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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.

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 →

Autonomic Neuropathy (Dysautonomia) in Sjogrens

Q:  Dear Dr. Carteron I would highly appreciate your prompt response to my question regarding my chronic overlapping autoimmune conditions. I have identified to have serological negative Sjogren's based on my clinical symptoms, POTS syndrome, +ve ANA w speckled pattern and Autoimmune dysautonomia based on abnormal autonomic reflex test, sweat test and the presence of ganglionic AChR antibodies, a relatively new FDA approved test for autonomic neuropathy and dysautonomia. I have gastric dysmotality identified by Barium swallow test which showed stomach to colon rapid transition time of only 15 minutes versus one hour. However, physicians are reluctant to give any medication to me until recently for dry mouth. I noticed that after taking EVoxac I develop palpitation and the color of the urine was orange red. Moreover, I have been reported to have swollen and inflamed lymph nodes repeatedly. I am pathologically fatigued and very much concerned. Please provide your expert opinion as to what... Read More →

Malabsorption in Sjogrens

Q:  Hello, I read your book and thought it was the best out of the 5 books on Sjogren's. My neurologist feels that Sjogren's is he cause of my recent diagnosis of small fiber neuropathy and autonomic dysfunction. My ANA is 1:640 speckled, lip biopsy is equivocal/borderline, and sjogrens blood test negative. My copper is deficient, ceruloplasm low and ferritin low. I was previously a health counselor unit I was struck by this and was healthy. I realize that a malfunction is happening with my absorption and you are the only doctor I can find who seems to be aware of this.  My nervous system is a mess and the rheumatoligsts here around NYC shrug their shoulders about  the mineral deficiencies and won't give an actual diagnosis. I am young with 3 children and desperate to be able to be in contact with a rheumatologist who actually knows sjogrens. A:  The wide range of GI manifestations in Sjs remains under appreciated. Blog by a RN and additional comments from patients:   http://reasonablywell-julia.blogspot.com/2009/02/gastrointestinal-effects-of-sjogrens.html CD... Read More →

Find a Sjogrens Specialist through SSF www.sjogrens.org

Q:  Hi Dr. Carteron.  I strongly suspect Sjogrens and need to know which specialist to turn to and which tests to request. Here is my history: Family history:  father rheumatoid arthritis, half-brother rheumatoid arthritis, half-sister Raynaud's disease. 2006 summer:  Peripheral neuropathy both feet: burning/stinging, pain, redness. Erythromelalgia is best description. 2012 spring: dry eyes with Salzmann Nodular degeneration. 2012 summer:  I've had blood work done all along the way, but a full work up 2012 shows ANA Positive at 1:40 with speckled patterns.  Negative SSA and SSB. This is the last time I've had blood work. 2013 fall: I developed chronic sinusitis:  dizziness, fatigue, ear fullness. Subsides after a few months. 2013 spring: I develop GERD. Constipation has been ongoing for several years now. 2014 fall:  chronic sinusitis returns with dizziness, fatigue, ear fullness; and has not subsided. 2104 Peripheral neuropathy comes and goes in both knees. 2015 winter: I begin... Read More →

Black Tongue and Sjogrens

Q:  Hi Dr Carteron, Sorry to bother you but I am confused and getting nowhere with my GP.  I have suffered the following for about 5 months - dry mouth, bad taste, increased thirst, sometimes very dry throat with cough, fatigue, pain around the glands under my chin, headaches, sore eyes and a discoloured tongue ( ranging from black to brown). I have had fibromyalgia for years but think I may have the beginnings of Sjogrens syndrome.  Awaiting test results from a lip biopsy.  Can you receive negative test results but still have Sjogrens?  Do you have any advice for me please - been feeling unwell for a while now. Many thanks in advance for your time. A:  One could have a negative lip biopsy and still have Sjogrens. There are Classification Criteria that are used to define Sjogren's, but these are primarily designed to appropriately select patient's to enter into Clinical Trials. The criteria are evolving, but in general include symptoms and objective signs of dry eye or mouth and either... Read More →

Sjogren's Disease and Systemic Symptoms...Is Breast tenderness one of them???

Q:  I was diagnosed with S.L.E. and Sjorgrens by Dr. Victoria Werth many years ago in addition to being a part of a study that she was doing. I have extensive allergies including those to medications.  I have had 7 sinus surgeries. My ENT Doctor prior to moving to TN was Wayne Koch, MD at Johns Hopkins.  I was referred to Dr. Huston at Vanderbilt. Since moving here the Plaquenil has kept the skin issues to a minimum however, the Sjorgrens has become almost unbearable. For years I have dealt with severe mouth dryness, overheating and reflux/Barrett's esophagus.  My eyes are drying out. I have been told that my salivary glands are not secreting saliva after several years of terribly painful swollen glands.  I now have joint pain and carpal tunnel in both hands.  My main concerns currently, are the extreme exhaustion, intermittent severe pain in both breast and glands swelling, asthma and nagging pain in my rib cage.  I have had CT scans of the chest whereas nothing was found.  I am... Read More →

Shingles Vaccine (Live)..in Sjs...Vaccinate or Not???

Q:  Have had serious bouts of SJS in the past. I am well and have not had a reassurance in few years, Should I have the Shingles Vacine? Is this a danger for me? Thank you. (sjs and male) A:  I am not sure...Previously, I have responded based on CDC recommendations NOT to given LIVE vaccines (including the Shingles vaccine) to those with compromised/dysregulated immune systems (i.e. autoimmune). However, there have been several publications/some studies over the last several yrs suggesting we should vaccinate prior to starting immune modulating drugs (mostly in RA). Also, there have been some publications suggesting vaccination with live vaccines might be OK, as long as the autoimmune patient is stable and not flaring... Now that awareness of Shingles and post-herpetic neuralgia has increased, and vaccinations (in US) are being given in pharmacies and other point-of care locations....many more people are getting various vaccines. I have had several patients with various autoimmune diseases... Read More →

Emotions Surrounding a Possible Diagnosis of Sjs

Q:  My son lives in Medford, Oregon and his primary care physician has diagnosed him with probable Sjrogren's Syndrome.  Luke has been very sick the past two weeks. He is getting an appointment with a doctor who deals with autoimmune problems but has not had the appt. yet.  Do you know of a doctor in Oregon who you would recommend to treat Sjogren's?  We are feeling quite desperate as our son is very sick with swollen saliva glands, no saliva, extremely dry eyes and severe pain. He says oxycodeine has taken his pain (ear vacinity) from a 10 to only a 7.  Thank you for your help. A:  First step is getting the best diagnosis at a given point in time. At present, for Sjogren's it may take the presence of "classic antibodies", SSA and/or B, and/or a lip biopsy showing focal lymphocytic sialadenitis. Best place for a salivary gland biopsy is the UCSF Sjogren's Syndrome Clinic (Oral Medicine) in San Francisco. Don't have a specific physician referral in Medford OR, but suggest checking... Read More →

NMO Neuromyelitis Optica

Q:  Hi I been having NMO for 3yrs an within the past week my eyes have been very dry that they hurt nothing is working at all when I go to sleep an wake up my eyes are crusted together what does this mean A:  NMO (Neuromyelitis Optica, Devic's disease) is a demyelinating disease of the CNS (central nervous system) associated with an autoantibody, Aquaporin 4 Ab. It affects the spinal cord (can cause Transverse Myelitis) and Optic nerve. It may be associated with other autoimmune diseases, like Sjogren's. Would discuss your new symptom with your Neurologist and Ophthalmologist. They may want to refer you to a Rheumatologist for further evaluation. Reference for NMO and Sjogren's: http://www.ncbi.nlm.nih.gov/pubmed/22568275 dr c  Read More →

Relapsing Polychondritis and Sjogren's

Q:  Hello, My wife has Sjogren's disease with soft tissue and cartalige involvement. We suspect but hope that she does not have relapsing polychondritis. Do you know of any one or center that specializes in this complicated type of auto immune syptoms? Thank you so much! A: Most major academic university medical centers will have some form of Specialty Clinic that would be a good starting point, depending on where you live. Most of them will be within the Rheumatology - Immunology division of the Department of Medicine. One Clinic where they are also doing basic immunology research on the cause of RPC (relapsing polychondritis) is at Virgina Mason Medical Center in Seattle WA. https://www.benaroyaresearch.org/our-research/research-programs/translational-research-program/relapsing-polycondritis/relapsing-polycondritis-clinic dr c    Read More →