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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.

Interferon alpha 2 in Sjogrens 1999+

Q:  I'm new to your forum.  I have SS, with autonomic neuropathies.  I'm one of the few males with this syndrome.  The list of autonomic dysfunction symptoms I have is fairly long.  I've researched much about this disease since I was diagnosed. Stating that, I stumbled across some journal entries about treating SS with oral interferon A.  My rheumatologist, and neurologist had no knowledge of this.  But my neurologist sent me a note recently letting me know he researched this after our last appointment, and is open to trying this therapy.  I've been treated with IVIG for the past year, and recently an infusion of Rituxan.  He wants to wean me off of IVIG, and give the Rituxan time to work.  IF I don't get good results we'll discuss further the interferon route. My question is do you have any experience with interferon a, given orally?  Or do you know of this treatment for SS, and can offer any advice. Thank you in advance. A:  There were studies with oral interferon alpha... Read More →

What's Not Sjogrens

Q:  Hi Dr. Carteron,  I've been diagnosed with Primary Sjogrens, but have other illnesses, too.  Recently, I have been waking up Every day from the most horrendous pains in my very low abdomen and my low back. I'm unable to move due to the pain increasing when I try, so it takes me around 30 minutes to rock & roll until I can move. Once up, the pain subsides somewhat, but remains all day, every day to a lesser degree. Have reported to GP, who discovered in 3 months, I've lost 2 stones in weight. This is completely without trying, although it is much needed. I am curious to know whether you'd think this would be connected to the Sjogren's, or if its likely to be something else.  If you think it is connected, what would be your thoughts on treatment, testing, etc.  Thanks for any help you are able to provide me with.  Kind Regards, A:  Weight loss without trying often is a clue of something. It would be unusual to be caused by Sjs alone.   Lower abdominal pain could... Read More →

Do Dental Infections, Tooth Extraction, or Dental Anesthesia Trigger Dry Mouth?

Q:  I was diagnosed with Sjogrens in 2007.  Dry mouth was one symptom that was not a major problem for me until 6 weeks ago.  At that time I developed a terrible oral infection from a bad capped tooth.  An oral surgeon drained the infection and 10 days later the tooth was extracted.  Ever since I had that infection and extraction my dry mouth and throat is off the charts!  My mouth and throat feel bone dry and I can't get relief.  What could have happened from that infection and the two procedures I had to trigger this horrendous dry mouth problem? A:  I think it is possible. I have seen patient's who describe similar events. Not clear, at present, if related to the infection, the pain/trauma of the extraction, or the anesthetics (epinephrine/lidocaine) that need to be used. Hopefully, it will gradually improve the further you are out from the episode. dr c  Read More →

Can Massage or TENS Cause Pain?

Q:  Hi Dr Carteron, recently I was told I have Sjögren's and I was told to see a RA doctor. I haven't found one close yet. I have severe feet pain and have been seeing a neurologist and he said I had minimal nerve damage and he had no clue why my feet were so bad. I told him about the Sjögren's diagnosis and he thinks that may be the reason for my feet pain. The question I have for you is does massage or tens unit normally cause more pain? I was in therapy and it literally made me sick. The pain was so severe. Is massage not a good idea? A: Don't know that it is common...but I have had patient's tell me that massage or acupuncture caused them pain. Sometimes, those patient's can tolerate acupressure. Would think you could try gentle massage and see what your response will be. dr c  Read More →

Telemedicine - International

Q:  Hello Dr. Carteron, having seronegative Sjogren's presents a problem when you need a diagnosis.  Thankfully I have a doctor here in Chicago that gave me the diagnosis.  But I have a friend in Canada who has gone through so much hell trying to get a diagnosis.  Can you, or another medical professional that you know, consult and help deliver a diagnosis?  Thank you very much. A:  In the US, physicians are licensed in each State. To render a medical opinion, the patient must be seen in person to "establish" care. The person could elect to travel to see a specific physician or clinic. There is a Sjogren's Foundation in Canada and a list of Canadian support groups on the US Sjogren's Foundation web site http://www.sjogrens.org. Hopefully, your friend can find a Sjogren's Specialist locally to render an opinion. dr c  Read More →

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 →