Supervised walking program for Sjogren's syndrome

Objective

The aim of this study was to evaluate the safety and effectiveness of a supervised walking program in women with primary Sjögren’s syndrome (pSS).

Methods

Forty-five sedentary women fulfilling the American European Consensus Criteria for pSS were randomly placed into one of two training groups: 23 were placed in TG (Target Group)and 22 in CG (Control Group) 

The following were assessed:

• Physical fitness [maximum oxygen uptake and distance] 
• EULAR Sjögren’s Syndrome Disease Activity Index (ESSDAI) 
• Hematological tests
• Medical Outcomes Study 36 (SF-36) 
• EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI) 
• Functional Assessment of Chronic Illness Therapy Fatigue Subscale (FACIT-fatigue)
• Beck Depression Inventory (BDI) 
• Patient global assessment of response to therapy was completed at the final assessment.
• An intent-to-treat analysis was performed.

Patients in the TG joined in supervised walking three times a week for 16 weeks.

The patients of the CG were instructed not to do any kind of regular physical exercise for the 16 weeks. 

Results

After 16 weeks, the average changes were higher in the TG than in the CG.

Improved cardiorespiratory fitness was associated with improvements in fatigue scores and physical components of quality of life. Cardiorespiratory fitness refers to the ability of the circulatory and respiratory systems to supply oxygen to skeletal muscles during sustained physical activity. Improved fatigue scores were associated with reduced depression and improvements in the physical and mental components of SF-36.

Overall, 95.4% of patients in the TG rated themselves as clinically improved versus 62% of the patients in the CG. There was no flare in disease activity and no serious adverse events with exercise.

Conclusions

This supervised walking program was demonstrated to be feasible and safe with improvements in cardiorespiratory fitness, exercise tolerance, fatigue, and patient perception of improvement in pSS patients.

If you want to do this walking program yourself this is how it was done: 

Each training session was preceded by a warm-up period, where patients were instructed to walk freely and slowly for 5 minutes, followed by 20 to 50 minutes of effective walking when they were instructed to maintain their paces to achieve the target heart rate and ending by a cold-up period for 5 minutes (similar to warm-up period).

The exercise prescription was based on the heart rate at the anaerobic threshold determined at the initial assessment. The increment of intensity exercise was based on time: 30 in the first 2 weeks, adding 5 minutes per week until eighth week, completing 60 minutes, which remains until the end.

Source:

Supervised walking improves cardiorespiratory fitness, exercise tolerance, and fatigue in women with primary Sjögren's syndrome: a randomized-controlled trial.

Cold weather tips from people with Sjogren's syndrome

These tips for coping with Sjogren's syndrome in cold weather come from members of the Sjogren's blog facebook page. You can join this page by following it here on facebook.

Ten natural cough remedies

Many people with Sjogren's develop a cough because of dryness in the air passages. 

Sjogren's is a systemic disease and treatment for a dry cough caused by SS should be treated by a medication/treatment that treats the whole body.

Many people, for a variety of reasons, do not fare well on these medications and choose to try complementary treatments. Here are 10 natural cough remedies (which were reviewed by a doctor):

1. Honey tea: mix 2 teaspoons (tsp) with warm water or an herbal tea. Drink this mixture once or twice a day.

2. Ginger: Brew up a soothing ginger tea by adding 20–40 grams (g) of fresh ginger slices to a cup of hot water. Allow to steep for a few minutes before drinking. Add honey or lemon juice to improve the taste and further soothe a cough.

3. Warm Fluids: beverages that may be comforting include:

• clear broths
• herbal teas
• decaffeinated black tea
• warm water
• warm fruit juices

4. Steam: Take a hot shower or bath and allow the bathroom to fill with steam. Stay in this steam for a few minutes until symptoms subside. Drink a glass of water afterward to cool down and prevent dehydration.

5. Marshmallow root: Add hot water to either dried herb or a bagged marshmallow root tea and then drink it immediately or allow it to cool first.

Marshmallow root is available to purchase in health stores or online.

6. Bromelain has anti-inflammatory properties. Some people drink pineapple juice daily to reduce mucus in the throat and suppress coughing. However, there may not be enough bromelain in the juice to relieve symptoms.

Bromelain supplements are available and may be more effective at relieving a cough. However, it is best to speak with a doctor before trying any new supplements. People who take blood thinners or specific antibiotics should not take bromelain.

7. Thyme is a common remedy for a cough, a sore throat, and digestive issues. To treat coughs using thyme, look for a cough syrup that contains this herb. Alternatively, make thyme tea by adding 2 tsp of dried thyme to a cup of hot water. Steep for 10 minutes before straining and drinking.

8. Dietary changes for acid reflux which is a common cause of a cough. Avoiding foods that can trigger acid reflux is one of the best ways to manage this condition and reduce the cough that accompanies it.

The foods and beverages that most commonly trigger acid reflux include:

• alcohol
• caffeine
• chocolate
• citrus foods
• fried and fatty foods
• garlic and onions
• mint
• spices and spicy foods
• tomatoes and tomato-based products

9. Slippery elm

Make slippery elm tea by adding 1 tsp of the dried herb to a cup of hot water. Steep for at least 10 minutes before drinking. It is important to note that slippery elm can interfere with the absorption of medications.

Slippery elm is available in powder and capsule form in health stores and online.

10. Probiotics

Probiotics do not directly relieve a cough, but they may boost the immune system by balancing the bacteria in the gut.

A superior immune system can help to fight off infections or allergens that may be causing the cough.

Supplements containing Lactobacillus and other probiotics are available at health stores and drug stores.

Some foods are also naturally rich in probiotics, including:

• miso soup
• natural yogurt
• kimchi
• sauerkraut

However, the number and diversity of probiotic units in foods can vary greatly. It may be best to take probiotic supplements in addition to eating probiotic-rich foods.

To read the full article with the reasons why these things are recommended please visit Medical News Today. 

New Sjogren's study: Epigenetically quantified immune cells in salivary glands of Sjögren’s syndrome patients

Sofie L.M. Blokland, Fréderique M. van Vliet-Moret, Maarten R. Hillen, Aridaman Pandit, Roel Goldschmeding, Aike A. Kruize, Gerben Bouma, André van Maurik, Sven Olek, Ulrich Hoffmueller, Joel A.G. van Roon, Timothy R.D.J. Radstake, Epigenetically quantified immune cells in salivary glands of Sjögren’s syndrome patients: a novel tool that detects robust correlations of T follicular helper cells with immunopathology, Rheumatology, July 2019  https://doi.org/10.1093/rheumatology/kez268

My Understanding of this Study

In this study, researchers tested epigenetic cell counting (ECC).

ECC is a way of measuring inflammation that may help in diagnosing people with Sjogren's syndrome (SS). It could also help with monitoring symptoms of the disease.

The main benefits of epigenetic cell counting are that:

• samples can be stored for longer than other biological molecules.
• smaller samples are needed.
• a large amount of cell specific biomarkers can be identified
  
  The researchers did ECC on salivary biopsy samples of 57 people with dry mouth including those with primary Sjögren’s syndrome, secondary Sjögren’s syndrome, and some with undiagnosed SS.
  
  Using computer algorithms, researchers created patient groups based on the information collected from these salivary cells. This clearly showed the identified types and subsets, some of which were:
• people with severe disease who had high amounts of T follicular helper cells
• undiagnosed SS samples showing fewer B- and T-cells
• patients with SS who had many kindsof cells
  
  The study was small and further larger studies are needed to confirm these results and define the best markers that ECC can measure.
  
  The researchers suggested that ECC could be used, on its own or in combination with other methods, to “aid in diagnostics, prognostics and monitoring of therapy responses in clinical trials in the future.”  

Abstract of Study

Objective

To investigate whether epigenetic cell counting represents a novel method to quantify immune cells in salivary glands of patients with different forms of Sjögren’s and sicca syndrome and to capture immunopathology and potentially aid in diagnosis.

Methods

DNA from frozen salivary gland tissue sections of sicca patients was used for bisulphite conversion of demethylated DNA cytosine residues, followed by cell-specific quantitative PCR to calculate cell percentages in relation to total tissue cell numbers as quantified by housekeeping gene demethylation. The percentages of epigenetically quantified cells were correlated to RNA expression of matched salivary gland tissue and histological and clinical parameters.

Results

The percentages of epigenetically quantified CD3, CD4, CD8, T follicular helper (Tfh) cells, FoxP3⁺ regulatory T cells and B cells were significantly increased in the salivary glands of patients with SS. Unsupervised clustering using these percentages identified patient subsets with an increased lymphocytic focus score and local B cell hyperactivity and classifies patients different from conventional classification criteria. In particular, Tfh cells were shown to strongly correlate with the expression of CXCL13, lymphocytic focus scores, local B cell hyperactivity and anti-SSA positivity.

Conclusion

Epigenetic cell counting is a promising novel tool to objectively and easily quantify immune cells in the labial salivary gland of sicca patients, with a relatively small amount of tissue needed. In view of the potential of this technique to include a huge number of (cell-specific) biomarkers, this opens up new standardized ways of salivary gland analysis with high relevance for patient classification, understanding of immunopathology and monitoring of drug responses in clinical trials.

Sjögren's syndrome affects more than exocrine glands!

Sjögren's syndrome (SS) is a common immune disease that mainly
affects the exocrine glands. That's what we usually read! But we sufferers know that it affects many, many other parts of the body.

What exactly though is an exocrine gland? These are glands that secrete a substance out through a duct. They include the salivary glands, sweat glands and glands within the gastrointestinal tract, which is the stomach and intestines. The exocrine glands are the "glands of external secretion." (medicinenet)

Xerostomia is the medical term for dry mouth. But it is so much more:

• reduced saliva 
• tooth decay 
• dental erosion 
• difficulty wearing dentures
• oral thrush  
• altered taste sensation 
• altered sense of smell 
• burning or tingling sensation in the mouth
• deep grooves in tongue 
• difficulty swallowing and chewing 
• dry, sore, and cracked lips and corners of the mouth 
• mouth soreness 
• dry throat 
• dry cough 

Keratoconjuctivitis sicca is the condition of having dry eyes. Symptoms include:

• eye irritation 
• redness 
• discharge
• easily fatigued eyes
• blurred vision
• scarring of the cornea may occur without treatment
• pressure behind the eye
• excess tearing

SS can involve many other organs including:

• lung (interstitial lung disease)
• kidney (renal tubular acidosis and hypokalemia)
• nerve (peripheral neuropathy) 
• vessel (vasculitis, Raynaud's phenomenon)
• bladder (interstitial cystitis)
• lymph node (lymphadenopathy)
• liver (autoimmune hepatitis)
• pancreas (pancreatitis) 
• GI (reflux esophagitis, peptic ulcer)

EULAR Sjögren's syndrome disease activity index (ESSDAI)

The EULAR Sjögren's syndrome (SS) disease activity index (ESSDAI) is a systemic disease activity index that was designed to measure disease activity in patients with primary SS.

It is now in use as a gold standard to measure disease activity in clinical studies, and as an outcome measure in current randomised clinical trials.

The ESSDAI is a systemic disease activity index that was created in 2009. It was developed by consensus of a large group of worldwide experts from European and North American countries, supported by the EULAR. The European League Against Rheumatism (EULAR) is the organisation which represents the people with arthritis/rheumatism, health professionals and scientific societies of rheumatology of all the European nations.

The ESSDAI includes 12 domains (ie, organ systems: cutaneous, respiratory, renal, articular, muscular, peripheral nervous system (PNS), central nervous system (CNS), haematological, glandular, constitutional, lymphadenopathic, biological).

The ESSDAI includes organ-by organ definitions that were agreed on by a large number of experts.

Each domain is divided into 3–4 levels of activity. Definition of each activity level is provided by a detailed description of what should be considered in that item.

The aim was to obtain a standardised instrument for the evaluation of systemic activity in order for the ESSDAI to be used as outcome criteria to evaluate primary SS in clinical trials as well as daily practice.

This tool has been validated in a large independent cohort and has been shown to have a high contentvalidity, to be highly reproducible and to be able to detect change.

This information is OPEN ACCESS from Seror R, Bowman SJ, Brito-Zeron P, et al. EULAR Sjögren’s syndrome disease activity index (ESSDAI): a user guide. RMD Open 2015;1:e000022. doi:10.1136/rmdopen-2014000022

New evidence in treating eye dryness in Sjogren's Syndrome

Emerging evidence suggests that B cell and co-stimulatory targeted therapy may be used in the future to treat eye dryness symptoms in Sjogren's Syndrome.
Recent developments in the understanding of SS show that eye dryness is associated with:

• dysfunction of the lacrimal glands
• changes in the tear composition
• abnormalities in chemicals secreted by nerve cells

"There is good evidence for the use of topical artificial tears, antiinflammatories and Cyclosporine, and oral Pilocarpine and Cevimeline in controlling the symptoms of ocular dryness associated with SS." See Reference below.

CONCLUSIONS OF THE RESEARCH:  Conventional DMARDs are not particularly effective in treating the symptoms of dryness in the eyes in Sjogren's Syndrome (SS). These drugs are commonly prescribed for SS. Emerging evidence suggests that B cell and co-stimulatory targeted therapy may play a role in the future.

B cell activation

B cell depletion has been associated with improvement in many (but not all) conditions associated with autoantibody production.

B cell targeted therapy for rheumatoid arthritis (RA) was developed with the objective of removing B cell clones responsible for the production of pathogenic autoantibodies. [1]. This has not been achieved yet but B cell depletion therapy has been found to have a major impact on RA in the short term.

This post is my attempts to simplify medical research into Sjogren's Syndrome so that people with SS can understand: Here is the REFERENCE: Advances in the treatment of ocular dryness associated with Sjögren׳s syndrome. PubMed June 2015 Ciurtin C, Ostas A, Cojocaru VM, Walsh SB, Isenberg DA.

Find out more about DMARD's: what they are and specific ones.