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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.

New Diagnosis...many Q's

Q:  Hello, I am new to Sjogren's and have spent hours combing various sites and forulm for information but cannot seem to find answers to the following: 1.  Is Sjogren's automatically degenerative? i.e. will my symptoms inevitably get worse than they have been recently ? (unbearable dry mouth / throat with sores), dry eyes, sporadic muscle / tendon pain and weakness. Can they improve /stabilise or does this illness develop with flares and then calmer periods. Presumably tissue damage does occur in the salivary and tear glands or can it improve if the disease is in remission? A:  I don't think we have good data yet. There has been a "presumption" that the process is progressive and leads to damage of tissue. However, some patient's, even with long-standing disease, have improvement in salivary flow after Rituximab treatment.....so there is residual function..ie NOT permanent damage.  I have also seen patient's symptoms fluctuate...may be a severe episode and then improves. Could... Read More →

Reaction to Learning of Previous Dx being made...

Q:  i recently found out I h was diagnosed in 2013 but only just found out I'm feeling very depressed as I already have ra plus renaulds oserprioios and few other things I don't understand what to do this has worried me the sjogrens  any advive would be apreaited A:  I would be upset to learn about a diagnosis that was not conveyed. With the info now in hand, you could shift the focus to learning about the disease, and work through the process of finding  options that improve your quality of life and things you can do to prevent problems in the future. These days there are ALOT of resources online to get started. One place to begin is http://www.sjogrens.org. dr c  Read More →

Thick Secretions in Sjogrens

Q:  I have an aptmt not until September.  I wrote via my clinic website giving my symptoms and asking if I should be getting some blood work done now.  He kind of dismissed that idea and I should just wait six months.  I was referred by my primary dr.  my symptoms - Dry gritty eyes, dry mouth/throat, voice issues-normal-crackly then normal, muscle pain (hips area and arms but moves around), arthritis, GI upsets (IBS), mild reflux, dry nostrils, sores in the nostrils. chronic puffy left eye lid, sometimes red and itchy. Lifelong dry skin, itching from showers and baths. Constipation and diarhrea. I wake up at night with mouth feeling sticky and thick saliva.Often feel sensation of food not going down or sticking on the way down. When the throat feels extra dry, I swallow up stuff - mucus? dry peeling lips. Eliminated liquids that will dehydrate and drink 8 glasses of water a day. Recently parts of molars chipping off. I brush and floss after eating every meal or snack, if I... Read More →

PBC Primary Biliary Cholangitis

Q:  Dear Dr. Carteron, My birth sister was recently diagnosed with Primary Biliary Cirrhosis, with liver damage. In December of 2014 I had an abnormal result of 193 on an ALP test at Stanford.  They retested last summer and it was in the normal range. Historically I have had a high total bilirubin, which has been assumed to be Gilbert's Syndrome Last October I had a 104.7 fever with a UTI, which my PCP noted was likely or soon would become a kidney infection With those risk factors, do you believe I should be tested for the PCB antibody? Thank you, A:  UTI information would not effect my response. With a family history of PBC (primary biliary cholangitis...recent name change), and a history of elevated bili and alkphos, checking a mitochondrial Ab is not unreasonable. Especially, in the setting of a history of another autoimmune disease or autoimmune type symptoms. There is a high incidence of overlap with Sjogrens and PBC. dr c  Read More →

Uninsured Post ACA (ObamaCare)...Gettin' Started

Q:  I am having trouble finding a start to diagnosis without insurance I'm currently unable to work due to symptoms but can't find a way to get properly diagnose without insurance. I have most of the symptoms for Sjögren's but can't figure out where to start I have concidered even going to the ER but not sure if that's the right direction feeling a bit overwelmed. I have tried looking for resources online for Alvin Texas but keep Geting lost in the insurance and maze of information. Any suggestions would be great thank you. A:  Unlikely the ER or an Urgent Care Clinic would be able to even weigh in on a diagnosis of Sjogren's..EVEN..if they have any familiarity with Sjogren's. Baylor has a Sjogren's Clinic..you could check what their charges would be. Could find the local SSF Sjogren's Support Group Leader in your area (www.sjogrens.org), and they may have some local recommendations. The NIH (National Institutes of Health) has a Undiagnosed Disease Program headed by William Gahl... Read More →

Finding a Sjogren's Doctor

Q: How can I find a doctor that knows Sjogren's can be more than just dry eyes and dry mouth? I am living in the Florida panhandle and the two closest cities to me are Tallahassee and Panama City. If you can help I would very much appreciate it. Thank you! A: The Sjogren's Foundation (http://sjogrens.org). They have local support groups in many areas and the Support Group Leaders are happy to share local resources. The Ambassador program is active throughout the country working on educating the local medical and dental community. You can use Google or Pub Med to research medical professionals who have published in the Sjogren's area, and then see where they are located, and if that may be an option for you. Some people travel to integrated Sjogren's Clinics, like on the East Coast...John's Hopkin's or Penn. dr c  Read More →

Sjogrens and Lung Disease

Q: I was diagnosed with Sjogrens in 1997 but rheumy said blood work looks like I had since 1981. I'm 53 female and after 10 month breathing issue told I have scaring both lungs from Sjogrens ( diagnosed dec. 2015) Not on meds  except reflux stuff. Waiting FOREVER to get into  lung doctor and assuming will be put on meds. Is it true that I have less than 5 years to live? All websites say that and I just want to know if it's true. Thank you. A: Very unlikely to be the case. If what you have is one of the types of Interstitial Lung Disease (ILD), the information from High Resolution CT scan (HRCT), PFTs (Pulmonary Function Tests) with DLCO (diffusing capacity of oxygen across the lung tissue to the blood), and sometimes the ECHO (heart echocardiogram) information is needed to assess not only the diagnosis, but the severity/damage. There are treatments available. I suspect you would have gotten a sooner appt with the Lung doctor, if you appeared to be in the highest risk group. So it... Read More →

Medication Decisions

Q: Hi Dr Carteron, I am so delighted to have found your forum, what a fantastic service you provide. I have been having signs of kidney issues due to Sjogrens for about six months and as I also have M.E. for 14 years, (which began with burnout and glandular fever), I have resisted taking medication until now, as I was afraid of the affect it might have on my immune system. I developed symptoms of Sjogrens three years ago, following a prolonged period of stress and managed to control it with somewhat for the first 1.5 years with herbs and colostrum. Then over a year ago, I began to feel very inflamed particularly at night, burnt out in my chest and the blood vessels in my hands and feet became very inflamed. Eight months ago I began to wake with very puffy bags under my eyes, which I never had before, then five months ago I began to pass large amounts of urine very frequently, which would also wake me at night. I am ANA, Rheum factor negative. My other bloods and urine tests have all been normal,... Read More →

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 →