Sjögren’s Syndrome

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Forms of Sjögren

Sjögren’s syndrome has a primary form and a secondary form.
• Having only Sjögren’s syndrome, then you have the primary form of the condition. But people with the primary form may also have temporary narrowing of blood vessels (capillaries) in the fingers or toes (as in Raynaud’s phenomenon). A capillary is an extremely small blood vessel located within the tissues of the body that transports blood from arteries to veins.
• Having the primary form of Sjögren’s syndrome together with another disease, most often rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE), then you have the secondary form of Sjögren.

Primary form
In the primary form, especially the tear and salivary glands are affected. Patients with the primary form may also have temporary narrowing of blood vessels (capillaries) in the fingers or toes (as in Raynaud’s phenomenon). About 30 to 40% of people with Sjögren’s syndrome also suffer from other physical complaints, such as:
• joint inflammation and joint pain (arthritis).
• muscle strain.
• severe fatigue.
• inflammation in the blood vessels (vasculitis).
• abnormalities of the eyes (corneal scars and inflammations), mucosal inflammation, uveitis (sinusitis), scleritis.
• lung and kidney diseases (hepatitis and nephritis).
• thyroid abnormality (thyroiditis).
• autoimmune liver or pancreatic inflammation.
• abnormalities in blood levels, blood-forming organs and lymph nodes.
• neurological abnormalities.
There may be a very small increased risk of developing a specific form of non-Hodgkin’s lymphoma (a malignant lesion of the saliva and lymph nodes) with the primary form of Sjögren.

Secondary form
In the secondary form you have, in addition to the above complaints of Sjögren’s syndrome, another (rheumatic) disease, for example:
• rheumatoid arthritis (RA).
• systemic lupus erythematosus (SLE).
• MCTD.
• scleroderma, dermatomyositis, polymyositis or primary billiard cirrhosis.

Complaints

Sjögren’s syndrome has the following main symptoms of dry eyes and a dry mouth. Most of the complications of Sjögren’s syndrome occur because of decreased tears and decreased saliva. A large amount of patients with Sjögren’s syndrome remain healthy without any serious complications. With other patients sometimes complications can occur related to inflammation in other body systems.
• Approximately 10-15% of people with Sjögren’s syndrome have severe eye disorders with impaired vision. Patients with dry eyes are at increased risk for infections around the eye and may have damage to the cornea. Dry mouth may cause gingivitis (gum inflammation), an increase in dental decay and oral yeast infections that may cause pain and burning. Some people may have episodes of painful swelling in the saliva glands (parotid gland at the edge of the jaw) around the jaw.
• There may be complications in other parts of the body, such as pain and stiffness in the joints with mild swelling, skin rashes on the arms and legs related to inflammation in small blood vessels (vasculitis) and rarely neurologic problems causing numbness, tingling and weakness. Other complications may be rare inflammation in the lungs (mimicking pneumonia), liver and kidney, which can be difficult to diagnose. In a small number of people, Sjögren’s syndrome may be associated with lymphoma, a cancer of the lymph glands.

Complaints can be:
• dry eyes. The inflamed tear glands produce less tear fluid, which makes the eyes dry. This causes itching, irritation, pain, burning eyes and the feeling that there is a grain of sand in your eye. Because your eyes are dry, the eye surface becomes rough. After a while, the cornea, the outer membrane on the front of the eye, is damaged. This makes your eyes getting irritated faster by dry air, air conditioning, dust particles, cigarette smoke and bright light. Contact lenses are not well tolerated anymore, vision is blurred and ulcers may develop on the cornea or a thick swelling of the upper eyelid on the side of your sleep.
• dry mouth and dry, irritated throat. The inflamed salivary glands produce less saliva. This gives you a dry mouth and additional complaints, such as dry, cracked lips, trouble with chewing, swallowing and speaking, torn mouth corners, reduced taste and smell, tickling cough and bad breath. Saliva fights bacteria and protects your teeth against cavities. With Sjögren’s syndrome you do not have enough saliva and your saliva is often of lesser quality. This often causes dental decay and fungal infections in the mouth. Often the dentist discovers the first symptoms of Sjögren’s syndrome. The salivary glands can be enlarged by the inflammation and you can feel them as lumps along your jaw line.
• fatigue. The cause of the extreme fatigue you feel is not entirely clear. Possibly this is due to the inflammation itself, the reaction of the body to it and possibly anemia. A long-term severe fatigue can be a first sign of Sjögren’s syndrome. Anemia can also strengthen fatigue.

Other complaints may include:
• dry skin. Your skin can become dry and flaky due to the reduced function of the inflamed skin glands and start itching.
• muscle pain and joint pain. Muscle pain and painful, inflamed, warm joints (arthritis).
• a temporary narrowing of blood vessels (capillaries) in the fingers or toes (as in Raynaud’s phenomenon). The blood vessels in your fingers or toes are temporarily constricted by the transition from a warm to a cold environment. The fingers or toes first turn white, then blue and then red. If the blood flow continues to be disturbed for a long time, you may have permanent pain and sometimes wounds on the fingertips.
• inflamed blood vessels. Your blood vessels may become inflamed, especially in the lower legs. You can see this by many red small dots (the size of a pin prick) on your lower legs.
• nerve pain. A numb feeling (especially on the soles of the feet) or a tingling, burning or painful sensation or an inflammation of nerves in the legs and face.
• shortness of breath. You can have the feeling of acute tightness of air. This can be a very threatening feeling. Acute tightness occurs within a few hours and also requires quick treatment. With slowly increasing or chronic anxiety, the symptoms of tightness of air develop over a longer period of time.
• suffer from heartburn, difficulty in swallowing solid food or a cramping feeling behind the sternum that pulls away again. Heartburn (gastric acid) is a liquid that helps the stomach to digest food that passes through the esophagus. The stomach itself is protected by a layer of mucus so that the gastric acid can not cause any damage there. A seal between the esophagus and the stomach should ensure that no gastric acid flows back from the stomach to the esophagus. The esophagus does not have a protective mucus layer. If stomach contents from the stomach nevertheless flow back to the esophagus, it causes heartburn.
• bladder infections. A bladder infection (cystitis) is also called a low urinary tract infection. It is caused by an infection that leads to inflammation of the bladder wall. In most cases there is an acute bladder infection. The bacteria in the bladder cause the inflammation. In case of chronic cystitis, no bacteria are present, but the bladder is constantly inflamed due to damage to the mucous membrane. In that case there can be interstitial cystitis, a rare condition of the bladder wall that is more common in people with Sjögren’s syndrome, which must be treated.
• dry vagina. With vaginal dryness, the normal lining of the vagina is reduced in thickness. The normal wetting of the vagina is reduced, creating a ‘dry‘ environment. Vaginal dryness is also called vaginal atrophy. Atrophy is a decrease in tissue. Vaginal dryness is a very common phenomenon after the menopause.
• scleroderma. In case of systemic sclerosis (SSc), in addition to damage to the skin due to the hardening of the connective tissue, heartburn can also occur as a result of damage of the esophagus. As with Sjögren’s syndrome, swallowing problems can occur in scleroderma. The kidneys, the heart and the lungs can also be damaged by scarring, which causes these organs to work worse. In rare cases, inflammation of organs such as kidneys, lungs and liver can occur.
• kidneys: symptoms include high blood pressure, fluid retention (swollen legs, weight gain) or muscle weakness.
• lungs: suffering from a tiring, dry tickling cough, especially in the morning, sometimes shortness of breath and possibly inflamed lungs.
• liver: the skin or whites of the eyes can turn yellow, patients have pain in the upper abdomen and feel extremely tired.
• a slightly increased risk of non-Hodgkin’s lymphoma. This is a malignant lesion of the saliva and lymph nodes, which occurs especially at an older age.

Diagnosis

Your doctor will base your diagnosis on a combination of the medical history, his findings and additional test results.

Anamneses
At the first visit, the doctor asks you a number of questions to get a good picture of your condition. You can think of the following questions:
– When did your complaints start?
– Can you describe your complaints?
– How are your working conditions?
– What medication do you use?
– Do rheumatic diseases occur in your family?
– What is your medical history?
– Are you under the treatment of other specialists and for what?

Diagnosis depends on a combination of symptoms, physical examination and special tests and blood tests. There is no specific single test with which Sjögren’s syndrome can be diagnosed. Dry eyes and mouth may be early signs of the condition but require further investigation, because these symptoms can be caused by many other conditions or drugs. Special tests may assess any decrease in tear or saliva production. Blood tests can determine the presence of antibodies (immune system proteins that help destroy foreign invaders) typical of the disease, such as anti-nuclear antibodies (ANA), anti-SSA and SSB antibodies or the rheumatoid factor, but these are not always present. Biopsies of saliva glands around the face or under the surface of the inner lip also may be used to make a diagnosis.

Physical examination
1. Salivary glands
• Lip biopsy.
A salivary gland biopsy (lip biopsy) can be done. A few small salivary glands are removed on the inside of your lower lip. The short-term surgery is done under local anesthesia. The removed salivary glands are then examined under the microscope.
• Thickened salivary glands.
During a physical examination the doctor can determine whether your (larger) salivary glands are thickened.
• X-ray.
The doctor injects contrast liquid into the outlet of the salivary glands in your oral cavity. The fluid makes the saliva channels visible on an X-ray. The doctor can see if these channels are blocked or turned off.
2. Eye examination
• Schirmer test.
The ophthalmologist examines how much tear fluid you produce with the Schirmer test. Tears protect your eyes from drying out. If you blink with your eyelids, the tears are evenly distributed over the eye surface to a thin layer, the tear film. If you have dry eyes, the tear film will not function properly. The cause is sometimes insufficient production of tear fluid through the lacrimal gland. But it is also possible that the amount of tear fluid is sufficient, but that the composition of the tear fluid is of insufficient quality. It is also possible that the tears do not sufficiently reach the eye surface due to blockages or irregularities. With the Schirmer test, special paper strips are placed between the eye and the lower eyelid in the eye corners of both eyes. The strips can give a somewhat burning and/or abrasive feeling. This allows the amount of tear fluid to be measured to determine whether the production is sufficient. If after the test it appears that there is less than 5 mm tear fluid on the paper strip, then you have too little tear production. If it appears that there is 10 to 15 mm of moisture on the paper strip, this means that you have a normal tear production. Sometimes the strips get well wet, but the tears are of poor quality. The BUT test can then determine the quality of the tear fluid.
• Break-up-time (BUT) test.
The ophthalmologist measures the quality of the tear film with the so-called BUT test. You may not blink with your eyelids. The doctor will measure the number of seconds it takes for the tear film to break on your eye surface. Normally this takes longer than ten seconds, but in people with Sjögren’s syndrome the tear film often breaks faster.
• Bengali red test or Lissamine green test.
If you have dry eyes, the ophthalmologist checks with the dye lissamine-green or Bengali-red if the cornea of your eye is damaged. By dripping the special dye into your eye, the doctor can determine whether the superficial cells of the eye surface have changed. The dye will attach itself more strongly to your eye if you suffer from dry eyes and damage to the cornea has occurred.
• Fluorescein test.
An additional test can be done by the ophthalmologist to see what your cornea looks like. Fluorescein is a yellow-green liquid, which makes all damage on the cornea visible under a special lamp and shows all mechanical damage to the cornea of your eye. Fluorescein is automatically washed away by tears within minutes of the eye examination.

Blood tests
• Antibodies
With the help of blood tests it is checked whether certain antibodies (ANA, anti-SSA and anti-SSB and the rheumatic factor), which are very specific to Sjögren’s syndrome, are present in your blood. Antibodies are proteins that are important in our body in the defense against pathogens and certain toxins. The immune system makes an abundance of proteins called antibodies. Antibodies are made by white blood cells in the immune system, called the B cells. These B cells are overactive in Sjögren’s syndrome. The antibodies recognize and combat infectious organisms in the body. When an antibody recognizes the foreign proteins of an infectious organism, it recruits other proteins and cells to fight off the infection. This cascade of attack is called inflammation. Sometimes these antibodies make a mistake, identifying normal, naturally-occurring proteins in our bodies as being “foreign” and dangerous. When these antibodies make incorrect calls, identifying a naturally-occurring protein as foreign, they are called autoantibodies. Autoantibodies start the cascade of inflammation, causing the body to attack itself. The antibodies that target “normal” proteins within the nucleus of a cell are called antinuclear antibodies (ANA). The ANA test is one of the primary tests for helping to diagnose a suspected autoimmune disorder or rule out other conditions with similar signs and symptoms. ANA react with components of the body’s own healthy cells and cause signs and symptoms such as tissue and organ inflammation, joint and muscle pain, and fatigue. The ANA test detects these autoantibodies in the blood. ANA specifically target substances found in the nucleus of a cell, hence the name “antinuclear”. They probably do not damage living cells because they cannot access their nuclei. However, ANA can cause damage to tissue by reacting with nuclear substances when they are released from injured or dying cells. Most of us have autoantibodies, but typically in small amounts. The presence of large amount of autoantibodies or ANAs can indicate an autoimmune disease. ANAs could signal the body to begin attacking itself which can lead to autoimmune diseases, including Sjögren’s syndrome.
• Sedimentation speed
Blood tests through blood sedimentation measure the presence and extent of inflammation through the sedimentation rate of the red blood cells (erythrocytes). An erythrocyte sedimentation rate (ESR) test is sometimes called a sedimentation rate test or sed rate test. This test measures the speed at which the red blood cells settle due to gravity in an upright, narrow tube of blood. The upper part of the blood in the tube is the plasma, which becomes visible as a column of clear, yellowish liquid after sedimentation of the red blood cells. The length of this column of plasma is measured after one hour and expressed in millimeters per hour (mm/hour). This blood test doesn’t diagnose one specific condition. Instead, it helps your doctor determine whether you’re experiencing inflammation. This can be the result of infections (bacteria, viruses), tumors and autoimmune diseases (arthritis). In Sjögren’s syndrome there is often an increased sedimentation. This is caused by an increased IgG level (immunoglobulins, proteins produced by the immune cells to combat infections).
• Anemia
There is often a low hemoglobin level (Hb) in the blood due to the chronic inflammations. The hemoglobin level (Hb) of the blood indicates whether there is sufficient production and filling of red blood cells. Hemoglobin is responsible for the oxygen transport in the blood and a too low hemoglobin level leads to (severe) fatigue.
• Underlying conditions
In the secondary form you have, in addition to the possible symptoms mentioned in Sjögren’s syndrome, another illness. The blood tests help to rule out or detect these other disorders.

Diagnosis
This is made on the basis of at least 4 of the following characteristics:
• eye complaints for more than 3 months and every day from:
– dry burning eyes, pain, redness.
– the feeling that there is sand in the eyes.
– use of artificial tears (eye drops) more than 3 times a day.
• other complaints for more than 3 months and every day from:
– a dry mouth.
– salivary glands.
– having to drink extra when eating to get dry food out.
• abnormalities in tear fluid or the cornea of the eye, which are evident from the Schirmer test, BUT test, Bengali red test or Lissamine green test and Fluorescein test.
• abnormalities in salivary gland tissue associated with Sjögren’s syndrome.
• abnormalities in the salivary gland production.
• demonstrated presence of usually one or more antibodies, such as ANA, anti-SSA, anti-SSB and the rheumatic factor.
• an underlying (rheumatic) disease (this means the secondary form).

Treatment

Sjögren’s syndrome is a chronic condition. The largest part of the treatment for Sjögren’s syndrome is aimed at relieving symptoms of dry eyes and mouth and preventing and treating long-term complications such as infection and dental disease. The symptoms of dryness are often not completely eliminated by treatment. There is no specific treatment to completely eliminate the disease.

Drug treatment
Drugs without a prescription
• For the pain you can get a simple painkiller with the active ingredient paracetamol without a prescription. Paracetamol helps against pain and fever, does not cause stomach problems, usually does not cause side effects and can be easily combined with other medications.
• An NSAID, an anti-inflammatory analgesic in a lower dose. The abbreviation NSAID stands for Non-Steroidal Anti-Inflammatory Drugs, such as diclofenac, naproxen and ibuprofen. These painkillers inhibit inflammation.

Do you have physical complaints? Always go to your doctor or specialist for a proper diagnosis and proper treatment.

Drugs on prescription
This is provided by your doctor or rheumatologist or internist.

Treatment is designed to lessen the most bothersome symptoms. Medications that reduce gastric acid (such as proton-pump inhibitors and H2 blockers) may lessen symptoms of acid reflux. Treatments may help relieve some of the dryness, but usually some dryness persists. There are, however, ways to reduce the complaints as much as possible:
• Dry eyes
Dry eyes are treated with artificial tears, neutral eye drops, which you can apply regularly during the day or with gels applied at night. Other measures, such as plugging or blocking tear ducts, can be used in more severe cases. The eyes must be kept moist and protective caps can be used for protection. A greasy eye ointment can be used against dehydration or inflammation of the cornea.
Artificial tears. Artificial tears, such as methylcellulose, contain a humectant that makes the tears in the eye thicker. This prevents dehydration and irritation of the cornea. There are artificial tears with or without preservative.
Hood glasses. The hood glasses are glasses around which translucent caps are placed, which prevent your tears from evaporating by the wind and/or sunlight. It may be possible to reduce dripping with artificial tears by using a pair of goggles.
Fatty eye ointment. The oily eye ointment applies a thin layer of fat to the cornea and thus prevents dehydration and inflammation of the cornea.
Eye drops that reduce inflammation in the glands around the eyes, such as cyclosporine (Restasis), may be used to increase tear production.
• Dry mouth, dental decay and infections
Regularly drinking sips of water, using sugar-free chewing gum and sugar-free candies or using saliva substitutes may relieve dry mouth. Good dental hygiene is very important. 
Artificial saliva. Due to the thickener in the artificial saliva (saliva replacement) the gel will stick to the mucous membranes in mouth and throat longer. This keeps the dry mouth moist.
Pilocarpine (Salagen) or cevimuline (Evoxac). These are prescription drugs that stimulate the saliva flow. Pilocarpine improves the effect of salivary glands. The delivery of saliva in the mouth is therefore greater.
Cavities, dental decay and tooth loss. By brushing and flossing the teeth every day, dental decay and bad teeth due to a dry mouth can be prevented. A regular visit to the dentist for control is important.
Sodium fluoride. You are more likely to have dental decay with a dry mouth. Sodium fluoride can prevent this dental decay with a special dental gel.
Anti-fungal therapies are used if patients develop yeast infections.
• Nasal dryness
Humidifiers and nasal saline irrigation may improve nasal dryness.
• Dry skin
Dry skin can be treated with moisturizing lotions.
• Dry vagina
To relieve a dry vagina, you can use a lubricant, available at the pharmacy.
• Inflammations and other problems in the body
Joint inflammation, muscle inflammation and inflammation in nerves can be treated with painkillers and anti-inflammatory drugs. Severe kidney and lung diseases can be treated with prednisone (corticosteroid) and immunosuppressants such as hydroxychloroquine or azathioprine (DMARDs). In addition, researchers are evaluating the biologic inhibitor rituximab (Rituxan) and other biological therapies to treat cases of Sjögren’s syndrome that affect the entire body.
• An NSAID, an anti-inflammatory analgesic, such as naproxen, ibuprofen, meloxicam or indomethacin. These are drugs that are effective against inflammation, swelling, pain, stiffness and fever, but do not prevent joint damage. They do not contain corticosteroids (steroids). There is no proof that any one NSAID is better than others. Your doctor will prescribe these prescription drugs with a higher dose of the active substance. The exact effective dose varies from patient to patient. High doses of short‐acting NSAIDs give the fastest relief of symptoms. Given in the correct dose and duration, these drugs give great relief for most patients. The NSAIDs may cause stomach upset, gastrointestinal (GI) bleeding, ulcers or diarrhea, but they are well tolerated by most people when used for the short term. Some people cannot take NSAIDs because of health conditions such as ulcer disease, impaired kidney function or the use of blood thinners.
• A corticosteroid (an artificial adrenal cortex hormone) is an anti-inflammatory drug that resembles the natural hormone that the body produces in the adrenal cortex. Corticosteroids mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body’s usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions, such as arthritis. Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues. A corticosteroid drug can be quickly effective for a joint swelling that is localized (not widespread) by an injection or shot into the effected joint or tendon sheath (the membrane around a tendon). Very inflamed joints may benefit from corticosteroid injections (cortisone shots). Examples are prednisone or prednisolone.
• A conventional synthetic DMARD (Disease-Modifying Anti Rheumatic Drug), for example Methotrexate, Sulfasalazine (Azulfidine), Gold, Hydroxychloroquine, Azathioprine (Imuran), Leflunomide and Ciclosporin may be prescribed. A DMARD has different mechanisms of action and suppresses joint inflammations in a number of forms of arthritis. When using a DMARD at an early stage of your condition, your joints will be less damaged by the inflammations. These drugs not only relieve symptoms but also slow down progression of the joint damage. Hydroxychloroquine (Plaquenil) may be helpful in some patients with Sjögren’s syndrome by reducing joint pain and rash experienced by some patients. Often, DMARDs are prescribed along with non-steroidal anti-inflammatory drugs, such as NSAIDs and/or low-dosed corticosteroids, to lower swelling and pain. Patients with rare but serious systemic symptoms, such as fever, rashes, abdominal pain, lung or kidney problems, may require treatment with corticosteroids such as prednisone (Deltasone and others) and/or immunosuppressive agents like methotrexate (Rheumatrex), azathioprine (Imuran), mycophenolate (Cellcept) or cyclophosphamide (Cytoxan).
• Fatigue symptoms
The bodily fatigue can become so severe that you are very limited in your daily life. The lack of energy prohibits you from doing normal daily activities. The fatigue can be caused by the inflammations themselves, the reaction of your body to those inflammations and possibly anemia. With sufficient physical activity you can start rebuilding your energy.

Use of drugs and adherence

• It is important that you take the drugs as prescribed. In order to get your illness under control, it is very important that you take your drugs on a regular basis every day. If you do not, there is no good concentration of the drug in your blood and therefore the drug will work less well.
• Do you have trouble remembering when and how many of your drugs you should take on a daily basis and at what time of the day? Then buy a drug dispenser, in which you can sort your drugs per day.
• Do you have difficulty or objection to taking the drug prescribed to you, for example because of possible side-effects? Then that can lead to you no longer taking the drug regularly. Discuss this with your doctor!

Deterioration of your illness and/or complications
The doctor will look at:
• The dosage and amount of drugs you use.
• Switching to another drug in the same type or a completely new type of drug.
• Combining different drugs at the same time.

Your doctor can tell you
• whether the drug can work for you.
• how you can best use the drug.
• how much and how often you can use the drug.
• how you can best reduce the drug.

You should always tell your doctor or specialist
• if you use other drugs (bought or prescribed by another doctor).
• if you have another medical condition.
• whether you will be operated on soon.
• if you have previously been prescribed an anti-inflammatory analgesic that has caused side-effects.
• whether you want to become pregnant or are pregnant.
• if you are breast-feeding.
This is important because your doctor or specialist has to make a careful choice between different drugs.

Side-effects
• All drugs may have side-effects when used, so ask your doctor or pharmacist what side-effects you can expect or read the leaflet.

Reduce or stop
• If you stop using a drug yourself or reduce the number of drugs yourself, your symptoms may worsen. Always consult your doctor or specialist first if you want to use less drugs or want to stop.

Alternative treatments

There are many types of alternative treatments. This refers to all treatments that fall outside normal scientific medical care. No scientific evidence has been provided for the operation of these treatments. The alternative treatments are also called ‘complementary‘ because they can supplement the regular medical treatment by your doctor.
Many people choose an alternative treatment in addition to their regular medical treatment. They hope that this helps extra against their complaints or better helps to deal with the complaints.

Can an alternative treatment be a replacement for your regular medical treatment?
No, if you opt for an alternative treatment method, it is always a supplement to your regular medical treatment. You should not stop your regular treatment, because otherwise you run unnecessary health risks. Always consult your attending doctor before you start an alternative treatment.

What alternative treatments are there for example?
There are many different alternative treatment methods available, which can also be combined. Some examples are:
• Chinese medicine (acupuncture, pressure point massage, nutrition and tai chi).
• homeopathy (products made from plants and minerals).
• Bowen therapy.
• Ayurveda.
• Bach flower treatment.
• shiatsu, foot-sole and classic massage.
• Touch for Health.
• Reiki.
• dietary supplements.

What do you have to pay attention to?
• Many alternative treatments have not shown that they actually work. If you choose to try alternative treatment, make sure that your complaints do not increase. Stop an alternative treatment as soon as your symptoms increase.
• Always consider first why you want to follow an alternative treatment.
• Prepare yourself by looking up and reading information about the alternative treatment. Consult with your attending doctor, because certain complaints may be reduced by some alternative treatment methods.
• Determine yourself in which alternative method you trust for the relief of your complaints and whether you want to start.

What can you do best when choosing an alternative treatment?
• Always consult your doctor about the alternative treatment method you want to follow.
• Consult with your attending doctor and with the alternative therapist if they want to discuss your treatment with each other.
• Choose an alternative therapist who has followed a recognized vocational training and is affiliated to a professional organization.
• Ask your alternative therapist in advance about the purpose, duration, costs and risks of the treatment. How much money you spend depends on which treatment you choose and how long it takes.
• Do not stop your regular medical treatment, as this may worsen your symptoms.
• Weigh during treatment whether you want to continue or stop if your symptoms get worse, if you do not notice any effect of the alternative treatment or if you get side effects.

Why is your food important?

• Healthy nutrition is important to get the vitamins and minerals and other nutrients that your body needs.
• Obesity creates risks for your health and disease progression. In the case of arthritis and obesity, for example, obesity plays an important role in overburdening and osteoarthritis in the knees, hips and ankles. The pressure on your joints is then simply too great. Healthy eating and exercise (exercising a sport and active in the home and outdoors) can help to reduce or prevent excess weight.
• A healthy diet is always important and the dietitian can support you with the right dietary advice.

What is a healthy diet?
With a healthy diet your body gets the right amount of good nutrients, which it needs. You eat the quantities that your body needs. The dietitian can support you with the right nutritional advice.
The 5 courses to choose from are:
• Vegetables and fruit
• Bread, cereal products and potatoes
• Fish, legumes, meat, egg, nuts and dairy
• Lubrication and preparation fats
• Drinks.

Where can you get advice for a healthy diet?
• You can request advice from your doctor or a dietitian. The doctor can refer you to a dietitian. Some diets may possibly help against your symptoms. Consult with your doctor or dietitian if you want to try a certain diet. And make sure that you do not omit important foods from your daily diet.

What can you do with a painful or dry mouth?
Sometimes you can suffer from a dry or painful mouth for various reasons, also due to your illness. Tips:
• by chewing (for example piece of cucumber, sugar-free candy or chewing gum) and sucking (ice cube) the salivary glands are stimulated to produce saliva.
• good oral care is important: good tooth brushing, flossing and the use of mouthwash.
• rinse your mouth regularly, drink small amounts of water and use a mouth sprayer if necessary.
• let hot drinks cool down first.
• use ice or cold dishes, because the cold numbs the pain.
• do not use sharp herbs and spices, fruit juice, carbonated soft drinks, alcoholic beverages, very salty foods and sour food.
• food with hard crusts, nuts, bones and bones can cause injuries.
• use soup, gravy or sauce with the hot meal to make the food smoother.
• spreadable cheese, spreadable paté or salad, jam or honey on bread, porridge, drinking breakfast and custard, for example, swallows easier than dry spreads.
• if you need to use ground or liquid food, you can use a mixer to grind your meal with some extra moisture.

In some forms of arthritis or use of certain drugs intestinal complaints can occur. The intestinal complaints can arise from the influence of certain drugs on food intake. Conversely, the food you eat can have an effect on the way your drugs work.

Dietary supplements, fish fatty acids, glucosamine and vitamin D?
• Dietary supplements are available as pills, powders, drops, capsules or drinks and are intended as a supplement to inadequate daily nutrition. They contain vitamins, minerals or bio-active substances. These synthetic or isolated vitamins, minerals or bio-active substances have the same effect as the vitamins and minerals that are already naturally in your food and drink.
Many people choose an additional supplement, in addition to their daily diet. The users of dietary supplements indicate that they experience positive effects of the use of certain herbs, vitamins and minerals. The body absorbs the nutrients in pills more easily than the nutrients in food. But if you eat healthy and varied, you do not need additional nutritional supplements, because you already get enough nutrients, minerals and vitamins. Always report to your doctor and pharmacist that you are using dietary supplements.
• Fish fatty acids appear to have a mild anti-inflammatory effect with a high intake. Research has been done especially in rheumatoid arthritis. The advice is to eat oily fish twice a week.
• Glucosamine can act as a mild painkiller for osteoarthritis in the knee, but does not stop arthritis.
• Our body naturally makes vitamin D under the influence of outdoor sunlight. Vitamin D may have a beneficial effect in inflammatory arthritis, but that has not yet been proven sufficiently. People with Lupus erythematosus get vitamin D prescribed as they are not often outside, because sun exposure can lead to lupus flares and skin problems. Vitamine D is given with calcium tablets to ensure a good intake in the body, when you have osteoporosis or osteoarthritis.

Living with Sjögren’s syndrome

Sjögren’s syndrome is a chronic disease and cannot be cured, but in many cases proper treatment helps to alleviate symptoms. People with Sjögren’s syndrome usually are able to live normal lives with very few adjustments.
• Dry eyes
It is important that you drip the eyes with regularity at certain times of the day. You must also use the correct drop technique. This ensures a safe, hygienic and effective treatment. How do you know if you drip the right way? Ask your doctor for advice!
• Dry mouth
Drink small sips of water regularly and use sugar-free sweets or sugar-free chewing gum. Avoid dry food such as crackers and biscuits and be careful with alcohol and coffee (caffeine). Breathe as much as possible through the nose, because that prevents extra dehydration of your mouth.
• Dental care
Polish with fluoride toothpaste and use floss and toothpicks. To prevent dental decay eat as many sugar-free products as possible.
• Dry skin
Use the shower or bath briefly, because your skin quickly dries out from too long showering or bathing. A moisturizing lotion for sensitive skin can help dry skin. At home you can have a humidifier installed and perhaps at work. A humidifier counteracts the drying out effect of the central heating.
• Joints and muscles
In order to keep stiff, painful joints supple and to reduce pain, it is important to exercise regularly, alternating with moments of rest. A warm environment and relaxation exercises are important to relax the muscles.
• Dry vagina
Many women with Sjögren’s syndrome suffer from a dry vagina, use a lubricant for this.
• Fatigue
Physical activity is important when tired. This improves the physical condition and provides more energy. Even then do not schedule too many activities in one day and ensure enough moments of rest during the day.

Patient Education Library
Sjogrens Syndrome
https://www.ypo.education/rheumatology/sjogrens-syndrome-t89/video/

Videos sources

Johns Hopkins Rheumatology I Sjögren’s Syndrome: Signs and Symptoms I https://youtu.be/ZKaWs8vtJUU
Osmosis I Sjogren’s syndrome I https://youtu.be/79mcjBzQghI
Patient Education Library I Sjogrens Syndrome I https://www.ypo.education/rheumatology/sjogrens-syndrome-t89/video/