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

Managing Sjögren’s Vasculitis

Posted on Sun, Oct 30, 2016

Ask the Expert:
“How can I manage my vasculitis so that it doesn’t become too severe?”

Vasculitis usually manifests with purplish skin lesions on the legs and sometimes the trunk. It is usually associated with high levels of gammaglobulin in the serum. The skin may become easily irritated and even break down in areas where numerous lesions develop. The skin around the ankles is most susceptible. Skin break-down and ulcerations may form.

Although severe vasculitis from Sjögren’s may require hydroxychloroquine (Plaquenil), oral corticosteroids and immunosuppressive medications, milder forms can be managed with simple conservative measures.

TMS October 2016.pngSkin breakdown occurs with greater frequency when there is fluid accumulation around the ankles so measures that minimize edema (excess fluid accumulation) in the legs can be helpful. Such measures include elevation of the legs and the use of support hose. When sitting, your legs should be propped up on a chair and not left dangling for too long. Support hose to control edema should be of the above-knee variety. Hose that bunch up below the knee may actually act like a tourniquet and impede blood ow in the legs making edema worse.

Mild trauma to the skin of the legs can also favor skin ulceration so wearing pants may provide an extra layer of protection. Edema can also be controlled with diuretics. Some patients with vasculitis may benefit from low dose aspirin to keep the blood vessels open.

Of course these conservative measures should also be applied in instances when immunosuppressive therapy is needed. Consult with your doctor if diuretic therapy or low dose aspirin is right for you.

by Herbert S. B. Baraf, MD, FACP, MACR

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Plaquenil, Sjogren's, Treatment, Dry Skin, Immunosuppressant, Ask the Expert, Hydroxychloroquine, Vasculitis

Patients Sharing with Patients: Holiday Tips

Posted on Mon, Nov 30, 2015

SSF_Holiday_Blog.jpg

The holidays can be a very happy and joyous time reuniting with family and friends, but it can also be a very stressful time, especially when living with a chronic disease like Sjögren's. 

Holiday stresses and winter weather can have a negative effect on a person's symptoms and living with Sjögren's means learning what your new normal is. This is why it's particularly important during the busy holiday season to make sure you listen to your body and do not neglect your mental or physical health. 

The SSF knows that some of the best tips come from patients, which is why we want to hear from you about how you cope with additional stresses and symptoms during this time of year. 

  • How do you manage fatigue with a busy holiday schedule?
  • What is your best tip to make holiday traveling easier?  
  • What advice would you give to a fellow patient dealing with the depression during the holidays?
  • How do you explain Sjögren's and what symptoms you're dealing with to family & friends?
  • What cold weather problem do you find the most difficult when managing your Sjögren's (such as a Raynauds flarenasal drynessdry skin or other symptom) and how do you effectively cope? 

Just as one product may work well for one patient but not another, you will need to discover what coping techniques works best for you. Please comment below and share your suggestions.

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On behalf of the SSF family, we wish you a healthy and joyous holiday season! 

Topics: Depression, Dry Nose, Fatigue, Dry Skin, Top 5 Tips, Dry Nails, coping with sjogren's, Flare,

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: Tips to Cope with the Winter Blues

Posted on Thu, Jan 30, 2014

Weather can affect everyone differently, and some people prefer colder temperatures. Although when living with certain chronic illnesses, like Sjögren's, winter weather can have a negative effect on a person's symptoms, such as joint stiffness or dry skin, and also on a person's mood. 

Learning to live with Sjögren's is learning what your body's new normal is- this includes taking care of both your physical and emotional symptoms.  

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!

winter blues party
  • What cold weather problems do you find the most difficult when managing your Sjögren's and how do you deal with them effectively?
     
  • When the winter blues hit, how do you manage to say positive when also coping with Sjögren's?
     
  • What advice would you give to a fellow patient dealing with the depression?
     

Just as one tip may work well for one patient but not another, you will need to discover what tips and coping strategies work best for your body. That is why tips and suggestions of all kinds are welcome and encouraged as a way to help fellow Sjögren’s patients.

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

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Topics: Depression, Symptoms, Sjogren's, Joint Pain, Fatigue, Dry Skin, coping with sjogren's

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