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

9 Ways to Avoid Care Giver Burnout

Posted on Fri, Jun 29, 2018

The Sjögren’s Syndrome Foundation knows how caring for someone with a chronic illness, like Sjögren’s, can be very rewarding but it can also take a lot of out of you - physically, mentally and emotionally.

We encourage you to share this article with a friend, spouse or family member who helps support you with Sjögren’s and talk about any questions that this article brings up for either of you.

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9 ways to prevent and manage burnout

Here are some tips on preventing and dealing with caregiver burnout. Always remember that if you want to take care of someone else in the best way you can, you must take care of yourself first!

Talk with someone. Find a person you can talk with about your feelings, such as a close friend, family member or colleague. You may want to seek professional help—speak with a therapist or social worker who can understand what you’re experiencing.

Write it down. Use a journal as a way to release your thoughts and feelings. Record your fears, impressions, sense of confusion and more.

Join a support group. Share what you’re going through with others in a similar situation. Whether they meet online or in person, these groups offer a great way to meet people who will understand what you’re feeling.

Make time for yourself. Just because you’re a caregiver doesn’t mean you shouldn’t make time for yourself. Enlist a friend, family member or home health aide to relieve you of your duties. Still can’t get out? While your loved one is sleeping, try drinking a cup of tea, soaking in the tub or even sur ng the Internet to relax.

Get educated. Learn as much as you can. The more you know, the more you’ll be prepared for appointments, what’s ahead and the like.

Recruit help. You don’t have to do everything yourself. If people offer help, accept it. If they don’t offer, ask them whether they will lend a hand; they’ll likely be happy to assist you. Ask a family member to shop for groceries and have a neighbor pick up a prescription. The extra hands will enable you to focus on your loved one and yourself.

Have people come to you. Make your life as easy as possible. Have dry cleaning picked up and delivered. Find a hairdresser who makes house calls. Order your groceries online and consider hiring a cleaning service.

Stay healthy. It’s critical that you see to your own needs so that you can be in optimal shape for the sake of the person you’re caring for. Eat a healthful diet with lots of fruits and vegetables, get plenty of sleep, and exercise at least 3 to 5 days a week.

Learn to laugh. Laughter really is one of the best medicines, so rent a silly movie, read a funny book or magazine or call a friend with a good sense of humor to find a way to let loose and chuckle.

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This article, written by Stacey Feintuch and reviewed by Health Monitor Advisory Board, was first printed in The Moisture Seekers, SSF's patient newsletter for members, and first published by Health Monitor. 

Topics: Treatment, Sjögren’s, Care Giver Burnout

New Sjögren’s Clinical Trial Locations

Posted on Thu, Jan 18, 2018

Steven_Town_Hall.pngEveryday research is being conducted to unveil new medications, therapies and diagnostic tools for Sjögren’s and its symptoms.  By participating in a clinical trial, you will be helping to potentially uncover breakthroughs that will help Sjögren’s patients worldwide. 

Clinical trials are designed to add to medical knowledge and most importantly, the results of these trials can make a difference in the care and treatment of Sjögren’s patients for generations to come. New clinical trials are investigating possible future treatment options and the SSF is fully committed to the development of new therapeutics that will treat the entire disease, not just one symptom.

These Sjögren’s trials are starting to actively recruit patients and sites open all the time. I encourage you to click on the link below to visit our listing of clinical trial locations and contact the clinical trial study coordinator to learn more.

Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Click here to learn more about  current Sjögren’s clinical trials! 

Topics: Treatment, Clinical Trials, Sjögren’s

Methotrexate and its benefit for Sjögren’s patients

Posted on Wed, Dec 27, 2017

Question_and_Answer.jpgAsk the doctor: What is Methotrexate and what is its benefit for a Sjögren’s patient?

Methotrexate is an extremely important therapy for Sjögren’s and many other rheumatic and inflammatory diseases. Its predecessor, aminopterin was introduced in 1948 as a cancer treatment. By the early 1950’s small studies of aminopterin in patients with rheumatoid arthritis (RA), psoriasis and psoriatic arthritis demonstrated efficacy but the drug was slow to capture the interest of rheumatologists, perhaps because of the landmark discovery of cortisone, also in 1948, one of the first “miracle drugs.”

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In 1962 methotrexate, a modified version of aminopterin, was introduced. Both inhibited the enzyme folic acid reductase, but methotrexate was easier to produce, making it easier to meet the growing demand for its use in cancer treatment. Small, successful clinical trials of methotrexate for RA, psoriasis and psoriatic arthritis followed its introduction and the case for its use in these disorders slowly built. By the 1970’s methotrexate had become a mainstay in treatment of severe psoriasis and psoriatic arthritis treatment, and then in the 1980’s it was adopted as standard management for RA after large-scale clinical trials demonstrated compelling efficacy and reasonably good safety.

Comprehensive guidelines for treatment of Sjögren’s were recently published in Arthritis Care and Research. Methotrexate is prominently featured in these guidelines for the management of inflammatory musculoskeletal pain in Sjögren’s patients. It should be noted that the arthritis in Sjögren’s may be indistinguishable from that of RA and in some patients the overlap of these two dis- orders is considerable. Patients whose arthritis is poorly controlled with non-steroidal anti-inflammatory drugs (NSAIDs), low doses of steroids and Plaquenil (hydroxychloroquine) are often managed with methotrexate.

Methotrexate is usually taken just once a week in tab- let form. Some patients take it as a weekly injection. The dose is usually steadily increased during the first two or three months of treatment until a maintenance dose is reached. Patients notice a gradual and meaningful reduction of joint swelling, pain and stiffness as the drug takes hold. Improvement may be noticed as early as 6 weeks; the full effect tends to be appreciated at three months. Systemic complaints such as fatigue, weakness and anemia may all improve on treatment.

Side effects of methotrexate are varied. It is a drug that must be monitored closely by a patient’s physician. Common complaints consist of mouth sores, stomach upset, loss of appetite, fatigue or headache. Some patients notice mild hair loss, more of a thinning, usually more noticeable to the patient than to friends or family. Some patients develop a cough or low grade fever. Rarely, a pneumonia-like syndrome can complicate treatment.

Methotrexate can be irritating to the liver. Patients taking methotrexate should avoid drinking alcohol and need to have liver function tests performed by their physician on a regular basis. The bone marrow can be suppressed by methotrexate and blood counts need to be checked regularly as well. Use of the B vitamin folic acid is recommended for all patients taking methotrexate to reduce the risk of side effects.

Patients on methotrexate need to stay in close communication with their physician and should promptly inform their doctor about a cough, fever, mouth sores or loss of appetite.

Despite all of the concerns about side effects from methotrexate, this drug has been quite well tolerated by most patients. Most importantly, methotrexate is a very effective and life-altering therapy for many patients.

by Herbert S. B. Baraf, MD, FACP, MACR Clinical Professor of Medicine, George Washington University

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

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Comment below and let us know what questions you would like answered in upcoming issues of The Moisture Seekers.

Topics: Symptoms, Treatment, Methotrexate

Sjögren’s & Kidney Disease

Posted on Wed, Nov 29, 2017

by Philip L. Cohen, MD, Professor of Medicine, Temple University School of Medicine 

SSF TMS.pngAbout 5% of people with Sjögren’s develop kidney problems. In most of these patients, the cause is inflammation around the kidney tubules, where urine is collected, concentrated, and becomes acidic. The infiltrating blood cells (mostly lymphocytes) injure the tubular cells, so that the urine does not become as acidic as it should. This condition, called distal renal tubular acidosis, is frequently asymptomatic, but can cause excessive potassium to be excreted in the urine, and may lead to kidney stones or (very rarely) low enough blood potassium to cause muscle weakness or heart problems. Very occasionally, injury to the renal tubules can cause impairment in the ability to concentrate urine, leading to excessive urine volume and increased drinking of fluids (nephrogenic diabetes insipidus).

A smaller number of patients with Sjögren’s may develop inflammation of the glomeruli, which are the tiny capillaries through which blood is filtered to produce urine. This may cause protein to leak into the urine, along with red blood cells. Sometimes a kidney biopsy is needed to establish the exact diagnosis and treatment. Treatment options may include corticosteroids and immunosuppressive drugs to prevent loss of kidney function.

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

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Topics: Symptoms, Treatment, Immunosuppressant, #ThisIsSjögrens, Kidney Disease, Urine, Sjögren’s

Sjögren’s Top 5: What Your Rheumatologist Should be Monitoring For

Posted on Tue, Oct 31, 2017


Daniel Wallace.pngPatients with Sjögren’s usually see their autoimmune treating physician several times a year. Mostly, they are rheumatologists, but can also be primary physicians, internists or subspecialists such as interested pulmonary or hematology doctors. In addition to taking a history, performing a physical examination, or drawing blood tests, are there things that should be specifically looked at or monitored for? This article reviews the top five items.

1. Is there evidence for extraglandular Sjögren’s?

Some people with extraglandular Sjögren’s may have interstitial lung disease, renal tubular acidosis, swollen lymph glands, or inflammatory scarring of the bile ducts (biliary cirrhosis). Being identified with extraglandular Sjögren’s usually warrants systemic immune suppressive therapy with agents such as azathioprine, methotrexate, cyclophosphamide or rituximab. The treating physician should use their tools to screen for the spread of Sjögren’s to new areas with imaging or laboratory testing, which allows one to be proactive and treat the disease early.

2. Screening for lymphoma

Over a 15-20 year period of observation, 8-15% of Sjögren’s patients develop a lymphoma. Screening for symptoms of early lymphoma include asking a patient about swollen glands, fevers, weight loss and new onset of fatigue. A physical examination can detect lymph nodes, evidence for a “wasted” appearance, or an enlarged spleen. I perform a serum protein electrophoresis (a $30 blood test) on my Sjögren’s patients every 6 months. Often, early lymphomas can be detected with the development of an extra protein on this determination, which is known as a “MGUS” or monoclonal gammopathy of uncertain significance. Most Sjögren’s associated lymphomas are of a specific variety known as “MALT” that, if identified early, responds well to treatment.

3. Looking for overlapping Sjögren’s

Sjögren’s patients can have features of other autoimmune conditions such as rheumatoid arthritis, inflammatory myositis, biliary cirrhosis, scleroderma, Hashimoto’s thyroiditis or lupus, while still being “mostly” Sjögren’s. These features may warrant certain anti-inflammatory interventions. This would include corticosteroids for inflamed muscles, drugs that promote more oxygen to dilate the vessels of the hands for individuals with Raynaud’s (often seen with scleroderma or lupus), approaches that halt the development of erosions (bone destruction) with rheumatoid arthritis (e.g., anti-TNFs), ursodiol for biliary cirrhosis, antimalarials for subacute cutaneous lupus rashes in anti-SSA positive patients or thyroid. Identification of a secondary autoimmune overlap can often explain symptoms that may be profound but are not a part of Sjögren’s.

4. Don’t unnecessarily treat Sjögren’s for symptoms that are not related

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Sjögren’s patients may have high blood pressure, depression and diabetes, as does 25% of the United States. Medications given for these conditions can make dry eye or dry mouth symptoms more severe. Treating such patients with anti-inflammatory medications or diuretics (water pills) is not advisable. Before altering one’s Sjögren’s medications or their environment, the physician should strive to rule out co-morbidities or co-existing circumstances that may seemingly worsen Sjögren’s symptoms. 

5. Screening for head and neck emergencies or ares associated with non-extraglandular Sjögren’s

Patients with Sjögren’s whose disease is confined to the salivary glands, eye, head and neck areas occasionally develop complications, which may mandate emergent treatment. These include acute inflammation of the parotid gland (parotitis, or Mikulicz’s syndrome, with either a stone or focus of inflammation, treated with corticosteroids), corneal ulcerations, blocked salivary ducts (affecting the mouth), and dental caries or abscesses. Most Sjögren’s patients see a dentist 2-3 times a year to get their teeth cleaned, and are often frequent return visitors to their otolaryngologist (ENT doctor). 

In summary, screening for the five features reviewed above, can prevent or promote early treatment of the overwhelming complications with Sjögren’s.

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

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Topics: Depression, Treatment, coping with sjogren's, Raynauds, Rituxan, Lupus, Lymphoma, Methotrexate

Headaches and Sjögren’s

Posted on Thu, Aug 31, 2017

Headaches and Sjogren's.png

Sjögren’s is a systemic autoimmune disease often characterized by dryness of the eyes and mouth and accompanied by chronic fatigue and musculoskeletal pain. Over half of Sjögren’s patients experience systemic symptoms, some of which can involve the nervous system. One of the most common symptoms involving the nervous system is headache. Headaches are a common complaint in healthy people who do not have an autoimmune disease. Some of the most common types of headaches include tension type headaches, migraines (with and without aura), and cluster headaches. Headaches are common in Sjögren’s, estimated to occur in roughly 50 to 75% of patients.

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Many Sjögren’s patients may wonder whether or not their underlying autoimmune disease is causing the headaches. Although the answer to this question is largely unknown, some research comparing Sjögren’s patients with healthy controls show that tension-type headaches and migraine headaches, the most common headache subtypes found in Sjögren’s, are more common in those with Sjögren’s than in the general population. Other data demonstrate headaches are more severe in those with Sjögren’s than in those of the general population with depression as a significant influence on headache severity.

Sjögren’s patients may also develop a rare and particularly severe type of headache caused by inflammation of the outer lining of the brain (the leptomeninges) called aseptic meningitis. Although meningitis in general is typically caused by infectious agents like viruses and bacteria, in aseptic meningitis, the inflammation is not caused by infection but rather by other causes such as a reaction to a medication or autoimmune activity. In addition to headaches, aseptic meningitis may also be associated with fever, neck stiffness, and other neurologic symptoms such as double vision. 

In general, treatment for routine headaches is the same in those with Sjögren’s as it is for anyone else including medications such as acetaminophen or ibuprofen. Treatment for aseptic meningitis may also involve glucocorticoids such as prednisone. For those Sjögren’s who suffer from headaches, it is important to discuss this symptom with the primary care practitioner and rheumatologist to see if further evaluation is warranted.

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Depression, Symptoms, Sjogren's, Treatment, coping with sjogren's, Headaches

Ask the Expert: Frequent Bladder Infections and Sjögren’s

Posted on Thu, Aug 17, 2017

Question_and_Answer.jpg“I’ve recently started experiencing frequent bladder infections, could this be associated with my Sjögren’s?"

Sjögren’s is an autoimmune disease that causes dryness in the body, including the vaginal area. Vaginal dryness may result in discomfort during sexual intercourse and an increase in the risk of bacterial and fungal vaginal infections. Painful urination, a common symptom of UTIs, also can occur with vaginal infections. 

If you are find that you are experiencing symptoms similar to those of a urinary tract infection — urinary frequency, urgency and pain — make sure that you ask your doctor for a full urine culture.  These urinary symptoms in the absence of bacteria, could point to Interstitial Cystitis (IC) and should be further investigated with the help of an urologist. 

Research about the overlap of IC and Sjögren’s is limited, however, case reports are beginning to pop up in the clinical literature. And, the Social Security Administration (SSA) lists Sjögren’s in the Social Security Disability Insurance guidelines and highlights IC as one of many overlapping conditions experienced by people with Sjögren’s.

Although a universal cause for IC (such as a biomarker) has not been found, postulated causes include reoccurring bladder infections, pelvic dysfunction, and it being an autoimmune condition.

by Jennifer Zuzelski,  Program Manager/Information Specialist, Interstitial Cystitis Association

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

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Comment below and let us know what questions you would like answered in upcoming issues of The Moisture Seekers.

Topics: Symptoms, Treatment, Vaginal Dryness, Disability, Ask the Expert, Bladder Infections

What You Need to Know About Sjögren’s Clinical Trials

Posted on Tue, Jun 13, 2017

clinical trial.jpgClinical trials are a crucial element in medicine and health care to help develop drugs that will treat or possibly cure certain diseases. Researchers use clinical trials to test if a drug works, how well it works, how safe it is and how it compares to any currently available treatments.

Before a drug can be tested on human patients, it is tested for years in labs. Clinical trials are among the final steps of the drug development process. When drugs are brought to clinical trials, pharmaceutical companies must find enough patients to participate in the research in order to get solid results. The rarer the condition, the more difficult it can be to find the number of patients needed for a trial.

Considerations for Participating in a Clinical Trial

If you have been diagnosed with Sjögren’s and are thinking about participating in a clinical trial, there are several factors you should consider. You can learn about trials taking place in your area on the Sjögren’s Syndrome Foundation’s website by clicking here. When researching details of potential trials that might work for you, find out the risks and benefits of each trial, ask if there are any costs that you may be responsible for associated with participation, and most importantly, talk to your doctor about whether or not the trial is right for you.

One specific consideration for participating in a Sjögren’s study is your diagnosis. In some cases, the diagnostic criteria in the study protocol may be different than the criteria your doctor used in your diagnosis.

Clinical trials can help patients gain access to new drugs and expert medical care, while contributing to important medical research benefiting the larger community. However, patients should not enter a clinical trial without considering the risks and costs to themselves as well – the medication might not work, or might have unpleasant side effects; the time and travel to the study site, time for study visits and absences from work might be costly; and once the trial is complete, the treatment may still need to undergo months of approvals before you can have regular access to it. Additionally, as a patient in a clinical trial, you may receive a placebo drug or therapy instead of the new treatment being studied. Even if you are a patient receiving a placebo, you will still receive basic standard of care and medical oversight for your condition.

How do Clinical Trials Work?

Clinical trials vary greatly depending on the type of study and the treatment being tested. Each trial is usually funded, or sponsored, by a pharmaceutical company, academic research center, or federal agencies such as the National Institutes of Health (NIH). Studies take place across the U.S. and even globally, at hospitals, physician offices, clinics and more – one study might have researchers conducting the trial in many different locations.

Prior to enrolling, you should know how long the study is expected to last, where you will need to go and what you will need to do in order to participate, how your participation will be compensated for – or if you will be compensated for your participation and more. These questions can be answered during discussions with the doctor or staff running the study. If you are still interested in participating, the study staff will usually schedule a screening visit. The details of screening appointments varies from study to study, but all screening appointments are used to determine your eligibility for the trial. Depending on the therapy being studied, screening appointments might look to learn your medical history; run blood, urine or tissue samples; and learn what medications you are currently taking.

Following the screening, the team running the study will contact you to let you know if you qualify for the trial or not. If you do qualify, you will be scheduled for your first study visit, which will help establish the baseline of your participation in the study. Again, the specifics will vary in each trial, but the doctor might run tests or draw labs, as well as give you the drug being studied and instructions for dosing and any reporting you may need to do. This first visit will also give you a chance to schedule future visits.

Throughout the duration of the study, you will need to attend appointments at various intervals. Some studies require regular visits or even hospital stays, while others can be done less frequently. As a study progresses, you may need to be seen less frequently. At each visit, the doctor may re-run tests or labs to compare against the baseline. You also may be given more medication at each visit.

When the study comes to an end, you will need to turn in any unused medication and reporting documents. The doctor will perform tests, labs or procedures similar to what was done during your screening or baseline appointments to see if the drug has made an impact on your health. The doctor may be able to tell you what treatment you received during the study once the study is complete. Once the clinical trial is completed, you will need to revert to your previous physician, if different, and treatment schedule.

Deciding to join a clinical trial can be a difficult decision, but taking part can help researchers learn more about potential treatments for your condition. If you carefully consider the risks and rewards, and arm yourself with information before committing to a study, participating can be a very rewarding experience.

by Kristen Snipes, Project Director at Rho, a Clinical Research Organization

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

Click here to learn more about  Sjögren’s clinical trials

Topics: Treatment, Advocacy, Clinical Trials

Why doesn’t my doctor understand Sjögren’s?

Posted on Mon, Jan 30, 2017

Why Doesn't my doctor understand Sjogren's .pngLike many Sjögren’s patients, I find it disheartening that most doctors remain unfamiliar with the disease. First diagnosed with dry eyes and corneal abrasions at age 18, I had no idea that something bigger was brewing. Over the next three decades, not one of my multiple eye specialists asked about other symptoms that could have led to a timely Sjögren’s diagnosis. By my thirties, I had a classic Sjögren’s picture of dry eyes and mouth, flu-like fatigue, multiple gastrointestinal problems, chronic sinusitis and widespread musculoskeletal pain. Yet no one put the pieces of the puzzle together, and it wasn’t until I experienced incapacitating symptoms that Sjögren’s was even considered.

Lack of provider awareness would be understandable if Sjögren’s was a rare disease. But Sjögren’s is extremely common, affecting approximately 1% of the US population, mostly adult women.1 This is similar to the number of women living with breast cancer.2 I like to call Sjögren’s “the most common disease no one has ever heard of.”

Sarah Schafer.pngSjögren’s can be debilitating. Despite a high disease burden and increased rates of infection and heart disease, Sjögren’s still tends to be “missed and dismissed.” While direct complications such as lymphoma and organ involvement are often successfully treated, these conditions lead to death in approximately 10% of Sjögren’s patients.3,4

After years of advocating for my own care, I am now using my unique vantage point as a physician-patient to teach primary care providers (PCPs) about Sjögren’s. From discussions with recent medical school graduates, I have discovered that Sjögren’s continues to be glossed over as a mild disease, mostly about managing dryness. Medical students are rarely taught these basics: Sjögren’s is common, serious and always systemic.

The following ten points help to explain why “Sjögren’s neglect” persists in medicine. By understanding what is behind the problem, you can better advocate for yourself as a patient.

  1. Sjögren’s is a complicated disease. It takes a high index of suspicion to recognize that scattered and mostly invisible symptoms may all be related. Most Sjögren’s patients experience the triad of pain, fatigue and dryness. While only the dryness can be measured, doctors must take patient reports of pain and fatigue seriously in order to see the bigger picture. 
  1. Sicca (dryness) symptoms are often overlooked in the primary care setting. Sicca is often the best clue to diagnosis. Yet many patients do not mention dryness to their providers, thinking it unimportant or unrelated to their other symptoms. Physicians and patients alike may not recognize that burning, gritty eyes or difficulty swallowing food without liquids are dryness symptoms. 
  1. Sjögren’s patients usually look well, even when they are quite ill. There are no blood tests that correlate with the severity of the disease. This makes it easy for providers to write off patients as complaining or malingering.
  1. Misdiagnosis is common. Symptoms often overlap with more familiar conditions such as depression, fibromyalgia, hypothyroidism and irritable bowel syndrome. Menopause often unmasks Sjögren’s symptoms that have been brewing for years. While these conditions may co-occur with Sjögren’s, PCPs often fail to consider the possibility of Sjögren’s as the major culprit.
  1. Delayed diagnosis. The typical Sjögren’s patient has a delay of nearly three years until diagnosis. True delays are even longer: many patients describe decades of symptoms before things got bad enough to seek diagnosis. Clearly this needs to change. PCPs need to be taught how to recognize Sjögren’s and take the first steps to diagnosis.
  1. Diagnosis can be difficult. Better tests are needed. There is no one test or group of tests that diagnoses Sjögren’s early and accurately. Many patients who do not have Sjögren’s antibodies (“seronegative”) are told they do not have Sjögren’s. Yet 30% of Sjögren’s patients are in this seronegative group. These patients typically experience even greater delays in diagnosis, because the confirming minor salivary gland biopsy is not always done, and it may take years to turn positive. Normal blood tests do not rule out Sjögren’s!
  2. Patients with serious organ system complications are often misclassified as other autoimmune diseases. This happens largely due to the ongoing misperception of Sjögren’s as a mild disease. These patients may never get properly diagnosed, perpetuating the “Sjögren’s is mild” mythology.
  1. Research neglect. Clinical studies of Sjögren’s lag far behind other connective tissue diseases. While this is changing, this lack of research keeps Sjögren’s under the radar of awareness as an important health issue.  
  1. Until 2016, no standard of care existed for Sjögren’s management. Doctors tend to be highly motivated to practice medicine within the standard of practice in their community. The recently published clinical practice guidelines (CPGs) will be a good first step in providing consistent treatment standards for rheumatologists, ophthalmologists and dentists.
  1. Rheumatologists are not always up to date on Sjögren’s management. There are still some rheumatologists- the very specialists who treat Sjögren’s- who do not consider Sjögren’s to be serious enough to warrant treatment. There are too many present day stories of patients with debilitating fatigue and pain who are refused treatment because the rheumatologist told them that “their Sjögren’s was not bad enough.” Hopefully the CPGs will provide incentive for these rheumatologists to treat Sjögren’s patients sooner. Most Sjögren’s experts with extensive clinical experience believe that treatment slows progression and prevents serious complications.  

As a Sjögren’s patient, what can you do?

  1. Make sure you are being followed by a rheumatologist, ophthalmologist and dentist who are familiar with Sjögren’s and its complications. Take a copy of the new clinical practice guidelines to your next appointment.

  2. Understand that PCPs are unlikely to be well educated about Sjögren’s, due to the many reasons listed above. However, if they are caring for you, it is their job to learn about Sjögren’s. I encourage you to refer your physicians and their office team to the SSF and sjogrens.org. The SSF will provide medical professionals with free materials to help them diagnose and manage Sjögren’s.

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

REFERENCES:

  1. Helmick CG, Felson DT, Lawrence RC, et al. National Arthritis Data Workgroup. Estimates of prevalence of arthritis and other rheumatic conditions in the United States, Part I. Arthritis Rheum. 2008;58:15-25
  2. http://seer.cancer.gov/statfacts/html/breast.htm
  3. Brito-Zeron P, Ramos-Casals M, et al. Predicting adverse outcomes in primary Sjögren’s syndrome: identification of prognostic factors. Rheumatology 2007;46:1359-136
  4. Brito-Zeron, P, Ramos-Casals M. Systemic Sjögren’s: More than a sicca disease. http://www.the-rheumatologist.org/article/systemic-sjogrens-more-than-a-sicca-disease

 

Topics: Diagnosing Sjogren's, Sjogren's, Treatment, coping with sjogren's, Clinical Practice Guidelines

How to Talk With Your Family about Sjögren’s

Posted on Thu, Dec 15, 2016

There is a growing body of evidence that rich social support networks are important to overall health, immune function and healing. They improve quality of life and facilitate coping with chronic illness. Conversely, negative social interactions create a stress response that have the opposite effect. Support from family members and close friends can be one of the most important resources for you to draw on when dealing with Sjögren’s. Skillful communication about your illness is key to nourishing the relationships that matter the most to you. This article only attempts to skim the surface of this complex topic. 155698-350x233-talking-with-doctor.jpg

Three characteristics of Sjögren’s create particular communication challenges.

1. Untimely: Sjögren’s is typically diagnosed in the prime of life (40s and 50s), when family responsibilities and careers are in full swing.

While some are lucky enough to have mild symptoms, the majority of patients experience flu-like fatigue, pain and brain fog that demand a new, strict energy budget. Jobs may be lost or hours cut. Frequent medical and dental visits and costly products such as artificial tears strain both schedules and finances. Family dynamics are rearranged by the illness, causing stress, especially if there is little support or strong disagreement about how to meet the new challenge. Single people who become ill may feel particularly vulnerable and alone, wondering how will they ever manage.

2. Uncertain: Early on, many patients have a hard time accepting that this disease will be a lifelong challenge. The sense of loss and fear of long term illness can be profound for both patients and loved ones.

Symptoms may wax and wane for no obvious reason, although they rarely disappear. This can add to confusion and denial. The initial focus of patients and family members is often “how can we x this?” Denial can make adjustment to a new normal even more protracted. Sometimes denial persists for years, until it becomes clear that medications and other interventions cannot bring back “life as usual.”

3. Invisible: Sjögren’s patients tend to look well most of the time, even when feeling quite ill.

The outward appearance of normalcy can make it hard for others to appreciate the severity of your illness. This is made worse when doctors don’t address symptoms such as fatigue and pain that make it a struggle to get through the day. Even though Sjögren’s is quite common, most doctors are not trained to recognize even typical systemic symptoms, and tend to focus on dryness. Some medical websites reinforce this incorrect notion that Sjögren’s is mostly about dryness, rather than a serious systemic disease. When presented with this inaccurate portrayal of the disease, family members and patients become understandably confused. Healthcare providers frequently minimize life-changing symptoms or even become dismissive, leaving the patient feeling powerless or invisible. When family members also fail to understand the devastating impact that Sjögren’s can have, the emotional turmoil can be overwhelming.

As a result of widespread misinformation, patients find themselves needing to become “experts” in their disease. Backed with up-to-date knowledge, it is possible to advocate for care and educate health care providers when needed. An excellent, reliable source of information can be found at the Sjögren’s Syndrome Foundation (SSF) website, www.sjogrens.org. Be sure to read or reread the “About Sjögren’s” section, especially the FAQ. Encourage family members to read it too. It’s really good. It might seem overwhelming and a bit disheartening that you need to learn so much about Sjögren’s, especially early after diagnosis. However, educating yourself will provide essential tools for communication with family, friends and doctors.

Communication with family members

Spouses/partners and other family members suffer grief and loss too. It is important to acknowledge this. Open the discussion early. Ask about their fears regarding the impact of your illness and the uncertainly it creates. Be prepared to revisit this conversation several times. Both you and your significant others will go through loss and grief, although the timing and process is different for each individual.

In spite of your best efforts toward clear, empathic communication with your family, some people may respond with judgment and blame. This often comes as a painful surprise, especially at a time when support feels most needed. Relationship upheaval is typical for people with serious illness. It is important not to blame yourself for the illness, but to develop good self-care with an attitude of deep kindness toward yourself. Attempt to keep lines of positive communication open, but set boundaries to protect yourself from negativity.

While unsupportive family members may eventually shift their stance, the approach of trying to educate them repeatedly after several unsuccessful attempts will only result in unnecessary pain. Just having one or two people in your life who truly “get it” can be enough. Recognize that some people may be good at practical support, but unavailable emotionally. The reverse may also occur.

Practical support tips

Practical support, especially from family members, can go a long way in helping you manage your health. Most Sjögren’s patients can participate in a number of activities, especially when family members take over tasks that are particularly challenging for you to do. It takes some trial and error to learn what you can do without compromising your health. Being a good observer of your unique patterns will help you plan the types of activities and pacing that works for you. Even with careful planning, the unpredictable nature of Sjögren’s will sometimes knock you down when you don’t expect it. It is always good to have a backup plan ready- and soup in your freezer!

Many people are happy to help, but might not ask or could assume you are doing ne if you have a partner or other adults in the home. It can be difficult to ask for help, especially if you are the “can do” type of person. It is good to remember that providing support can be beneficial to both givers and recipients. Sometimes support arrives from people you don’t expect to come through, while those you think of as close friends or family may not provide support.

Examples of useful responses and communication tools

  ♦ If you are unsure of a person’s awareness or interest, you can ask: “I’m not sure how much you know about Sjögren’s- do you want to know more about what’s really going on with me?

  ♦ When someone asks if they can help, try to be ready with a specific request such as stopping by with dinner, running errands, childcare, etc. If you are caught off guard, a good response might be: “Can I get back to you? I could really use help but I am feeling too overwhelmed to think about it right now.”

  ♦ State your limitations and needs, clearly and without apology. If you are too tired to cook, shop or clean, state that and request specific help from household members. For example: “I’m not well enough to do housework right now. Could you please vacuum and clean the bathrooms once a week?” as opposed to the more vague, “I need more help with the cleaning.”

  ♦ Many people go into advice giving mode, offering instant remedies such as the latest diet, various medical regimens, healers etc. This may be motivated by a true desire to help, or it can be a way to distance themselves from your experience. Some possible responses: “Thanks for your concern, I am working closely with my doctor on this,” or “I appreciate your concern. I need to do this in my own way and in my own time. It would be great if you could support my choices.”

  ♦ Dealing with insensitive and judgmental comments, especially if repeated, is difficult. One strategy is to provide the speaker with an opportunity to consider the hurtfulness of their comments, by asking: “Let me understand. Are you saying (repeat hurtful comment)?” The person may back pedal or give their comment more thought. This does not always work. Here are examples of responses to real life comments:

  ♦ “If you just stopped taking all those medications, you would be fine.”

  ♦ Response: “What I’m hearing you say is you think Sjögren’s is not serious enough to require medication.”

  ♦ “If you would exercise/lose weight/eat paleo etc. you would be fine.”

  ♦ Response: “Do you think if I (fill in the blank) my Sjögren’s will go away?”

  ♦ To a more subtle comment insinuating you are not trying hard enough: “I’m hearing you say that if I tried harder that I could do _______ (fill in activity) and still manage my Sjögren’s symptoms.”

  ♦ If responses like this do not work, set boundaries: “It hurts to hear you say this. I am doing my best. Please keep these comments to yourself.”

It can be especially difficult when someone close to you clearly does not understand your illness or support your efforts to take care of yourself. Relationships that were difficult to begin with may become even more painful. Some relationships do not survive the stress of chronic illness. Family members have a limited capacity for emotional or practical support. If you don’t feel supported by those closest to you, being creative about organizing your life, getting support from others, and setting excellent boundaries may be your best strategy. If you are dealing with a close relationship that seems to be faltering, it can be helpful to seek professional support from someone knowledgeable about chronic disease.

Most importantly, know that the news here is not all bad. Many people do step up to the plate, although they may need prompting. Be patient if they are trying to understand; it takes time to adjust and to learn about Sjögren’s. 

by Sarah Schafer, MD and Sjögren’s Patient
Special acknowledgment to Teri Rumpf, PhD and Julia Oleinik, RN for their contributions to this article

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

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

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