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

Sjögren’s Clinical Practice Guidelines Phase I

Posted on Mon, Nov 05, 2018

CPGs phase 1The Sjögren's Syndrome Foundation (SSF) brought together clinical leaders and Sjögren’s experts in all areas of care to produce and publish the very first Clinical Practice Guidelines in Sjögren’s to ensure quality and consistency of care for the assessment and management of patients.

These guidelines will help doctors and dentists in various disciplines to provide appropriate care to Sjögren’s patients and will ensure that patients receive the best treatment possible.

There are currently three (3) different Guidelines that have been completed and published and they are:

Currently, the SSF is working on Phase 2.The second phase of this initiative will significantly increase the guidance offered on the management and treatment of Sjögren’s. The following topics will be addressed in Phase 2:

  • Systemic Manifestations in Sjögren’s
    (Pumonary; Peripheral nervous system (PNS); Central nervous system (CNS); Lymphoma and other blood cancers; Vasculitis)
  • Oral Manifestations in Sjögren’s
    (Muscosal management and symptom relief; Use of secretagogues; Caries management and restoration)
  • Ocular Manifestations in Sjögren’s
    (Update and expand on the ocular guidelines developed in Phase 1 and TFOS DEWS II Report)
  • Cross-cutting Topics
    (Parotid and lacrimal gland swelling)
Click here to learn more about Sjögren’s Clinical  Guidelines

Topics: Treatment, Serum Tears, Clinical Practice Guidelines, Sjögren’s

Xylitol Sweetener Toxicity in Pets

Posted on Tue, Oct 16, 2018

Question_and_Answer"I use a number of products that contain xylitol (chewing gum, candies, baked goods and toothpaste) and recently heard that this sweetener can be harmful to pets. Can you explain why?" 

Xylitol toxicity in pets is becoming more common as this sweetener is used more often in human foods. It is particularly toxic to dogs due to the way xylitol is absorbed and broken down. At this point, it does not seem to be as toxic to other pets including cats and exotics.

In people, xylitol is absorbed slowly after ingestion. Unfortunately, in dogs it is absorbed rapidly and once in the bloodstream it acts as a strong promoter of insulin release. Insulin lowers blood glucose levels. When too much insulin is released, the blood glucose drops significantly, causing a dangerous hypoglycemia. Signs such as extreme lethargy or seizures can occur. Vomiting is often the rst sign seen.

Xylitol toxicity in dogs can also cause liver failure. This may take up to 48 hours to develop. Bleeding, bruising, and even death can occur in these cases.

SSF DogIngesting even a small amount of xylitol can cause signs of toxicity. In a 20-pound dog as few as one or two pieces of gum may cause hypoglycemia and 5 to 10 pieces may cause liver failure. For the granulated form of xylitol used for baking, as little as 1⁄4 teaspoon may cause hypoglycemia or just over one teaspoon may cause liver failure in that 20-pound pooch.

If there is any chance your dog ingested a product containing xylitol, you should call a veterinarian immediately. Typical treatment may include inducing vomiting, running blood work, and giving intravenous fluids containing dextrose (sugar). Various blood work parameters should be monitored for up to three days.

Since xylitol is so toxic to dogs, handling of xylitol-containing foods is very important. Those dogs that experience uncomplicated hypoglycemia have a good prognosis if intervention is initiated promptly. Unfortunately, those dogs that develop liver failure have a poor prognosis.

-Patricia Mackey, DVM

This article 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: Treatment, Sjögren’s, Xylitol

Hair Loss and Sjögren’s

Posted on Mon, Aug 20, 2018

SSF logo Q. “I am starting to experience hair loss. Can this be connected with my Sjögren’s and what can I do about it?” 

A. Hair loss can be caused by a number of conditions including hormonal or genetic causes, medications, inflammatory conditions of the scalp, autoimmune disorders, or shedding of the hair that can occur after a change in health status. Patients with Sjögren’s can have hair loss, but their underlying Sjögren’s is not always to blame. A thorough history and physical exam by a dermatologist can help to elucidate the underlying cause of the patient’s hair loss and will guide treatment.

As Sjögren’s patients often have a concurrent autoimmune disorder it is important to confirm entities like cutaneous or systemic lupus are not the cause of the hair loss. Control of the underlying autoimmune disease is the priority in this case to improve the hair loss. If cutaneous lupus is present, topical medications, injectable medications, and sometimes-internal medications are needed. Significant illness or major life events, which can affect Sjögren’s patients, can produce a shedding of the hair called telogen effluvium that fortunately is self-resolving. Androgenetic alopecia, a type of hair loss that can be caused by genetic or hormonal factors, and is not related to Sjögren’s, can begin with a widening of the midline part of the hair. Topical minoxidil (Rogaine) 5% foam or solution is usually the first line treatment.

As a number of other conditions can also produce hair loss, I would encourage you to see your dermatologist to diagnose your type of hair loss and formulate a treatment plan.

Natalie Wright, MD, FAAD
Texas

This article 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: Treatment, coping with sjogren's, Lupus, Sjögren’s, Hair Loss

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.

Support_

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.

 Click Here to Receive our Newsletter  by Becoming an SSF Member

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.”

baraf.jpg

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. 

Click Here to Receive our Newsletter  by Becoming an SSF Member

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.

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

 

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

SSF Top 5 .png

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. 

Click Here to Receive our Newsletter  by Becoming an SSF Member 

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.

headaches .png

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. 

Click Here to Receive our Newsletter  by Becoming an SSF Member

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

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