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Complaints with spondyloarthritis

Health problems
• inflammation of the joints of the pelvis and the spine. The inflammations are painful and stiffness can develop. Eventually the inflammations lead to a stiffening of the spine. Sometimes the inflammations also occur in the joints of the chest and of the arms or legs, or – in a single case – in the Achilles tendon. The disease can be erratic with alternating active and quiet periods. The condition is strikingly common in people who also have a chronic bowel disorder, such as Crohn’s disease or ulcerative colitis.
• gradual development of pain and stiffness in the pelvis and the lower back (especially in the SI or sacrale joint). Women often suffer from pain and stiffness in the back. The pain and stiffness is mainly in the morning when you get up and when you are in the same position for a long time. The back pain is usually on one side, sometimes you feel pain on the left, then on the right again. Symptoms may appear to be herniated at the beginning with radiating pain to the leg.
• extension of complaints to inflammation in the chest (tightness and pain) and neck and to inflammation in the hip joints, knees and arms or legs (swollen and painful joints). Because the ribs are sometimes affected, breathing can be painful. Later, the Achilles tendon and vertebrae of the upper back and neck may also become inflamed and stiff.
The pain decreases with light effort or, for example, by taking a hot shower. If you sit or lie in the same position for a long time, the pain and stiffness will worsen, especially in the morning. The complaints are less affected by movement. You can also have periods in which you have no complaints at all. In the long run the spine can stiffen. The pain is less because the inflammation is over. Some people lean very much forwards because of the stiff spine. They can no longer keep their trunk straight. Other people are actually going to walk very upright.
• osteoporosis, which occurs in up to half of patients with ankylosing spondylitis (AS), especially in those whose spine is fused. Osteoporosis can raise the risk of spinal fracture.
• eye inflammation, inflammation of part of the eye, called uveitis, which occurs in about 40% of patients with spondyloarthritis. The eye is red, painful, traumatized and cannot tolerate light. The eyesight is somewhat blurred. The inflammation usually does not damage the eye with a timely treatment, but can return a number of times. Steroid eye drops most often are effective, though severe cases may need other treatments from an ophthalmologist (eye MD).
• intestinal inflammation, inflammatory diseases of the intestines, such as Crohn’s disease and ulcerative colitis, weight loss, fatigue, a feverish feeling and night sweats can occur. The complaints are not always very present, there are varying activity periods. They may be so severe that it requires treatment by a gastroenterologist (a doctor who specializes in digestive diseases).
• inflammation of the aortic valve in the heart, which can occur over time in patients with ankylosing spondylitis (AS). Your doctor should check your heart to make sure you do not have this problem.
• psoriasis, a patchy skin disease, which if severe will need treatment by a dermatologist (skin doctor).

Consequences of complaints
Serious complaints can lead to increased absenteeism and a greater degree of incapacity for work. The pain and fatigue in ankylosing spondylitis (AS) often hinders patients severely in their daily functioning. This brings with it all kinds of personal and social limitations. This often leads to feelings of frustration, isolation and depression. The emotional burden of the disease can therefore be very great.

Diagnosis of spondyloarthritis

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?
If you have complaints, the doctor will perform a physical examination and blood tests. This is necessary to confirm the diagnosis.

It sometimes takes a long time before it becomes clear whether you have the disease ankylosing spondylitis (AS). This is because the condition is often mistaken for ‘normal‘ pain in the back.

Physical examination
You may need an X-ray of the sacroiliac joints, a pair of joints in the pelvis. X-ray changes of the sacroiliac joints, known as sacroiliitis, are a key sign of spondyloarthritis. If X-rays do not show enough changes, but the symptoms are highly suspicious, your doctor might order magnetic resonance imaging, or MRI, which shows these joints better and can pick up early involvement of inflammations in the spine before an X-ray can.
The initial complaints of ankylosing spondylitis (AS) are usually quite common. They can also indicate other conditions. Not everyone with low back pain or stiffness has ankylosing spondylitis (AS). As a result, it can take a while for the correct diagnosis to be made. Usually, there is nothing to see on X-rays at first. The stiffening of the spine is only visible on X-rays after a few years.

Blood tests
Additional information comes from blood tests, where an increased CRP level and the sedimentation rate of the red blood cells may indicate active inflammation.
• C-reactive protein (CRP) is a substance produced by the liver in response to inflammation. A high level of CRP in the blood is a marker of inflammation. It can be caused by a wide variety of conditions from infection to cancer.
• Sedimentation speed. Blood tests also measure the degree of inflammation through the sedimentation rate of the red blood cells. An erythrocyte sedimentation rate (ESR) test is sometimes called a sedimentation rate test or sed rate test. The test measures the sedimentation rate of red blood cells (erythrocytes) through 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 the sedimentation of the red blood cells. The length of this column of plasma is measured after one hour and expressed in millimetres per hour (mm/hour). This blood test doesn’t diagnose one specific condition. Instead, it helps your doctor determine whether you’re experiencing an inflammation. This can be the result of infections (bacteria, viruses), tumors and autoimmune diseases (such as arthritis).
• Human leukocyte antigen HLA-B27. An indication of ankylosing spondylitis (AS) may be the presence of the human leukocyte antigen HLA-B27, the inherited factor in approximately 90% of patients with ankylosing spondylitis in the blood. But the presence or absence of the HLA-B27 gene does not say anything, because approximately 10% of patients with ankylosing spondylitis do not have this factor in their blood. The HLA-B27 gene also occurs in the blood of people who do not have ankylosing spondylitis (AS). But if you have symptoms that indicate ankylosing spondylitis (AS) or other forms of spondyloarthritis, the gene HLA-B27 can be an indication that this disease is involved.

Treatment with spondyloarthritis

With a good treatment the inflammation, pain and stiffness can be reduced and the disease can be slowed down, but unfortunately not cured.
The two pillars of the treatment are physical therapy and drugs.

Physical therapy
All patients should get physical therapy with joint-directed exercises. Most recommended are regular exercises that promote spinal extension and mobility.

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.
The aim of treating the forms of spondyloarthritis with drugs is to inhibit the immune system so that the joint inflammation stops without reducing the resistance to pathogens. Good treatment can prevent further damage to the joints. The prescribed drugs ensure that you suffer less from pain and that the inflammation of the joints is slowed down. In the choice of drugs, your doctor looks at the severity of the disease, the side effects that the drug can give and the reaction of your body to the drug. Again and again, your doctor weighs up the damage that the disease can cause to the joints and the possible side effects of a drug. How this balance goes down is different for everyone.

There are many drug treatment options:
• 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, 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. Often, DMARDs are prescribed along with non-steroidal anti-inflammatory drugs, such as NSAIDs and/or low-dose corticosteroids, to lower swelling and pain.
• A biologic DMARD (TNF alpha inhibitors, Interleukin inhibitors, B cell inhibitors and T cell inhibitors). TNF alpha blockers are very effective in treating both the spinal and peripheral joint symptoms of spondyloarthritis. However, anti-TNF treatment is not without side-effects, including an increased risk for serious infections. That is why first, the doctor will check if you do not have other infections, tuberculosis, heart failure or a malignant disease. These diseases can in fact be exacerbated by treatment with a biologic and must therefore be treated first. If you are a patient with a latent tuberculosis (no symptoms) you may develop an active infection. Therefore, you and your doctor should weigh the benefits and risks when considering treatment with a biologic. Patients with arthritis in the knees, ankles, elbows, wrists, hands and feet will have a DMARD therapy before an anti-TNF treatment.
A biologic is a drug that can affect your immune system. If you are healthy, the immune system itself produces enough antibodies to defend itself against pathogens (viruses and bacteria). This balance is disrupted in people with chronic inflammatory disease. A biologic can restore that balance.
TNF alpha blockers that the FDA has approved for use in patients with the disease ankylosing spondylitis are: infliximab (Remicade) – etanercept (Enbrel) – adalimumab (Humira) – golimumab (Simponi).
• A biosimilar. A biosimilar drug is a drug that is developed to be highly similar and clinically equivalent to an existing biologic and used in treating both the spinal and peripheral joint symptoms of spondyloarthritis.. A biosimilar drug contains a version of an active substance of an already approved biologic drug (the ‘reference drug’ or ‘originator drug’). Similarity to the reference biologic in terms of quality, structural characteristics, biological activity, safety and efficacy must be established, so that there are no clinically meaningful differences from the biologic in terms of quality, safety and efficacy. Research has shown that the biosimilar is just as effective as the original biologic inhibitor in the treatment of arthritis.
Biosimilar drugs are not the same as generic drugs, which contain simpler chemical structures and are identical, in terms of molecular structure, to their reference drugs.

Surgical treatment
Surgical treatment is very helpful in some patients. Total hip replacement is very useful for patients with hip pain and disability due to joint destruction from cartilage loss. Spinal surgery is rarely necessary, except for patients with traumatic fractures (broken bones due to injury) or to correct excess flexion deformities of the neck, where the patient cannot straighten the neck.

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 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 spondyloarthritis

If you have ankylosing spondylitis or another form of spondyloarthritis, then pain, fatigue and stiffness can be continuous or off and on. Despite these symptoms, most patients with spondyloarthritis lead productive lives and have a normal lifespan, especially with the newer treatments available.

Body posture, rest and movement
You can do a lot yourself by regularly exercising. Frequent exercise is essential to maintain joint and heart health. The specialist will primarily refer to physical therapy, so a physiotherapist or occupational therapist is also involved in the treatment. Treatment is aimed at increasing physical well-being, improving posture and increasing mobility.
Staying in movement is essential to prevent stiffening of the spine. Regularity and discipline are important in this: through exercises during active and non-active periods of the disease, you can considerably slow down the disease process.

Advice
• ensure sufficient rest.
• when lying in bed: lie as flat as possible and change supine position with prone position.
• avoid overweight and eat healthy.
• avoid overloading your back.
• ensure a good walking and sitting posture.
• change posture regularly, alternating with sitting down.
• practice a sport such as swimming, badminton, volleyball, basketball, walking or cycling.
• use the soothing warmth of bath, shower and sauna (in consultation with your doctor).
• quit smoking. Smoking aggravates spondyloarthritis and can speed up the rate of spinal fusion in ankylosing spondylitis (AS).

The development of ankylosing spondylitis (AS)
How your ankylosing spondylitis (AS) will develop further, cannot be predicted. The severity of the disease varies greatly. The disease can be very progressive, which means that the symptoms get worse over the years. This causes permanent damage to the pelvis and stiffening of the joints of the spine. But with the current treatment the progress of the disease process can be stopped much better than in the past. The disease cannot be cured, but with a good treatment the symptoms can be limited.
Early diagnosis of ankylosing spondylitis (AS) is therefore of great importance for limiting long-term damage.

Videos sources

Healthline I Ankylosing Spondylitis Overview I https://youtu.be/PFmG2uNnT6E
SpineLive I Ankylosing Spondylitis Symptoms I https://youtu.be/o74V3eDuny0