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

Pain and Sjögren's

Posted on Thu, Aug 15, 2019

Pain and Sjögrens Chronic pain is one of the most common symptoms associated with Sjögren’s. I have the interesting position of working as a healthcare provider in the field of comprehensive pain medicine as well as being a Sjögren’s sufferer. My role working as a Physician Assistant and Chiropractor is to help patients manage their pain. In our practice, we treat a variety of diverse conditions with a continuum ranging from carpal tunnel syndrome to abdominal pain and everything in between. While this can be a challenging area of medicine to practice, it is also quite rewarding to assist others in living a more enhanced quality of life.

Prior to being diagnosed with Sjögren’s, I rarely experienced pain. Recently, I was reminiscing back to a time not many years ago in which I only used ibuprofen once or twice over several years’ time. My own personal struggle with Sjögren’s causes me to endure discomfort in various areas of my body every day. I experience joint pain, especially in my knees and fingers. The nerve sensations in my muscles are also very discomforting. Additionally, only since the development of Sjögren’s, I suffer from debilitating pelvic pain. Non-steroidal anti-inflammatory medications ibuprofen and Celebrex seem to help the greatest for my pain. Heat is also quite effective. When I make more anti-inflammatory diet choices, my pain is absolutely better. This includes avoiding excessive sugars, flour, dairy, red meat as well as processed and fried substances. When I regularly take vitamin D and eat fresh cherries the pain also improves. If I have poor stress management and sleeping habits, my pain worsens. Finding motivation for regular exercise can be difficult as I also fight significant fatigue, but I know that movement is necessary to keep my joints and muscles mobile. I also use a TENS unit from time to time as well as over the counter lidocaine products.

It is fulfilling to assist in improving the quality of life of others that suffer from chronic pain. This is especially meaningful being that I endure pain daily. I encourage anyone experiencing chronic pain to seek out a comprehensive pain management specialist for evaluation.

by Rebecca Hosey, DC, MSPAS, PA-C

Dr. Rebecca Hosey is a Board Certified Physician Assistant and Chiropractor. She has practiced interventional pain medicine for many years and was diagnosed with Sjögren’s in 2015.

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

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Topics: Symptoms, Sjogren's, coping with sjogren's, Chronic Pain

Did You Miss the 2019 Sjögren's Conference?

Posted on Sat, Jun 29, 2019

2019 NPC CDIf you missed the SSF 2019 National Patient Conference, you can now get all the vital information you need in an audio format!

Seven of our most popular talks from the Sjögren's National Patient Conference held in Woburn, Massachusetts, are available for purchase. Each talk is 30-40 minutes long and comes with the handouts used by the presenter so you can follow along.

 

Available Audio Talks from the 2019 National Patient Conference:

  • The Complexities of Sjögren’s: An Overview, by Theresa Lawrence Ford, MD
  • Oral Manifestations of Sjögren’s, by Vidya Sankar, DMD, MHS
  • Fatigue and Sjögren’s, by Donald E. Thomas, Jr., MD
  • Understanding Blood Changes and Lab Results, by Alan N. Baer, MD
  • Ocular Manifestations of Sjögren’s, by Esen K. Akpek, MD
  • Nutrition, Wellness and Autoimmune Disease, by Lauri Lang, RDN, LDN
  • How Sjögren’s Can Impact the Central Nervous System, by Edward A Maitz, PhD

Click here to view audio downloads  from SSF National Patient Conferences 

Click here to view audio CDs  from SSF National Patient Conferences 

(You must be logged in to purchase at the Member Price. Double check that you are receiving the correct price before finalizing your purchase.) 

These audio presentations are an excellent way to have a permanent resource with some of the most vital information available to Sjögren's patients. Purchase just the talks you want to hear or purchase the whole set! 

Click here to order one of our available 2019 talks or you can order by calling our office toll-free at 1-800-475-6473.

Topics: Nutrition, Dry Mouth, Dry Eyes, Symptoms, National Patient Conference, #ThisIsSjögrens, Sjögren’s, Central Nervous System

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.

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

 

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

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. 

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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

Ask the Expert: Sjögren’s and Fibromyalgia

Posted on Wed, May 31, 2017

Sjogren's Body 2017.png

"I have been diagnosed with Sjögren’s and fibromyalgia. How do I know what symptoms are because of my Sjögren’s and which are from the fibromyalgia? 

Should I change how I treat a symptom based on which disease caused it?"

There are many symptoms of Sjögren’s and fibromyalgia that overlap, and many people suffer from both conditions simultaneously, so this is a very good question. For example, both disorders can cause symptoms of dry eyes. If the dry eyes is due to Sjögren’s the person’s eyes will actually be dry, and artificial tears or medications to increase tearing can help. That same symptom seen in fibromyalgia is not due to the eye really being dry, but instead the nerves throughout the body being more sensitive, and feeling dryness when there is none.

Pain is another symptom that both disorders can cause. If it is from Sjögren’s the pain will typically be in the joints, whereas if it is due to fibromyalgia it can be anywhere, and will especially involve the trunk, muscles, etc.

Fatigue is a characteristic of both disorders as well, but it is difficult to differentiate the fatigue of Sjögren’s from that of fibromyalgia, except by “the company it keeps.” By this I mean that if you have overall symptoms of fibromyalgia (pain in many areas, sleep problems, sensitivity to brightness of lights, noises, odors, etc), then the fatigue you are experiencing is likely more due to the fibromyalgia, whereas if there are no other symptoms of fibromyalgia and you primarily are experiencing symptoms of Sjögren’s, then the fatigue is more likely due to the Sjögren’s. 

by Daniel Clauw, MD, Michigan

 

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

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Topics: Dry Eyes, Symptoms, Sjogren's, Joint Pain, Fatigue, Chronic Pain, Ask the Expert, Fibromyalgia

Tips for Managing Gastrointestinal (GI) Symptoms

Posted on Mon, Aug 22, 2016

The gastrointestinal (GI) tract is an internal mucosal surface, rich in immune system cells/antibodies and nerves, whose main function is to digest food and absorb nutrients for optimal health. Enjoying food and sharing meals is an important part of every society, but for many with Sjögren’s, it is a major challenge.

90% of those with Sjögren’s and Scleroderma have GI complaints. Findings include focal infiltration of predominantly T-helper lymphocytes with or without glandular atrophy and nerve dysfunction.SSSF_Nutrition.dms For persistent GI problems in those with Sjögren’s, a Neurogastroenterology or GI Motility Center may be an option.

Here are some tips for managing GI symptoms in Sjögren’s: 

  • Eat smaller amounts more frequently. Chew as well as possible.
  • Swallowing problems may be related to esophagus muscle inflammation (myositis), dryness, or nerve dysfunction. Soft foods, olive oil, and coconut water might help.
  • GERD is more common and due to decreased Lower Esophageal Sphincter tone (60% vs 20% normal). Avoid reclining after a meal; various anti-acids are available. See tips for reflux in the SSF Patient Education Sheet, “Reflux and Your Throat,” found on the SSF website at www.sjogrens.org.
  • Gastroparesis (delayed gastric emptying) occurs in Sjögren’s (30-70%), and, similar to Diabetes, causes upper abdominal pain/fullness/nausea. Gastric parietal cells can be destroyed leading to B12 deficiency. H pylori bacterial infection, if present, can be treated.
  • Small intestine immune attack (Celiac) or bacterial overgrowth can result in abdominal pain, cramping, bloating. Try a wheat/gluten free diet, or other food group elimination diets. Most nutrients are absorbed here. MALT (mucosal associated lymphoma) can occur.
  • The large intestine is where liquid is reabsorbed. Constipation and diarrhea can occur with Sjögren’s. Increase vegetables. Try magnesium supplement for constipation.
  • The pancreas, which releases digestive enzymes, can have low-level inflammation (20-40%) in Sjögren’s. Pancreatic enzyme trial is an option.
  • Liver – Autoimmune cholangitis (PBC, hallmark mitochondrial Ab) or Hepatitis (smooth muscle Ab) can occur in Sjögren’s. Hepatitis C virus should always be excluded.
The SSF thanks Nancy Carteron, MD, FACR, Clinical Faculty University California San Francisco, with special thanks to Mimi Lin, MD, Center for Neurogastroenterology & Motility, California Pacific Medical Center, San Francisco, California, for authoring these tips from the SSF Patient Education Sheet, GI Tips.

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Topics: Diet, Nutrition, Symptoms, Sjogren's, Treatment, Top 5 Tips, Gastroesophageal Reflux, Gastrointestinal (GI) tract, Scleroderma

This is Sjögren’s!

Posted on Fri, Apr 01, 2016

AprilisSjogrensAwarenessMonthToday begins Sjögren’s Awareness Month and for the next 30 days we will use your words to help raise awareness of this debilitating and complex disease.

You are the voice of the Sjögren’s Syndrome Foundation, which is why last month we asked you to share with us one phrase that represents what it is like to live with Sjögren’s. Everyday in April we will post a different one of your phrases on social media that reflects living with this invisible disease.

Each phrase will give a small glimpse into the life of Sjögren’s patients and by the end of April, we hope these 30 phrases will help others better visualize and understand the disease. 

We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Remember that by talking with one person at a time, one community at a time, one physician at a time and one company at a time – together we will reach our goal and conquer Sjögren’s!  

This is Sjögren’s!

#Day1: I look healthy on the outside, however my disease is attacking my internal organs and destroying me from the inside out. #ThisIsSjögrens #SjögrensAwarenessMonth #TheSjögrensJourney

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Click here to view our daily  April Awareness campaign on Facebook!

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: Symptoms, Sjogren's, Advocacy, April Awareness Month

The Sun & Sjögren’s: How to protect yourself

Posted on Tue, Jun 30, 2015

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

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

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

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

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

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