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

Living with Chronic Illness: Intimacy & Sjögren’s

Posted on Mon, Aug 01, 2016


handholding_SSF.jpgLiving with a chronic illness, like Sjögren’s, can have physical and emotional affects on a woman's sexuality. However, even with the presence of Sjögren’s, women and their partners can enjoy sexual activity and maintain a state of sexual well being. Be open with your partner about your needs and work together for satisfying intimacy.

Below are the three main reasons of how Sjögren’s can affect a woman's sexuality and tips to help.

Vaginal dryness. Women with Sjögren’s often experience severe vaginal dryness.

  • Vaginal moisturizers are available for daily use and lubricants can be used during intercourse.
  • Vaginal estrogen (hormones) may be right for some women.

Pain. Pelvic pain and pain during intercourse, can have many causes, including Sjögren’s, pudendal neuropathy, and interstitial cystitis. 

  • See your health care provider for an evaluation of why you have pelvic pain. There may not be an “easy” answer, but in many cases a possible cause can be identified and treated.
  • Treating vaginal dryness may improve some pelvic pain. 

Fatigue & mood symptoms. Fatigue, chronic pain and depression can contribute to the daily challenge of living with a chronic illness and affect sexual desire and function.

  • Tell your health care provider if you are feeling depressed. Treating depression may help to improve problems with sexual function.
  • Take care of your Sjögren’s and make time for yourself and things you enjoy. 

This information is from the SSF Patient Education Sheet: Sex and Sjögren’s by Anne E. Burke, MD, MPH

 Thank you to our Conquering Sjögren’s blog sponsor SYLK®.

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Click here to learn more about SYLK®, an FDA-cleared moisturizing lubricant.  

Topics: Depression, Sjogren's, Fatigue, coping with sjogren's, Vaginal Dryness, Pelvic pain, Interstitial cystitis

Clinical Practice Guidelines for Ocular Management in Sjögren’s

Posted on Wed, Jul 20, 2016

July is Dry Eye Awareness Month! During July, the Sjögren’s Syndrome Foundation works to help educate the public about dry eye symptoms, treatment options, and the possible cause being Sjögren’s. We hope you enjoy our July blogs aimed to promote dry eye education and encourage you to share this post.

The Sjögren’s Syndrome Foundation (SSF) has developed the first-ever U.S. Clinical Practice Guidelines for Ocular Management in Sjögren’s to ensure quality and consistency of care for the assessment and management of patients.

The SSF Clinical Practice Guidelines for Ocular Management in Sjögren’s established that, in a given patient, the clinician must determine whether the dry eye is due to inadequate production of tears, excess evaporation, or a combination of both mechanisms. The success of a treatment option depends upon proper recognition and approach to therapy.

Click here to view the SSF Clinical Practice Guidelines for Ocular Management in Sjögren’s and its recommendations.

CPG_Ocular.png

The SSF Sjögren’s Clinical Practice Guidelines initiative is funded fully by the SSF with no corporate or pharmaceutical industry support. The SSF would like to thank our committee chairmen and members of the ocular working group for volunteering their time and expertise to develop these guidelines. We would also like to thank all SSF members and our generous supporters for helping to make the dream of Sjögren’s Clinical Practice Guidelines start to become a reality! 

Click here to view the U.S. Clinical Practice Guidelines  for Ocular Management in Sjögren’s   

Topics: Sicca, Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Punctal Plugs, Clinical Practice Guidelines for Ocular Management, Clinical Practice Guidelines

Dry Eye Awareness Month: Serum Tears & Sjögren’s

Posted on Fri, Jul 01, 2016

July is Dry Eye Awareness Month! The Sjögren’s Syndrome Foundation partners with various organizations during July to help educate the public about dry eye symptoms, treatment options, and the possible cause being Sjögren’s. We hope you enjoy our July blogs aimed to promote dry eye awareness and education.   

Q) I have heard a lot about some Sjögren’s patients finding relief from Serum Tears. What are they, how are they made and will it help me with my dry eye?

SSF_Dry_Eye.jpgA) Topical autologous serum used to treat ocular surface damage from dry eye disease is usually reserved for the most severe cases that have not responded to other treatments, particularly intensive lubricant and anti-inflammatory therapy. Autologous describes the fact that it is taken from the patient themselves; serum describes the component of the blood that is used to prepare the drop. It was first reported to improve dry eye symptoms and signs in 1984, but there are now a number of reports supporting its beneficial effect in Sjögren’s disease. Most often prepared as a 20% topical solution, autologous serum must be prepared by removing blood from the patient’s vein and spinning down the clotted cells to isolate the liquid serum which is then diluted in artificial tears solution into small vials. It is not specifically approved by the FDA. Autologous serum contains fibronectin, vitamin A, cytokines, and growth factors, as well as anti-inflammatory substances, such as interleukin receptor antagonists and inhibitors of matrix metalloproteinases. It is not clear which of these components is most helpful, but significant improvement in symptoms, tear break up time, and surface staining have been reported.

The disadvantages of the use of autologous serum include the issue that it must be prepared by the eye care practitioner under well controlled conditions or by a compounding pharmacy, as well as the need to refrigerate the drops. There is a potential risk of infection if contamination of the solution occurs. The stability of frozen autologous serum has been verified for up to 3 months.

Typically, the serum is applied topically four times daily, and this can be done in conjunction with other therapy including topical lubricants, topical cyclosporine, or oral tear stimulants. The serum does not work well with contact lens wear.

This option may not work for every Sjögren’s patient and thus one will need to find an ophthalmologist or optometrist that is familiar with Serum Tears to accurately gauge the benefits.

-Gary Foulks, MD, FACS

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Ask the Expert, Serum Tears

Sjögren’s Patient Education Sheets

Posted on Fri, Jun 03, 2016

Patient_Education_Sheets.pngSjögren’s patient education sheets are one way the Foundation continues to provide the most up-to-date information to patients and healthcare professionals.

Patient education sheets are one-page flyers written by healthcare providers on various symptoms of Sjögren’s to help provide a better understanding and coping techniques.

New education sheets are added to the Foundation’s website every quarter. Click here to view all of the SSF patient education sheets. Topics include:

  • Airline Travel Tips 
  • Anti-Inflammatory Diet 
  • Brain Fog 
  • Brittle Nails Tips 
  • Burning Mouth 
  • Chronic Pain Tips 
  • Dental Insurance Appeal Letter 
  • Dental Insurance Reimbursement Tips 
  • Dental Tips 
  • Disability Benefits: Tips on Obtaining Them from the Social Security Administration 
  • Dry Nose and Sinuses  
  • Dry Skin
  • Dry Eye Treatments
  • Dry Mouth Treatments
  • Eating Tips for Dry Mouth Patients
  • Fatigue Fighters
  • Health Insurance Tips – Part 1&2
  • Interstitial Cystitis or Bladder Pain Syndrome 
  • Muscle and Joint Pain
  • Neuro Tips
  • Oral Candidiasis (Thrush) in Sjögren’s
  • Raynaud’s Syndrome
  • Reflux and Your Throat
  • Rheumatoid Arthritis
  • Salivary Glands Massage
  • Sex and Sjögren’s
  • Sleep Tips
  • Surgery, Hospitals and Medications
  • Sun and Sjögren’s
  • Tracking Your Symptoms: Work Sheet

Click here to view all of the  SSF Patient Education Sheets

Topics: Sjogren's, Treatment, coping with sjogren's

Ask the Expert: Plaquenil and Sjögren’s

Posted on Mon, May 23, 2016

Question_and_Answer-1.jpgWhat is Plaquenil and what are its benefits for Sjögren’s patients?

Plaquenil (hydroxychloroquine) is a medication that has been used for many years to help musculoskeletal symptoms and fatigue in patients with autoimmune conditions such as rheumatoid arthritis, lupus and Sjögren’s. While there is good clinical evidence demonstrating the drug’s efficacy in rheumatoid arthritis and lupus, there are very few studies looking at hydroxychloroquine as a treatment for Sjögren’s. The studies that do exist show mixed results (some show benefit and some show no benefit) in whether or not the drug is effective in helping with pain, fatigue, dry eyes or dry mouth.

Nonetheless, despite the lack of clinical studies, rheumatologists feel that hydroxychloroquine may have a potential beneficial effect in helping patients with symptoms of fatigue and achiness, which are common complaints in patients with Sjögren’s.

TMS.pngHow the drug works is unclear, but recent research has pointed to an inhibitory effect on toll-like receptors that are proteins involved with inflammation. The good news is that hydroxychloroquine targets the immune system without causing an increase in the risk of infection or cancer that can be seen with other immunosuppressant medications. The typical dose for hydroxychloroquine is 200-400mg per day and is based on a person’s body weight (or if you are overweight, your ideal body weight). While hydroxychloroquine is considered a relatively safe medication, like all medications there are potential risks. These include body rashes that often will itch. The rash typically occurs in the first 6 weeks and is usually mild. In general, the rash will resolve within 2 weeks after stopping the drug. A more severe rash affecting larger areas of the body may occur but is not common. If this type of rash occurs, other medications such as anti-histamines and steroids may be required to help with symptoms.

Over time, hydroxychloroquine may uncommonly have an adverse effect on the retina that can lead to permanent visual damage if not picked up early. In order to protect the eyes, a baseline exam is recommended be- fore starting the drug if you are color blind, have prior retinal problems or have never had a dilated exam (checking color vision is one way the doctor monitors for early damage) or within the first 6-12 months if you have a history of healthy eyes and a recent retinal examination. After the baseline exam, it is recommended that patients get a dilated exam at the minimum of once per year. Retinal problems are more likely to occur after 5 years of use. Newer technologies are available (OCT-optical coherence tomography) that can pick up early changes. If early changes are found on exam, it would be uncommon to have progression of eye toxicity or visual changes.

Other potential side effects include but are not limited to nausea, changes in mood, muscle weakness, skin pigmentation and anemia. While the drug may be used during pregnancy, the potential benefits and risks should be discussed with your doctor.

In summary, if you have Sjögren’s, hydroxychloroquine may be an option to help your symptoms. Because there are other more effective therapies available to treat dry eyes and dry mouth, it is typically prescribed to help musculoskeletal pain and fatigue. Be patient, as the drug may take up to 6 months to see a beneficial effect.

by Scott Zashin, MD Internist & Rheumatologist in Dallas, TX

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Plaquenil, Dry Eyes, Sjogren's, Fatigue, Treatment, coping with sjogren's, Immunosuppressant, Ask the Expert

April is Sjögren’s Awareness Month

Posted on Thu, Mar 17, 2016

April is Sjögren’s Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who live with its numerous daily manifestations.

AprilisSjogrensAwarenessMonthSjögren's is often referred to as an invisible disease, one that, while patients may experience severe discomfort, people don’t physically see as debilitating. This can be extremely isolating for patients and also leads to the great misunderstanding about the seriousness of the disease.

The SSF wants to help close the gap between the reality of living with Sjögren’s and the perception that many non-patients may have with our This is Sjögren's! April campaign.

To help others visualize and understand what it is like to suffer from Sjögren’s, the Foundation will post a different phrase on social media everyday throughout the month of April that reflects what it’s like to live with the disease.  Each phrase will give a small glimpse into what it’s like to live with Sjögren’s and by the end of April we hope these 30 phrases will show the complexity and seriousness of the disease. 

An example:
“I live in constant uncertainty when planning my day because I don't know if or when fatigue will hit me. This is Sjögren's.” 

You are the voice of Foundation and we want to hear from you! 

Please comment below and share with us one phrase that represents what it’s like to live with Sjögren’s. Thank you for your support; together we will help others to better understand Sjögren’s! 

What is Sjögren’s?

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body.  Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas. 

Today, as many as four million Americans are living with this disease and nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children 

Topics: Sjogren's, coping with sjogren's, April Awareness Month

Cold Weather & Raynaud’s Phenomenon

Posted on Thu, Mar 03, 2016

Raynaud’s phenomenon describes a condition where the digits of the hands as well as the feet undergo a change in color often accompanied by pain, numbness and/or tingling.

Raynaud’s is often classified as either primary (Raynaud’s disease) or secondary (Raynaud’s phenomenon). Primary Raynaud’s occurs in the absence of any other associated disorder whereas secondary Raynaud’s occurs in the setting of autoimmune connective tissue disorders (CTD), most often systemic lupus erythematosus (SLE) and scleroderma although it can be associated with any CTD including Sjögren’s. Primary Raynaud’s occurs most often in women between the ages of 15-30. There is often a family history of Raynaud’s. Raynaud’s is caused by constriction of small blood vessels in the fingers, toes and occasionally other sites including the tip of the nose and the ears. This is also known as vasospasm.

RaynaudsRaynaud’s most often occurs in discrete episodes triggered most often by exposure to the cold but also by emotion (fear, anger, excitement) and by certain pharmacologic agents including nicotine and certain medications. Raynaud’s is most often reversible; when the inciting stimulus is removed, the episode resolves. Clinicians classically refer to Raynaud’s episodes as “tri-phasic”. This means that the color change proceeds in 3 distinct phases – white, which represents pallor of the digits when blood flow is reduced secondary to the vasospasm; blue/purple, when the blood pools in the veins, and red, where blood flow is temporarily enhanced at the conclusion of the episode. In addition to the association with autoimmune CTD, secondary Raynaud’s can rarely be associated with sludging of blood in capillaries caused by high protein levels seen in hematologic disorders as well as by vascular diseases such as atherosclerosis. Thus, when evaluating a patient presenting with possible Raynaud’s, the clinician needs to distinguish primary from secondary Raynaud’s. This mainly involves determining whether or not the patient has an autoimmune CTD by clinical exam and lab testing. In addition, a simple test where the capillaries of the nail beds of the fingers are examined using a hand held illuminated magnifying lens is often performed. The finding of irregular, dilated nailbed capillaries is strongly suggestive of an underlying CTD.

Since the vast majority of Raynaud’s episodes are triggered by cold exposure, mitigating the effects of reduced temperatures is a very important component of Raynaud’s management. It is important to realize that a significant portion of Raynaud’s pathogenesis is a reflex involving sympathetic nervous system control of blood vessel contraction. Thus, once the cold-induced reflex occurs, the episode will progress. Therefore prevention of this cold-induced reflex is extremely important especially in colder climates or as cold weather approaches. Patients are advised to dress warmly especially regarding the extremities. Mittens are felt to be superior to gloves since they encourage contact warmth between the digits. Gloves/mittens designed for skiers contain chemical or electric heating elements and may be helpful for certain patients. Emphasis should be placed on donning cold-weather gear prior to leaving the home. It is felt that lowering of core body temperature plays a role in triggering Raynaud’s episodes. Therefore, cold-weather clothing should minimize heat loss and include hats, scarves woolen face masks, and the use of layers.

Since Raynaud’s episodes are reversible, return to a warm environment usually results in resolution of the episode. If a digit remains painful or is persistently pale or blue, then immediate medical attention should be sought. When episodes are frequent or prolonged, pharmacologic therapy should be used. Medications used to treat Raynaud’s include those that dilate blood vessels and such as drugs used to treat hypertension (calcium channel blockers, ACE inhibitors and angiotensin receptor blockers). Pulmonary hypertension medications including sildenafil (Viagra; Revatio) can also be helpful.

by Steven E. Carsons, M.D.

Click here to view tips on how to manage your Raynaud's symptoms from the SSF Patient Education Sheet 

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

Topics: Sjogren's, coping with sjogren's, Raynauds

NIH Hosts Dietary Supplement Database

Posted on Tue, Feb 09, 2016

Did you know that the National Institutes of Health has a database that allows individuals to search the labels of dietary supplements?

SSF_Dietary_SupplementsThe Dietary Supplement Label Database (DSLD) is a joint project of the Office of Dietary Supplements (ODS) and the National Library of Medicine (NLM) of the National Institutes of Health (NIH).

Considering the number of Sjögren’s patients who currently take dietary supplements to aid in the management of the disease, the DSLD could prove to be a very useful tool. An individual can search products, brands and ingredients. This can allow them to review the suggested use of a particular supplement, calories and daily values as well as search other brands and combinations that might be available.

For instance, if a patient is taking fish oil and vitamin D, they could find a combination supplement rather than two separate supplements. This can result in easier maintenance of supplements and cost effectiveness for the patient.

Remember that just because an over-the-counter product is natural, this does not make it safe or appropriate. The SSF recommends that you should always discuss natural remedies with your doctor.

Click here to learn more about Sjögren’s and an Anti-Inflammatory Diet

Click here to learn more about the  NIH Dietary Supplement Database This information was provided by the NIH DSLD web page. 

Topics: Diet, Nutrition, Sjogren's, Treatment, coping with sjogren's, Natural Treatments, Anti-Inflammatory Diet

What the SSF Means to Me

Posted on Mon, Dec 28, 2015

 by, Elizabeth Chase 
 
Elizabeth_Chase_2The Sjögren’s Foundation (SSF) has really been an incredible resource for me. I was diagnosed 5 years ago at age 24 and felt very confused. I had heard of Lupus as my best friend has it, but had no clue about any other autoimmune diseases. When I first searched the word Sjögren’s, the foundation came up. I immediately consumed everything they had to offer and became a member. I then found the Boston support group, and started fundraising for them online. 

When I attended my first SSF National Patient Conference in 2013 I met my life line - the Foundation's Under 40 with Sjögren’s Group Support Group. They are my go-to for everyday questions and are a great support system. Thanks to the Foundation, I have been able to share information about Sjögren’s with my doctors and family. Recently, I've participated in an SSF Walkabout, organized my parents retirement parties as Sjögren’s fundraisers and helped kick off the Boston Sip for Sjögren’s event!

I'm very grateful for the support I have found with the Foundation and the information and resources it has provided me with. This is why I support the SSF! 

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member
 
ssf_logoThe SSF was founded by a patient, for patients and the Foundation will never lose that focus. It is because of your generous support that the SSF continues to soar to new heights on our journey to transform a future of hope for all Sjögren’s patients!

So on behalf of the SSF and our volunteer Board of Directors, I want to thank each of you for sharing your story, attending our events, volunteering your time and donating to our programs. Without you, we would not be able to share the amazing successes that we were able to achieve in 2015 and build on this momentum in the New Year. 
 
Wishing you and your family a Healthy and Happy New Year!
 
Sincerely,
Steve_Sig
 Steven Taylor
Chief Executive Officer 
Donate to Research
 
We encourage you to comment below & share what the SSF means to you. 

Topics: Depression, Sjogren's, coping with sjogren's, National Patient Conference

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,

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