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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.

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 →

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 →