New - Sjogren's Syndrome  Patient Advice from the German Ministry of Health

Schloss Neuschwanstein,  Schwangau im Allgäu.

 

 

This feature has recently been published by the German Ministry of Health and contains some verygood advice for both patients and clinicians.

 

 

1. What are the causes of Sjögren syndrome?

 

What are the causes of Sjörgen syndrome?

As with any autoimmune disease, Sjögren's Syndrome is also "mistaken" for the immune system. In the process, immune cells (white blood cells, lymphocytes) increasingly enter the glandular tissue and form antibodies (autoantibodies) which damage the tissue. Due to this immunological malfunction exocrine glands are destroyed - ie the glands, whose function is on the skin surface secretions such as saliva (salivary glands), tear fluid (tear glands), sweat (sweat glands), mucus into the respiratory and digestive tract and digestive enzymes (pancreas ). A sicca symptomatology - especially in the eyes and mouth, but also on the skin, respiratory tract and the genital area - is often the result.

 

However, the main cause of the malfunction of the immune system is still unclear. Scientists only know that, as with all other autoimmune diseases, Sjögren Syndrome is polygenic-that is, multiple genes are responsible for the disease. Furthermore, a specific hereditary surface property of the white blood cells increasingly occurs (HLA system).

 

 

2. What symptoms and signs speak for Sjögren syndrome?

 

What symptoms speak for a Sjörgen syndrome?

Typical signs of Sjögren syndrome are the inflammation of the lacrimal and salivary glands as well as the gastrointestinal tract. With up to 98%, the symptoms of sicca are among the most common manifestations of Sjogren's syndrome: eye dryness (keratoconjunctivitis sicca) describes patients as burning or rubbing - it would feel as if a foreign object is in the eye. In addition, in the dry eye, increased photosensitivity occurs. The dry mouth (xerostomia), which is caused by a salivary gland dizziness (stomatitis sicca), the patients get speech problems, as the tongue often sticks to the palate, as well as difficulties in chewing and salivating dry food.

 

 

According to studies, about 5 - 35% of the population suffer from dry eyes and about 20% from dry mouth (source: www.sjoegren-syndrom.de/krankheitsbild.html). Not only these aspects of Sjögren syndrome worsen the overall quality of life, also the high prevalence of caries (tooth decay) and the associated early tooth loss drastically reduce the well-being.

 

 

 

Diseases often associated with Sjögren syndrome:

 

*  Sicca symptoms (eyes, mouth, gastrointestinal tract, genitals)

  • Dry Skin & Rare Skin Diseases (e.g., Raynaud's phenomenon, purplish  skin lesions, anular erythema, urticarial vasculitis / hives, etc.)

 

*  Rheumatism, arthritis, muscle and joint pain

 

*  Numbness & tingling of the limbs

 

  • Early Tooth Loss and Increased Cavity Risks

 

  • Abdominal pain, bloating, diarrhea and vomiting

 

  • Weight loss or weight gain

 

*  Burning while urinating & kidney pain

 

*  Increased tendency to allergies

 

  •   Anorexia

 

*   Too high or too low blood pressure

 

  •   Diseases of the central and peripheral nervous system

 

  •     Cognitive disorders, general performance decline & headaches /  

      migraines

 

  •     Chronic Fatigue and Mood Swings

 

*     Shortness of breath, dry cough

 

  •   Increased mortality during pregnancy (20%), prematurity, fetal heart 

      rhythm disorders

 

 

Schloss Moritzburg,  near Dresden,  Saxony

 

3. How to diagnose Sjögren syndrome

 

How to diagnose Sjörgen syndrome

In addition to the "general symptoms", such as increased fatigue, rheumatic pains and a pronounced dry mouth and eye with secondary manifestations (inflammation of the cornea, chronic gastritis) should be thought about a Sjögren syndrome.

 

For the correct diagnosis of the Sjögren syndrome both an observation of the Sicca symptoms and a blood test for specific antibodies belong. Proof of whether Sjögren syndrome is actually present is provided through a lip-bladder sample (biopsy) in the laboratory.

 

The specific dryness symptoms are performed on the one hand on the Schirmer- and the other on the Saxon test. In the Schirmer test, a filter paper strip is placed in the eyelid for five minutes and then the amount of tear fluid is measured. If less than five millimeters of the strip are wet, the lacrimal gland will not produce enough fluid. To measure the amount of saliva, the Saxon text is used: here the patient chews a cotton ball for two minutes. Subsequently, the weight is determined to validate whether the salivary gland can produce enough saliva secretions.

 

Also, the formation of saliva can be assessed by means of a so-called scintigraphy: In this method, the patient is a radiolabeled substance (99mTC pertechnetate) injected into a vein. After a certain period of time, a picture is taken showing how much of this substance has been eliminated by the salivary glands. However, this type of diagnosis is rather unspecific and is therefore rarely used.

 

In the blood examination, the doctor usually detects an increased blood sedimentation rate, which is based on an increased immunoglobulin concentration. This is typical of inflammatory processes in the body.

 

In addition, the so-called antinuclear antibodies (ANA) - in particular the two subgroups SS-A / Ro antibodies and SS-B / La antibodies are determined. This is of great importance because the immune response of the Sjögren syndrome destroys the body's own structures, with the Ro and La antibodies specifically damaging the local cell nuclei.

 

If the evaluation of the sicca symptoms as well as the blood test is positive, a tissue sample is taken from the lip mucosa as a proof. Significant signs of Sjögren syndrome are both inflamed and lymphoid-permeated glandular tissue.

 

Since the 1970s, there are several criteria to be able to evaluate the Sjögren syndrome. For this purpose, different classification proposals were prepared (most recently in 2012 by the large professional society ACR = American College of Rheumatology), of which, among others, European doctors make use (Source: Stefanski et al, 2017, www.sjoegren-syndrom.de/krankheitsbild.html) , The following aspects include the current classification pattern:

 

 

*  Eye problems

*  Complaints in the mouth area

*  Eye findings

  • Tissue findings

*  Salivary gland involvement

 

 

4. What is the typical disease course of Sjögren syndrome?

 

What is the typical disease course of Sjörgen syndrome?

In general, the Sjögren syndrome is relatively mild, the oral and ocular dryness usually chronic advancing. However, other autoimmune diseases are developing quite frequently (e.g., thyroid disorders), but this does not necessarily make the overall prognosis worse. Unless there are additional complications, such as lymphoma (enlargement of the lymph nodes), Sjögren's syndrome may "worsen".

 

Also, the internal organs such as lungs, kidneys and blood vessels are relatively rarely affected. In severe disease progression of Sjögren's syndrome, the nerves (e.g., in the form of polyneuropathy) and the brain are partially affected. The prognosis of a secondary Sjögren syndrome depends mainly on the underlying disease.

 

Schloss Drachenburg, Siebengiberge, near Bonn

 

 

 

5. What treatment methods or therapies are there for the Sjögren syndrome?

 

What treatments are available for Sjörgen syndrome?

 

5.1 conventional medicine

Despite the fact that more and more studies on the Sjögren syndrome are developed and more knowledge about the specific mechanisms is gained, so far no targeted therapy is possible. Since the disease varies from person to person, an individual treatment approach is recommended. Specifically, if a patient suffers from a secondary Sjögren syndrome, the treatment indication will depend on the underlying disease (e.g., sicca symptomatology). For this reason, physicians recommend treating the autoimmune disease with an interdisciplinary team of general practitioners, ophthalmologists, ENT and dentists as well as internal rheumatologists (source: Stefanski et al, 2017).

 

A general approach to therapy consists mainly of eye drops (e.g., tear replacer with Cycloporin-A), ointments and good, continuous oral care. There are also certain medications that can alleviate the symptoms: rheumatoid drugs such as antimalarials (Quensyl®), cortisone, immunosuppressants (including azathioprine) and pilocarpine (Salagen®) to combat dryness.

 

5.2 Naturalthepathy

In order to achieve an improvement in the quality of life, Sjögren's syndrome will lead to daily behavioral guidelines that are helpful in preventing (LINK -> "How to prevent Sjögren's syndrome?") And in influencing specific environmental factors.

 

A homeopathic approach or recovery based on naturopathy unfortunately hardly or not sufficiently help.

 

5.3 Alternative forms of therapy

Since Sjögren syndrome is a multifactorial disease - that is, that several factors are responsible for this disease (eg sicca symptoms, rheumatism, arthritis, etc.), in this context a general approach to therapy (LINK -> see "classic") is used Conventional medicine "!).

 

6. Are there any home remedies for the Sjögren syndrome?

 

Since Sjögren syndrome is a multifactorial disease - that is, that several factors are responsible for this disease (eg sicca symptoms, rheumatism, arthritis, etc.), in this context a general approach to therapy  is using Conventional Medicine 

 

Since the Sjögrens Syndrome is treated not only individually, but above all with the help of an everyday code of conduct, many "home remedies" can provide relief

 

The most common preparation for inflammation is aspirin and the so-called non-steroidal anti-inflammatory drugs (NASR) Voltaren Ibupruf, diclofenac, naproxen and disalcid for upset stomach. Also, scientific studies have shown that the NSAIDs can reduce dental diseases such as gingivitis. (Source: www.sjoegren-syndrom.at/therapien.php)

 

Unfortunately, steroid-containing drugs often lead to side effects such as high blood pressure, osteoporosis or diabetes mellitus.

 

In addition, anti-rheumatic drugs originally developed for the treatment of rheumatoid arthritis can be used.

 

There are some home remedies that can be used specifically for dry mouth and eyes:

 

* Liquid replacement for mouth & eyes (for example creams, ointments & oils)

 

* Stimulation of the glands by means of sugarless lollipops

 

* Avoidance of drafts, cigarette smoke, dry rooms, dust, chemicals

 

* Use of an electric humidifier, installation of moist trays

 

* Position plants in the home & often go for a walk

 

* Use of goggles (for example when swimming, windy weather)

 

* Avoid working at the computer for a long time, take breaks, place the monitor at eye level

 

* Avoid sugar & stress!

 

* Reduce alcohol and coffee, as they also remove water from the body

 

  • Refrain from black spices

 

  • Perform nasal rinses (one teaspoon of salt + half liter of distilled water)

 

  • Perform mouth rinses (with olive oil, water + lemon / lime juice or water + a  

    teaspoon of vinegar)

 

* Abstain from toothpaste with the ingredient sodium lauryl sulphate (SLS)

 

*  Use natural supplements like Q10.

 

 

8. How to prevent Sjögren;s Syndrome

 

As with all diseases, the Sjögren’s syndrome is a conscious and healthy lifestyle as the basis for a general well-being, more energy and less stress. Relaxation techniques like yoga, pilates or meditation help you - take your time!

 

Another important aspect is fatigue prevention and regulated sleep. A healthy and balanced diet, sufficient physical activity and continuous dental care also help to specifically improve the overall quality of life.

 

 

In addition, it is worth considering contacting a relief organization where you can interact with many other stakeholders. 

 

It is also possible to engage politically by contacting the German Ministry of Health and Social Security (LINK -> "http://www.bmg.bund.de/) making them aware of your voice, it promotes greater awareness of rare diseases and should be explored.

 

 

 

 

References:

 

 

Herman & Horwath Winter. Diagnosis and treatment of Sjögren syndrome. Journal of Mineral Metabolism & Musculoskeletal Diseases, 2011; 18 (2)

Anna-Luisa Stefanski, Christian Tomaik, Uwe Pleyer, Thomas Dietrich, Gerd Rüdiger Burmester, Thomas Dörner. Diagnosis and therapy of Sjögren syndrome. Deutsches Ärzteblatt, 2017