclosporine 3. Omega 3 Essential Fatty Acids C. Secretogogue Therapy D. Punctal Occlusion E. Autologous Serum F. Mucolytic Therapy G. Therapeutic Contact Lenses H. Management of Eyelids VI. Summary and Recommendations providers were enlisted to evaluate recent literature and develop recommendations for those guidelines. This prelim- inary perspective from the eye care subcommittee is pro- vided prior to the ultimate publication of the entire committee and is based upon agreement of the subcommit- tee members, all of whom contributed to the guidelines and... Read More →

Management of Sjogren Dry Eye

Abstract of Published Clinical Practice Guidelines for Management of Sjogren Dry Eye: http://www.ncbi.nlm.nih.gov/pubmed/25881996   Published in The Ocular Surface in April 2015   www.theocularsurface.com This huge project was supported both administratively and financially by The Sjogren's Syndrome Foundation (www.sjogrens.org). The Clinician and Research Experts volunteered their time and expertise. dr c  Read More →

Dry Eye

Q:  Dr Carteron I have had several symptoms for sjogrens. Not been formally diagnosed I have sever dry eye and sever dryness around outside of eye constantly drinking. Severe joint pain back knees hips everywhere Ra doctor suggested eye doctor positive for severe dry eye prescribe restasis Blood work normal except producing to many red blood cells then next time tested it was normal. My blood work sometime inconsistent. Does this sound like sjogrens. Just need help can,t hardly work Thank you A:  Could it be? ... Yes .. But Dry Eye is common these days, and your health care team has hopefully excluded other causes or co-factors...such as hypothyroid. If you have been diagnosed with RA, then Sjs is a very common overlap. If you needed a definite diagnosis of Sjogrens, then you would need to know your SSA/SSB antibody, and or minor salivary gland biopsy (lower lip) status and if those were not diagnostic, then sometimes the ANA by IFA (immunoflourescence) titer and pattern and the RF.  Low... Read More →

Sjo Diagnostic Test

Q:  The SSF does not endorse Nicox Sjö™ blood test but they do say they applaud any efforts to help patients to obtain an earlier diagnosis. So far, all of my blood tests have been negative and my lip biopsy was done at Mayo and was "not diagnostic for Sjogrens Syndrome." My eye doctor does offer the Sjo test. In your opinion, is the Sjo test a realiable test for the diagnosis of Sjogrens? Thank you A:  First, it is important to know more detail on minor salivary gland biopsy results. The comment " not diagnostic for Sjogren's Syndrome" most likely means there a focus score greater to or equal to 1.0 was not present in the samples examined by a particular pathologist at a particular facility. For diagnosis, or creating a hypothesis of a diagnosis, of an individual patient...additional information (clues) can be helpful. For example, if there were clusters of lymphocytes (focal lymphocytic sialadenitis)...this might suggest a Sjogren like process OR other chronic viral OR chronic inflammatory... Read More →