Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Sicca is a word derived from the Latin siccus, meaning “dry.” Dryness of the exocrine glands, particularly the eyes and mouth, is referred to as “sicca syndrome” or “sicca complex” when there is no evidence of autoimmune disease present.  While sicca symptoms occur in the vast majority of Sjögren’s patients, not everyone with these symptoms has Sjögren’s. Because of this, it is important to establish an autoimmune cause for the dryness.  Sometimes other causes may be found, such as radiation therapy to the head, certain medications, or Hepatitis C or HIV infections. If no cause is found, the patient should be followed carefully for possible Sjögren’s because it sometimes takes years for the diagnosis to become clear. 

Dryness from Sjögren’s may affect any organ in the body that secretes moisture. In addition to changing the quantity and quality of saliva and tears, dryness may manifest in the airways, nasal passages, sinuses, throat, skin, and in women, the vagina. Some Sjögren’s patients initially present with recurrent sinus infections, severe vaginal dryness, chronic dry cough, and so on. All types of specialists, not just eye doctors and dentists, need to keep Sjögren’s in mind as a diagnostic possibility, especially when dryness is severe, persistent, or accompanied by systemic symptoms such as fatigue and widespread muscle and joint pain. Dryness can be quite serious, causing dental disease, eye pain and even visual impairment.  However, these issues should not detract from the often missed point that Sjögren’s is much more than sicca syndrome.  Sjögren’s is a serious systemic autoimmune disease that can affect almost any organ in the body. 

-Sarah Schafer, MD

This information was first printed in the April issue of The Moisture Seeker, SSF's patient newsletter for members. 

We hope you find this collection of SSF Patient Education Sheets helpful.

Especially during the busy holiday season, it’s important to make sure you listen to your body and do not neglect your health.

• Airline Travel Tips 
• Sjögren's Identification and Information Card 
• Anti-Inflammatory Diet 
• Brain Fog 
• Brittle Nails Tips 
• Chronic Pain Tips 
• Dry Nose and Sinuses 
• Dry Skin 
• Fatigue Fighters 
• Sex and Sjögren's  
• Sleep Tips 

With winter weather exacerbating many Sjögren’s symptoms, including nasal dryness, the Sjögren’s Syndrome Foundation has been receiving a lot of questions about the use of Vaseline to relieve the pain associated with dryness of the nose and sinuses. 

Below is a Question & Answer on this topic and how inhaling Vaseline, when used to sooth nasal dryness, can affect the lungs. This was taken from a past SSF National Patient Conference talk "Lung Complications & Sjögren’s," by Richard Meehan, MD, FACP, FACR.

Q. I’ve been putting Vaseline inside my nose. I’ve read recently that the grease can get in your lungs and cause a special type of pneumonia. So, is this something that you shouldn’t put in your nose?

A. Well, our ENT physicians don’t like Vaseline. They recommend that people frequent the use of nasal spray, that puts the normal saline back in the nostril. Some of them like to use a little bit of olive oil, but generally it's thought that Vaseline is toxic to the lungs if you inhale it.

- Dr. Meehan

Lung Complications & Sjögren’s by Dr. Meehan

Chief of Rheumatology and Professor of Medicine at National Jewish Health in Denver, Colorado. Dr. Meehan also is Co-Director of the Autoimmune Lung Center at National Jewish Health and a specialist in autoimmune diseases and rheumatoid conditions affecting the lungs.

Lung complications are sometimes the most misunderstood and life-threatening manifestations of Sjögren’s. Dr. Meehan will add to your understanding of the various pulmonary complications and leave you with knowledge to share with your own physician. The audio is taken directly from a talk given at our National Patient Conference.

Member Price: $16
Non-Member Price: $30
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Each talk is 30-40 minutes long, includes the Question & Answer at the end of each talk, and comes with the handouts used by the presenter. 

1. Try a bedroom humidifier, which generally comes in two types. While more expensive, a self-sterilizing unit is ideal in that it continuously sterilizes and cleans the steam prior to admitting it into the air. A more modestly-priced humidifier is adequate but must be cleaned at least twice a week to limit the possibility of circulating fungus in the air. For a Sjögren's patient, an optimal range of humidity is between 55-60% regardless of the ambient temperature.
   
   
2. Enjoy high humidity environments, such as a steam bath, although remember that hot and long baths can dry out the skin.
   
   
3. Avoid medications that increase dryness when possible. Many medications used to treat the upper respiratory tract such as decongestants and antihistamines are drying. Many other medication classes also may contribute to nasal/ sinus drying. When in doubt, check with your physician!
   
   
4. Consider using over-the-counter (OTC) emollients such as Ponaris® to cleanse the nose, particularly if large crusts and debris are present. Also, use OTC nasal drops and buffered saline sprays regularly (as often as every hour) to lubricate the nasal passages and nasopharyns. Additionally, OTC gels such as Rhinaris® and AYR® work like sprays but last longer and are recommended particularly at night prior to going to sleep.
   
   
5. Discuss the prescription medications Salagen® and Evoxac® with your physician. These have been shown to help Sjogren's patients with dry mouth, and potential added benefits for dry nose, sinuses and nasopharynx should be considered.

Share with us below what tips you’ve found the most helpful when treating symptoms associated with dry nose and sinuses.