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

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

NIH Hosts Dietary Supplement Database

Posted on Tue, Feb 09, 2016

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

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

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

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

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

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

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

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

Ask the Doctor: Sjogren’s and the Benefits of Vitamin D

Posted on Tue, Jul 28, 2015

Q. I keep reading about the use of vitamin D with autoimmune diseases. How important is it for Sjögren’s patients? 

A. Vitamin D is important in bone and cartilage homeostasis. New evidence indicates that vitamin D may have extraskeletal benefits on several systems including the immune system. Autoimmune diseases such as systemic lupus (SLE), and Sjögren’s have been associated in a few studies with low vitamin D levels. However, the significance of low vitamin D levels in disease pathogenesis and prevention is unclear.

What are the sources of vitamin D? Vitamin D has two precursors, Vitamin D2 (ergocalciferol) and Vitamin D3 (cholecalciferol). Vitamin D3 is synthesized mainly in the skin by the action of ultraviolet light. Vitamins D2 and D3 are found in very few dietary sources, such as fish oils or fortified dairy products, as well as supplements.

SSF_Blog

Recommendations regarding desirable levels are based upon evidence related to bone health. Some controversy exists, but experts such as the International Osteoporosis Foundation suggest that a minimum level of 30 ng/mL is necessary to decrease the risk of falls and fracture. 

Vitamin D deficiency is very prevalent in the general population and some studies indicate a higher prevalence of vitamin D deficiency in certain autoimmune diseases. However, these studies have not been conclusive. As an example, in SLE patients, recent studies have indicated the prevalence of vitamin D deficiency to range between 38% and 96%. The wide variation can be attributed to many factors, such as the age of the patients recruited, geographic location, season at the time of the study, ethnicity, medications used and the accuracy of the vitamin D assay method used.

In Sjögren’s, few small trials have been performed to assess the prevalence of low vitamin D levels and the association with disease severity. No conclusive data has been assembled to indicate that subjects with Sjögren’s have lower vitamin D levels than healthy subjects, or to suggest a pathogenic relationship between lack of vitamin D and development of disease.

Patients with Sjögren’s can be prone to vitamin D deficiency. Photosensitivity, where exposure to ultraviolet light triggers a rash is prevented by avoiding exposure to sunlight, could contribute to lower levels of vitamin D. Furthermore, certain medications may aggravate vitamin D deficiency. Chronic corticosteroid and hydroxychloroquine use are suspected to affect vitamin D concentration and activity respectively. 

In summary, although there are no guidelines regarding optimal vitamin D levels for extraskeletal and immune system health, it would be reasonable to recommend that patients be screened for vitamin D deficiency and treated with supplementation. The American College of Rheumatology recommends a daily intake of 800–1000 IU per day of vitamin D in patients on treatment with steroids.

by Stamatina Danielides, MD

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

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Topics: sun and sjogren's, Diet, Nutrition, Sjogren's, Sun Sensitivity, Vitamin D, Lupus

What is a Sjogren's Flare?

Posted on Thu, Mar 12, 2015

What is it? How is it treated? Can you avoid it? 

Medical dictionaries define “flare” as a sudden exacerbation of a disease. A flare is different from the day-to- day variation of symptoms that patients with chronic diseases experience and is characterized as a large and rapid increase in a patient’s usual symptoms. I like to define a flare as a sudden and significant increase in the activity of a disease. This definition allows us to use quantitative measures of disease activity to compare levels of disease activity from one point in time (e.g. baseline) to another (e.g. flare). 

2015_SSF_Body_ImageSeveral measures of disease activity have been developed for Sjögren’s. The two most promising are the European League Against Rheumatism Sjögren’s Syndrome Disease Activity Index (ESSDAI) and the European League Against Rheumatism Sjögren’s Syndrome Patient Reported Index (ESSPRI). The first is a tool that measures disease activity from the physician’s perspective in the many organs and systems affected by Sjögren’s.

The second measures disease activity from the patient’s perspective and includes a patient’s global assessment of disease and individual measures of dryness, pain, and fatigue. These surveys have been developed to consistently evaluate disease activity in research settings such as clinical trials. Nevertheless, they could be used in clinical practice as guidelines for evaluating disease activity in the office or clinic. The ESSPRI is a simple tool that could be used in the clinic, much like the use of the Health Assessment Questionnaire (HAQ) in patients with rheumatoid arthritis and other rheumatic diseases.

When patients say they are experiencing a flare, they usually mean that they are experiencing a marked increase in their Sjögren’s symptoms such as dryness of their eyes and/ or mouth, joint and muscle pain, and fatigue. Other symptoms might include swollen glands, skin rashes, or numbness and weakness in extremities. Physicians must make sure that these symptoms and signs are in fact a flare of the Sjögren’s and are not caused by other conditions that are not associated with Sjögren’s. These include infection, anemia, thyroid disease, drug side effects and fibromyalgia syndrome, to mention a few. 

Since there is no specific treatment for Sjögren’s at present, treatment is symptomatic and dependent upon which organ system is involved. There are several things you can do to lessen the likelihood of getting a flare. Keep taking the medications prescribed for you on a regular, daily basis. Eat a healthy diet, exercise regularly and get restorative sleep. Try to minimize physical and emotional stress and develop good coping mechanisms when stress is unavoidable. Hydroxychloroquine has been shown to lower disease activity in systemic lupus erythematosus and may be similarly helpful in Sjögren’s. Your physician also might recommend other medications to improve your symptoms.

-Neil I. Stahl, MD, FACR

This article was first published in The Moisture Seekers, SSF's member newsletter.

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Topics: Diet, Sjogren's, Joint Pain, Fatigue, Treatment, coping with sjogren's, Flare,

Living with Chronic Pain

Posted on Thu, Oct 16, 2014

describe the imageIt is not unusual for some illnesses involving chronic pain to take years to find an accurate diagnosis. Patients may see a dozen or more doctors while seeking help, answers and relief. Some may have multiple medical appointments in the span of just one week. They may see different specialists for different symptoms, as if body parts function independently of one another. The patient may be on many medications, coping with side effects that can be brutal, and too many of these services focus on what the patient cannot do with little or no attention paid to what they can do. The very process can leave the patient feeling more helpless, more depressed, more fatigued, more stressed. How frustrating must it be to have the very things you do to get better and regain control of your life make you worse?

If you or someone you know is one of these patients, here are some tried-and-true ideas you may find helpful:

  • First, do not settle for bad medicine. Acknowledging that these cases do not fit well into today’s quick medical model, if you do not feel heard or helped, find another doctor. If that doctor does not meet your needs, find another doctor. Bear in mind that cheapest in the short run may end up being the most expensive long term if you are not getting good results. There are many good, skilled and caring doctors, but it may take some time to find the right one for you. The physician who is willing to be your partner and your educator and treat you with dignity and respect is the right choice for you.
     
  • Be your own advocate. No one knows your body better than you. No one knows your pain better than you. No one knows what makes you happy better than you. You are the expert on you.
     
  • Resist buying into the idea that our medical system is so broken good treatment is not available. I will never debate the idea that the system is broken. I will debate the idea that good treatments are not available. It may require defining and redefining what constitutes “good treatment” as you figure out what works best for you, but you will know it when you find it.
     
  • Just because a treatment may be considered “holistic” does not mean it does not have value. Just because something is approved by your insurance company does not mean it does have value. Neither comes with any guarantee and both should be met with healthy skepticism. Leaving any positive option out of the mix is a missed opportunity.
     
  • Remember to pay as much attention to your mental health as you do your physical health. The mind-body connection is real and plays a major role in combating any illness.
     
  • Consider limiting the number of medical appointments you have in one week, if at all possible. Too much focus on what ails you can bring down the best mood and invite in the boogeyman at 3am with dark thoughts that never helped anyone. Too many appointments also can eat up time that would have been available for a yoga class, a trip to the gym, or lunch with a good friend. Balance is important.
     
  • I know you’ve heard this one before: You are what you eat. A deprivation diet is not necessary or helpful or sustainable, but a healthy diet filled with a rainbow of foods that are good for all of us are even more important for those with special needs. Consider including a qualified nutritionist in your treatment team. Click here to view SSF suggested nutritional resource available for purchase, "The Immune System Recovery Plan"
     
  • Take a relationship inventory. If you have people around you who drag you down, who think they know what is best for you better than you and your doctors, or who may even question the reality of your illness, it’s time to clean house. The drain of toxic people and toxic relationships sucks away energy better used in creating your best possible life.
     
  • Whatever you love doing, do it - and then, do it again!

This article by Darlene Cross, MS, MFT, was first printed in the March 2013 issue of The Moisture Seeker, SSF's patient newsletter for SSF members.

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

Dry Eye Lifestyle Dos and Don'ts

Posted on Tue, Jul 29, 2014

describe the imageAs anyone with Sjögren’s knows, many things can exacerbate the discomfort of dryness, while there are other factors that can either soothe the dryness or advance a condition of moisture that can prevent it.

Here are things you can do on a day-to-day basis that can alleviate your symptoms and help you feel and look better.

The Dos:

  • Do Exercise
    Regular exercise unquestionably does all sorts of good things for us. The main medical benefit is perhaps the power to decrease inflammation, which it does through the release of endorphins. For that reason, exercise contributes to the health of the ocular surface. Regular exercise- at least 20 minutes of exercise that increases your heart rate 5x a week- is highly recommended for dry eye sufferers.

  • Do Take Showers
    A hot bath can be a relaxing indulgence, but the steam tends to rise away from you. It's much better to be upright in a shower, with the steam coming at you constantly. Moreover, whether you intend it or not, water from the shower head or bouncing off your body, splatters into your eyes and literally cleans them out.

  • Do Catch some Zzzzzzs
    I cannot emphasize enough how important getting as much sleep as possible is  to mitigating the discomfort of dry eye. A deep sleep, replenishes the tear film and soothes the ocular surface.

  • Do Drink Water
    You should drink 6-8 glasses of water a day. That's water- plain and simple- not sodas, sugary juices or artificially flavored drinks. Water is needed by all of the body's organs- by the skin, the kidneys, the liver, the heart and the eyes as well.

  • Do Keep up with Friends & Family
    There is increasing evidence that social interaction is as good for us as exercise, a good night's sleep or eating natural food. It is also a fact that the smile you wear while you're happy with friends can actually reduce the exposure of the ocular surface.

The Don'ts:

  • Don't get Stressed
    Stress can affect many other factors that have a direct impact on dry eye: sleep, your blink rate, and even what you eat. All of that leads to the kind of inflammation that can exacerbate a range of ailments, including a dry eye disorder. There are many different kinds of stress and there are many ways to manage it. Find the way that works for you, and learn as best you can to keep stress at a minimum.

  • Don't work your eyes too long
    Perhaps the most important thing to avoid if you suffer from dry eye is a long stretch of consecutive visual tasking. Whether it's working at a computer, watching television or reading- break up the time you spend doing it.

  • Don't Smoke, Drink Alcohol or Caffeine
    Smoke, alcohol and caffeine all dehydrate the body, including the eyes. Be aware of what these activities are doing to your dry eye, and try to reduce the frequency or eliminate all three if you can.

This information is provided by Robert Latkany, MD
Author of "The Dry Eye Remedy" and Founder & Director of the Dry Eye Clinic at the New York Eye & Ear Infirmary

Thank you to our Dry Eye Awareness Month Partner:

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Topics: Diet, Dry Eyes, Symptoms, Sjogren's, Treatment, coping with sjogren's, Chronic Pain

SSF Holidays Survival Patient Education Sheet Collection

Posted on Fri, Dec 13, 2013

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We hope you find this collection of SSF Patient Education Sheets helpful.

Especially during the busy holiday season, it’s important to make sure you listen to your body and do not neglect your health.

 And when finishing your on-line shopping this Holiday season, remember to "Shop for Sjögren's!" 

ShoppingShopping on-line is now an easy way to contribute to Sjögren's!

The Sjögren's Syndrome Foundation has partnered with on-line retailers who will donate a portion of the value of your purchase to the SSF. This year, purchase all of your holiday gifts, while also giving back to Sjögren's.

Some of our partners include:

Click here to view all our retail partners

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Topics: Dry Nose, Brain Fog, Diet, Symptoms, Sjogren's, Fatigue, Treatment, Top 5 Tips, coping with sjogren's, Chronic Pain

What are you doing this Thanksgiving?

Posted on Thu, Nov 15, 2012

Erin, diagnosed with Sjögren’s in February of 2008, challenged herself to run as a part of Team Sjögren’s Turkey Trots in 2011 and shares her experience below of running while managing her health. Here’s Erin’s story:  

I ran track in high school and college and have always enjoyed running, so I got very excited when I heard there was a Team Sjögren’s Turkey Trot fundraising event. I had always wanted to participate in these events and once I knew I could bring awareness and raise money for Sjögren’s, I wanted to do it right away. describe the image

My doctor continuously talks to me about keeping up with my physical fitness, not only for my personal wellbeing but to help fight off sickness that Sjögren’s patients are prone to and I thought joining Team Sjögren’s was a way to accomplish that. Once I decided to run, my husband, Mom, older sister, and her husband, chose to run with me.

Running for long periods of time was definitely difficult and I’m finding my recovery time to be much longer as I get older. I don’t bounce back the way I used to.  However, when I was running the race, knowing that I was running for a cause I’m directly affected by kept me motivated and pushing for the finish line. 

I would train with my husband and made sure I was eating healthy options and sleeping a sufficient amount.  I started noticing the negative effect it would have on my body if I didn’t get enough sleep or ate the wrong food.  Running is hard enough, but when you have a weakened immune system it can take so much more out of you.  You need to have a certain level of mental toughness along with support to get through those hard times.

Even though the training was hard for me, I absolutely loved being able to participate in a race that could not only bring awareness to this disease but also raise funds for a possible cure.  I also liked being able to connect with others who have Sjögren’s.  My family and I wore our Team Sjögren’s T-Shirts and as we were racing multiple people would comment about their friends, family or themselves being affected by this disease. Knowing that the Turkey Trot was bringing people together for a cause I believed in was a wonderful feeling.

The initial thought of getting out there to run or walk in a 5K seemed like a lofty goal, but one of my biggest motivations was knowing that my family and friends were by my side.  It was an incredibly uplifting experience to realize so many people believed in me and donated to my team’s fundraising efforts. I felt so proud of myself when I finished the race. I’m sure I could have run faster, but knowing I completed the race and made my family and friends proud was validation enough for me.

Thank you Erin for sharing your story and stepping up for Sjögren’s by running again this year as a part of Team Sjögren’s Turkey Trots!

describe the imageThis year, we hope you will also start your day of giving thanks by stepping up for Sjögren’s as a part of Team Sjögren’s Turkey Trots!

Click here to order your Team Sjögren's Goes TURKEY Kit!

Topics: Diet, Sjogren's, Team Sjogren's, Turkey Trots

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