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

The Sun & Sjögren’s: How to protect yourself

Posted on Tue, Jun 30, 2015

Sjögren’s patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin.

In response to the sun, Sjögren’s patients can experience skin rashesocular sensitivity, pain, and disease flares. Sun sensitivity with Sjögren’s is associated with the autoantibody SSA/or Ro. Below are a few tips to help protect yourself this summer and year-round. 

  • Protect your skin and eyes through use of sunscreen, UV-protective lenses/sunglasses, ultraviolet light-protective clothing, hats, and non-fluorescent lighting. Sun-protective clothing is designed to protect your skin from UVA & UVB rays and is more reliable than sunscreen.
  • SSF_Sun_and_Sjogrens_TipsConsider purchasing UV-protective car and home window tinting and films (which come in clear.)
  • Wear sunscreen on areas not covered by sun-protective clothing, such as the neck and ears.
  • Read sunscreen labels and look for the words “broad spectrum,” which protects from both UVA & UVB light. Note that the SPF ratings refer only to UVB rays. 
  • Use plenty of sunscreen with a higher number SPF. Most people only use about 1/3 the recommended amount of sunscreen. This reduces the benefit of the SPF rating.
  • Remember to reapply sunscreen because water, humidity and sweating decrease sunscreen effectiveness.
  • Investigate whether UV-protective clothing and eyewear, window shields, and sunscreens are eligible for reimbursement under your insurance plan or Flexible Health Care Spending Account. 

The SSF would like to thank Mona Z. Mofid, MD, FAAD, for authoring this information that was first published in The Moisture Seekers, SSF's member newsletter, and as an SSF Patient Education Sheet.

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Topics: sun and sjogren's, Symptoms, Sjogren's, Dry Skin, Top 5 Tips, Makeup Tips, Chronic Pain, Flare,, Ocular Pain, Skin Rashes

Top 5 Tips for Dry Skin

Posted on Thu, Jun 18, 2015

Dry skin often is overlooked as a major feature of Sjögren’s but deserves greater recognition as a frequent issue for patients. Dry skin can occur as the result of an immune dysfunction and destruction of the structures, which moisturizes and lubricates the skin – a process similar to that which causes dry mouth and dry eye in Sjögren’s

dry_skin1-1These skin structures include the hair and oil glands as well as sweat glands. Once destroyed, these oil and sweat glands cannot be restored. Although most common in fall, winter and early spring, dry skin occurs throughout the year. Areas most often affected are legs, arms and abdomen (especially the beltline/waist).

Your dermatologist can be your best resource and may be able to give you samples of products to try. Here are some basic dry skin survival tips that may help: 

  1. Use gloves when you are using strong soaps or chemicals to clean. One way to get in the habit is to keep a pair of gloves in several areas (i.e. kitchen, bathroom, garage).
  2. Terry robes will dry you gently. Or after the shower, let yourself dry naturally to let the water’s moisture be absorbed by your skin.
  3. Use warm, not hot, water for bathing and use soap sparingly (shampoo might also be drying to the rest of your body in the shower).
  4. After bathing, apply lotion as soon as possible to seal in moisture.
  5. Use a humidifier, especially if you have forced-heat, which is especially drying (For Sjögren’s patients, an optimal range of humidity is between 55% and 60% regardless of the ambient temperature). 

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Topics: Sjogren's, Treatment, Dry Skin, Top 5 Tips, Makeup Tips, coping with sjogren's

5 Tips for Dry and Brittle Nails

Posted on Thu, Jan 08, 2015

Sjögren's is a systemic disease, affecting the entire body. While the disease's four hallmark symptoms are dry mouth, dry eyes, fatigue and joint pain, symptoms vary from person to person.

Although no clear association between Sjögren’s and nail disorders has been reported, Sjögren's patients frequently complain of this problem. Many different dermatologic conditions including some autoimmune disorders, infections, dryness and certain medications can affect nails.

Brittle nails are characterized by hardness, peeling, crumbling, fissures, excess longitudinal ridges or lack of flexibility of the finger and toe nails. This sometimes causes pain and interferes with normal daily activities.

Here are some tips to help:

  1. Keep the nails short. This prevents the nails from catching on things or acting as a lever and causing further damage.
  2. Protect the nails when performing wet work (like washing dishes) by using rubber gloves and cotton glove liners.
  3. Avoid excess contact with water or chemicals (including nail polish remover) which can cause dryness.
  4. Use moisturizer on your nails multiple times per day and reapply the moisturizer after your hands come in contact with water. You can use the same moisturizer used for your dry skin.
  5. Steer clear of cosmetic products such as artificial nails and nail wraps which can cause damage.

Talk to your Dermatologist:

Nails pic 2  * If your dermatologist approves, try a course of biotin for your have brittle nails.
 
  * If you're diagnosed with a fungal infection of your nails, your dermatologist can discuss a variety of treatment options which are available.

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The SSF thanks Adam I. Rubin, MD for authoring these tips. Dr. Rubin is Director of the Nail Practice & Assistant Professor of Dermatology, Perleman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.

Topics: Symptoms, Sjogren's, Treatment, Dry Skin, Top 5 Tips, Dry Nails, Makeup Tips

Patients Sharing with Patients: Makeup and Skin Care Tips

Posted on Tue, Jan 22, 2013

Sjögren's is a systemic disease with its symptoms felt throughout the entire body. While dry skin, dry nails and dry hair are not among the serious manifestations of Sjögren's, they are prevalent in many patients’ lives.

Learning to live with Sjögren's is learning what your body's new normal is- including what type of daily skin products and makeup one uses. Recently the Foundation has received a lot of questions about this topic and since some of the best tips the Foundation knows have come from patients, we want to hear from you!

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  • What makeup and skin care products have you found that work well with your Sjögren's?

  • What type of shampoo would you recommend?

  • As a male patient, what aftershave or face moisturizer do you use?

  • Is there a nail polish that works best for you?

Just as one type of eye drop may work well for one patient but not another, you will need to discover what works best for your body.

Please comment below and share with us what you would suggest.

 

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Topics: Sjogren's, Top 5 Tips, Makeup Tips, coping with sjogren's

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