Juvenile Idiopathic Arthritis (JIA)
Juvenile Idiopathic Arthritis (JIA), also referred to as Juvenile Rheumatoid Arthritis, is the most common type of chronic arthritis in children and adolescents. Juvenile means that a child or adolescent gets the first symptoms of the disease before it is 16 years old. The term idiopathic means “of unknown origin”. Arthritis means chronic inflammation in the joints, that lasts for more than three months. This inflammation begins before the patients reach the age of 16 and symptoms must last more than 6 weeks to be called chronic. JIA may involve one or many joints, affect the eyes or cause other symptoms such as fevers or rash.
Researchers are uncertain what causes JIA, because there is no evidence that foods, toxins, allergies or lack of vitamins play a role in developing JIA. Current research indicates that there is a genetic predisposition to JIA. More than a dozen genetic markers have already been identified for JIA. However, genetic markers alone can’t determine who will get arthritis. It is believed that a trigger, like a virus, can start the disease process in those children with the genetic tendency.
There are seven JIA subtypes. Systemic JIA is considered an auto-inflammatory disease. The other types are considered autoimmune diseases.
• Systemic JIA (SJIA).
• Oligoarticular JIA.
• Polyarticular JIA with two subtypes.
• Enthesitis-related JIA.
• Juvenile psoriatic arthritis.
• Undifferentiated arthritis.
What is the difference between an autoimmune disease and an autoinflammatory disease? The main difference is that the autoinflammatory diseases are hereditary, with the mistakes, as it is, in the genetic material: the genes. In an autoimmune disease, the immune system is disrupted, causing the innate immune system to attack it’s own body. An autoimmune disease is rarely hereditary and the error lies in the specific defense or the defense of a pathogen. In autoimmune diseases are also antibodies in the blood, which are not present in autoinflammatory diseases.
It is estimated that nearly 300,000 children, from infants to teenagers, in the U.S. have some form of arthritis.
- Forms of Juvenile Idiopathic Arthritis
- Use of drugs and adherence
- Alternative treatments
- Living with your illness
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Juvenile idiopathic arthritis (JIA) is the most common type of chronic arthritis in children and adolescents. Juvenile means that a child or adolescent gets the first symptoms of the disease before it is 16 years old. The term idiopathic means “of unknown origin”. Arthritis means chronic inflammation in the joints, that lasts for more than three months. This inflammation begins before the patients reach the age of 16 and symptoms must last more than 6 weeks to be called chronic. JIA may involve one or many joints, affect the eyes or cause other symptoms such as fevers or rash.
Researchers are uncertain what causes JIA, because there is no evidence that foods, toxins, allergies or lack of vitamins play a role in developing JIA.
Current research indicates that there is a genetic predisposition to JIA. More than a dozen genetic markers have already been identified for JIA.
However, genetic markers alone can’t determine who will get arthritis. It is believed that a trigger, like a virus, can start the disease process in those children with the genetic tendency.
Except in rare circumstances, this condition is not directly inherited from the mother or father.
Image ID 3257994 © Sebastian Kaulitzki | Dreamstime.com
Forms of Juvenile Idiopathic Arthritis
There are seven JIA subtypes. Systemic JIA is considered an auto-inflammatory disease. The other types are considered autoimmune diseases.
• Systemic juvenile idiopathic arthritis (SJIA) is considered an auto-inflammatory disease. A healthy immune system fights invaders, such as viruses and bacteria. In autoimmune or inflammatory diseases, the immune system does not work properly. It becomes overactive even when there is no infection to fight or it mistakenly attacks healthy cells and tissues. Systemic onset JIA may cause inflammation of the internal organs as well as the joints, though joint swelling may not appear until months or even years after the fevers began. Arthritis may persist even after the fevers and other symptoms have disappeared.
Systemic JIA affects about 10% of children with JIA. Systemic JIA causes inflammation in one or more joints and begins often with repeating fevers that can be 103°F or higher, often accompanied by a salmon-colored rash that comes and goes. Other possible symptoms include inflammation of the heart (pericardium) or lungs (pulmonary membrane), anemia, enlarged lymph nodes, enlarged liver or spleen. Anemia (a low red blood cell count) and elevated white blood cell counts are also typical findings in blood tests ordered to evaluate the fevers and ongoing symptoms.
Systemic juvenile idiopathic arthritis (SJIA) and adult-onset Still’s disease are similar conditions, the only major difference is the age at which symptoms begin.
• Oligoarticular JIA causes arthritis in four or fewer joints in its first stages, typically the large ones (knees, ankles, elbows). The prospects for this type of childhood arthritis are often good. The joint inflammations return a few times and then often stay away for good. Usually the joints do not get damaged and the daily functioning remains good. It affects about half of all children with arthritis and girls are more at risk than boys. But sometimes the disease goes less well and after a while ignites more than 4 joints (extended oligo-articular JIA). Some older children with oligoarticular JIA may develop “extended” arthritis that involves many joints and lasts into adulthood. Children developing the oligoarticular form of JIA when younger than seven years old, have the best chance of having their joint disease subside with time. They are, however, at an increased risk of developing an inflammatory eye problem (iritis or uveitis) than those with the other subtypes. There are two forms of oligoarticular juvenile arthritis:
• Early onset oligoarticular juvenile arthritis. The early form mainly occurs in young girls. In addition to joint inflammation there is a chance of eye inflammation (uveitis). The eyes should therefore be checked regularly by an ophthalmologist, even if there are no complaints. If anti-nuclear antibodies (ANA) are brought into the blood by the treatment of the disease, the chance of eye inflammation is even greater. Children with a positive test for antinuclear antibody (ANA) are at greatest risk of developing an eye inflammation. The eye inflammation may persist independently of the arthritis. Because this eye inflammation usually does not cause symptoms, regular exams by an ophthalmologist (eye doctor) are essential to detect these conditions and identify treatment to prevent vision loss.
• Late onset oligoarticular juvenile arthritis. The late starting form occurs mainly in boys during puberty. In this form the joint inflammation occurs in the large joints of the lower limbs in combination with the enthesitis. Usually starting with an inflammation in a large joint, for example a knee or at the site where a tendon attaches to the bone (enthesitis). In enthesitis there is an inflammation of the ‘enthesis‘, that is the transition point of the tendon and the bone. Enthesitis is common on the soles of the feet and the back of the heels and on the attachment of the Achilles tendons and can hurt a lot.
The oligoarticular juvenile idiopathic arthritis can eventually develop into ankylosing spondylitis (AS). The hereditary factor HLA B27 is common in boys and this type of childhood arthritis often starts after the 6th year of life. The course of this form varies. In some people, the disease becomes calmer after a while, but in others the disease spreads to the lower part of the spine (sacroiliitis), joints of the pelvis and the coccyx (tailbone). Extension to the lower part of the spine is called juvenile spondyloarthritis. If the first complaints develop after the 16th year, then the disease is called ankylosing spondylitis.
• Polyarticular JIA has two subtypes and causes inflammation in five or more joints, often the small joints of the fingers and hands. But weight-bearing joints and the jaw can also be affected. They are often symmetrical inflammations, because the inflammations occur on both sides of the body in the same place. There is a chance of permanent joint damage with prolonged inflamed joints. The disease can start at a very young age, but also in puberty. Children diagnosed with polyarticular JIA in their teens may actually have the adult form of rheumatoid arthritis at an earlier-than-usual age. There are two forms of polyarticular JIA:
• The rheumatic factor (RF) positive polyarticular JIA. There are more than 5 inflamed joints and the doctor finds the rheumatic factor in the blood. It can be a serious and long-lasting form of childhood arthritis and is more common in girls than in boys.
• The rheumatic factor (RF) negative polyarticular JIA. There are more than 5 inflamed joints, but the doctor finds no rheumatoid factor in the blood. This form of childhood arthritis can occur at all ages.
Rheumatoid factors are proteins produced by your immune system that can attack healthy tissue in your body. High levels of rheumatoid factor in the blood are most often associated with autoimmune diseases, such as rheumatoid arthritis and Sjogren’s syndrome. But the rheumatoid factor may be detected in some healthy people and people with autoimmune diseases sometimes have normal levels of rheumatoid factor. Rheumatoid factor-positive polyarticular JIA closely resembles adult rheumatoid arthritis and can be a more severe disease than the RF-negative variation. About 25% of children with JIA will have the polyarticular form.
• Enthesitis-related JIA is characterized by tenderness where the bone meets a tendon, ligament or other connective tissue. This tenderness, known as enthesitis, accompanies the joint inflammation of arthritis. It most often affects the hips, knees and feet. Enthesitis-related arthritis may also involve inflammation in parts of the body other than the joints, involving attachments of tendons (fibrous tissue that attaches muscle to bone), ligaments (fibrous tissue that attaches bone to bone) as well as the spine. This is often referred to as spondyloarthritis or ankylosing spondylitis. The children may have joint pain without obvious swelling and may complain of back pain and stiffness. Enthesitis-related arthritis is more common in boys and usually begins between the ages of 8 and 15. There is sometimes a family history of arthritis of the spine. Affected children will often test positive for the HLA-B27 gene.
• Psoriatic juvenile arthritis involves arthritis that usually occurs in combination with a skin disorder called psoriasis. Psoriasis can occur sooner or later than arthritis. With psoriasis, there is a problem with flakiness and red skin, especially on the elbow and knees. Sometimes a whole toe or finger swells (a ‘sausage finger’) or there is spot formation on the nails. The children have both arthritis and a skin disease called psoriasis or a family history of psoriasis in a parent or sibling. Typical signs of psoriatic arthritis include nail changes and widespread swelling of a toe or finger called dactylitis. Joint symptoms include pain and swelling in one or more joints, often the wrists, knees, ankles, fingers and toes. Symptoms of psoriasis include a scaling red rash, commonly seen behind the ears, on the eyelids, elbows, knees, at the scalp line or in the belly button. The disease can spontaneously come to a halt, but also worsen with more skin complaints and/or joint complaints.
• Undifferentiated arthritis is the term used to describe a juvenile arthritis that does not fit into any of the above types or that involves symptoms which occur in two or more subtypes.
When the disease is active, the child can suffer from:
• muscle pain, which can last for several weeks.
• inflamed joints. When the arthritis is more active, there are more inflamed, warm and swollen joints. An inflamed joint is warm, swollen, stiff and less able to move. This occurs especially in the morning when you wake up or when you have been in the same position for a long time. The pain is reduced by movement. At the end of the day, the pain and stiffness can be made worse by fatigue.
• chance of high fever, soft pink/red spots on the skin and feeling sick.
• ignition of various organs. Usually there is no sign of inflammation in the liver, spleen or lymph nodes. An inflammation of the heart (pericarditis) or inflammation of the lungs (pleuritis) is noticed by the chest pain in breathing and tightness.
• pain. It is of course logical to move or exercise the painful joint no longer. Then there is no pain anymore. Children may start crawling again instead of walking and tumbling instead of crawling. As they get older, activities will be slowed down (unnoticed). Not moving is not a good idea. Without regular exercise, the joints become even stiffer and the muscles even weaker. Exercising is also important to learn and maintain a good attitude.
• anterior uveitis. There is also a risk of chronic anterior uveitis, which is a chronic inflammation of the iris in the eye. In this membrane are the veins that provide the blood supply of the eye. The inflammation is often accompanied by red and watery eyes and an increased sensitivity to light.
• growth deficit. The body growth slows down, if there are for a long time inflamed joints. Some drugs (corticosteroids) reinforce this growth retardation. A growth retardation is often seen not only by the length of the body, but also on the growth of the jaw, hands and feet. If a large growth retardation occurs, treatment with a growth hormone is possible.
With a healthy growth development, the natural growth hormone is sufficient. A natural growth hormone is a protein that is made in the pituitary gland. The pituitary gland is a hormone-producing gland at the bottom of the brain in the skull base. In the pituitary gland hormones are made that are important for the functioning of other glands. A growth hormone is delivered by the pituitary gland to the bloodstream, approximately 6 times per 24 hours. The growth hormone also comes into the liver where it ensures that growth factors are made. Together with the growth hormone, the growth factor Insulin-like Growth Factor (IGF-1) stimulates bone growth, which increases the length. After the growth period, the growth hormone is important for the water balance in the body, a good balance of the amount of fat and the formation of the fat in the body, the build up of the muscles and in all organs with the metabolism. In the case of a deficiency of growth hormone, many organs can therefore work less well.
If a large growth delay occurs, then treatment with an artificial or biosynthetic growth hormone is required. Growth and development problems can be treated with the artificial or biosynthetic growth hormone. A biosynthetic growth hormone is made in a factory and is identical to the natural growth hormone that is made in the body of a child. The biosynthetic growth hormone is a fragile protein hormone that would be broken down directly by the stomach acid when taken as a tablet. It is therefore administered daily as a subcutaneous injection. This treatment with the biosynthetic growth hormone has been used for years in children with too small a length, but not all children with too small a length can be treated with this growth hormone.
• osteoporosis. Bone decalcification (osteoporosis) can occur due to the arthritis itself or due to the use of drugs (for example prednisone). The bones become more fragile and can therefore break faster. With a special X-ray examination (bone density measurement) the doctor can measure the amount of calcium in the bones. If necessary, the doctor can prescribe drugs and calcium.
Your doctor will base your diagnosis on a combination of the medical history, his findings and additional test results.
At the first visit, the doctor asks you and your parents 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 school 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?
JIA may be difficult to diagnose. The diagnosis of JIA depends on physical findings, medical history and the exclusion of other diagnoses.
The doctor will perform a complete physical examination looking at the joints, painful tendons, skin disorders and eye problems. Some children may not complain of pain at first and joint swelling may not be obvious.
There is no single blood test that can be used to diagnose the condition. Blood tests are needed to see if there is another disease present. The doctor looks at the blood sedimentation and in the blood for the rheumatoid factor, the presence of antinuclear antibodies (ANA) and the genetic factor HLA-B27. If one of the three factors mentioned in the blood is found, this can help to determine the type of juvenile arthritis.
• Sedimentation speed. Blood tests also measure the degree of inflammation through the sedimentation rate of the red blood cells. The erythrocyte sedimentation rate (ESR) is measured by a laboratory test. An erythrocyte sedimentation rate (ESR) test is also 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 does not diagnose one specific condition. Instead, it helps your doctor to determine whether you are experiencing an inflammation. This can be the result of infections (bacteria, viruses), tumors and autoimmune diseases (such as arthritis).
• the rheumatoid factors are proteins that can attack healthy cells in the body if the immune system is disrupted. A rheumatic factor is an antibody that does not directly damage the joints, but causes inflammation. These inflammations then damage the joint tissue. If the rheumatoid factor is present, the progression of the disease is often more serious. Children with JIA usually have a negative blood test on the rheumatic factor.
• anti-nuclear antibodies (ANA). Anti-nuclear antibodies (ANA) are antibodies against parts of the own cell nucleus and are also called antinuclear factor (ANF). ANA is an antibody against a nucleus of cells, which is sometimes present in the blood of people with a certain form of arthritis. In the normal situation, the immune system produces antibodies against foreign proteins (antigens), but not against human proteins. But in some situations, such as with a certain autoimmune disease, antibodies to human proteins are produced. These are then often present in an increased amount.
• human leukocyte antigen HLA-B27. The test determines whether the HLA-B27 protein is present on the white blood cells (leukocytes). HLA-B27 belongs to the group of HLA proteins, which play an important role in the immune system against foreign cells. Normally, the foreign substances are neatly cleaned up so that we do not get sick. In an autoimmune disease, this defense mechanism is disrupted and the body’s own cells are also cleaned up by mistake. This can lead to many diseases, the so-called autoimmune diseases, which are often accompanied by inflammation. Everyone has it’s own unique defense mechanism that is hereditary. If the HLA-B27 protein is present, there is an increased risk of an autoimmune disease.
Other typical symptoms include:
• stiffness when awakening.
• reluctance to use an arm or leg.
• reduced activity level.
• persistent fever.
• joint swelling.
• difficulty with fine motor activities.
Other conditions that can look like JIA, including infections, childhood cancer, bone disorders, Lyme disease and lupus erythematosus also must be ruled out before a diagnosis of JIA can be confirmed.
X-rays or MRI scans
On an X-ray or MRI scan the doctor can see if a joint is inflamed or damaged as a result of inflammation or if there is tendon inflammation. In the long term, X-rays can show the changes in the bones or joints that are characteristic of juvenile arthritis.
The medical treatment will last as long as the disease persists. The duration of the disease cannot be predicted. During the illness there can be quiet and active periods that lead to important changes in treatment. Completely stopping treatment is not considered until the juvenile arthritis has not returned for a longer period (at least 6-12 months). Doctors often follow children and adolescents with juvenile arthritis until they reach adulthood, even if the arthritis is quiet.
The best care for children and adolescents with arthritis is provided by a pediatric rheumatology team. The core team may consist of a pediatric rheumatologist, physical and occupational therapist, social worker and nurse specialist. This core team can coordinate care with the pediatrician, other physicians (such as an ophthalmologist or orthopedic surgeon) and other health professionals (dentist, nutritionist or psychologist). The core team can reach out to schools and additional community resources to ensure that the child or adolescent receives the best care possible.
The overall treatment goal is to control disease symptoms, prevent joint damage and maintain bodily functions.
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.
Drugs are the most important means of controlling the pain and inhibiting inflammation. The choice of medication depends on the severity of the disease and the side-effects of the drugs. Sometimes drugs give a lot of side-effects, but they help to keep the disease under control. Then the choice becomes difficult. What is more important: stop the unpleasant side-effects or get the disease under control? Is it better to choose another drug and thus reduce the side-effects? Is it better to continue with a certain drug in order to minimize the risk of joint damage?
The doctor also looks at the way of administering the medication. Drugs sometimes give less side-effects when they are given by injection.
• 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. When only a few joints are involved, a corticosteroid can be injected into the joint before any additional drugs are given. Steroids injected into the joint do not have significant side-effects. Oral steroids such as prednisone (Deltasone, Orasone, Prelone, Orapred) may be used in certain situations, but only for as short a time and at the lowest dose possible. The long-term use of steroids is associated with side-effects such as weight gain, poor growth, osteoporosis, cataracts, avascular necrosis, hypertension, and risk of infection.
• A conventional synthetic DMARD (Disease-Modifying Anti Rheumatic Drug). Disease modifying drugs are added as a second-line treatment when the arthritis involves many joints or does not respond to steroid joint injections. The DMARDs include methotrexate (Rheumatrex) and leflunamide (Arava). 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). A biologic response modifier 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 response modifier can restore that balance. The drugs can block the immune system chemical signals that lead to inflammation and joint/tissue damage. Most often, patients take these drugs with methotrexate, as the mix of medicines is more helpful. TNF alpha inhibitors 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. The biologic response modifier drugs include etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira), abatacept (Orencia), anakinra (Kineret), canakinumab (Ilaris), tocilizumab (Actemra) and rituximab (Rituxan).
Tocilizumab (Actemra) is a biologic response modifier drug currently approved to treat adults with moderately to severely active rheumatoid arthritis (RA), adults with giant cell arteritis (GCA) and children ages 2 and above with Polyarticular Juvenile Idiopathic Arthritis (PJIA) or Systemic Juvenile Idiopathic Arthritis (SJIA). Tocilizumab blocks the inflammatory protein IL-6. This improves joint pain and swelling from arthritis and other symptoms caused by inflammation.
• A biosimilar. A biosimilar drug is a drug that is developed to be highly similar and clinically equivalent to an existing biologic. 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.
Other treatments can consist of:
Podiatry is a medical specialty that focuses on the diagnosis, treatment, prevention and management of diseases, defects and injuries of the foot, ankle and lower limb. This includes ankle and foot injuries, problems with gait or walking, complications related to medical conditions such as diabetes and arthritis and diseases of the skin or nail such as cracked heels, ingrown toenails, neuromas, warts and other fungal conditions. Podiatrists are experts in foot, ankle and lower limb health. A podiatrist can correct the position of the feet, the incorrect position of the back, knees or hips with the help of insoles and give advice about the right shoes.
• Occupational therapy
The occupational therapist gives advice on exercise, which body position is best, and on practical adjustments in daily life. Because of the pain of the joint inflammation a body posture can be found by the child where there is less to no pain and the joint can grow into that wrong position. Placement of a splint can counteract this and help to relieve the painful joint.
• Check by an ophthalmologist. There is a chance of getting an eye infection (uveitis). The eyes should therefore be checked regularly by an ophthalmologist, even if there are no complaints.
• The approach to fever. If the body temperature is above 100.4°F, then there is a fever. The normal body temperature is 98.6°F.
Medicines. Paracetamol can provide relief from the fever.
Drink enough water. By an increasing body temperature there is more loss of fluid, so regularly give a small drink.
Do not pack up the child too thick. Make sure the body can lose the heat, let them wear thin clothes (especially when lying under the covers) and do not set the temperature in the room too high.
Resting time. It is good to make sure the child does not get too tired.
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.
• 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.
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.
• Bach flower treatment.
• shiatsu, foot-sole and classic massage.
• Touch for Health.
• 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
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 juvenile idiopathic arthritis
Take the following into account:
• Alternate standing, sitting or walking, so ensure variety in your physical activity.
• Do not sit too long in the same position.
• Do not put a pillow under your knees when sitting or lying down, because the joints can get stuck in their position.
• Take regular rest breaks.
• Do not lift or carry heavy objects.
• Do not walk too many stairs on a day.
• Do not make deep knee bends.
• Let your parents ensure an even warm temperature in the rooms at home.
• Protect your joints from the cold by wearing warm clothes.
• Do not swim in cold water or have a cold bath.
• Practice sports regularly, for example swimming or cycling.
Going to school
• It is important that everyone understands at school that you have juvenile arthritis. The teachers usually do not know how to deal with it. Then it is useful that you tell them what it is like to have juvenile arthritis. Your parents can help with that. Explain what you can and cannot do, for example that you can participate today in the gym class, but that it is too heavy to have to change the location for each class. The most important thing is that the teachers understand what is going on with you, so that they can take better account of you.
Every child with JIA should attend school, participate in extra-curricular and family activities and live life as normally as possible. To foster a healthy transition to adulthood, young people with juvenile arthritis should be allowed to enjoy independent activities, such as taking a part-time job and learning to drive.
• You must deal with your illness in your own way. Sometimes people want to know everything about it, but others get a bit quiet and withdrawn. This may hurt, but it all depends on how you feel yourself.
With juvenile arthritis, your whole life changes. One day you are very quickly tired and it is difficult to concentrate at school. You may have pain and difficulty with walking. The other day you have little pain and less trouble walking and everything runs without major problems.
You can be very tired every day without having a busy day. This is an important difference with ‘normal‘ fatigue. The severity of the fatigue stands in no relation to the activity you have performed. The tiredness is suddenly there, often at the weirdest moments, for example just after getting up or when you have slept well. The fatigue can also be felt as a constant lack of energy.
This fatigue is different from normal fatigue because
• it is suddenly there and without extra effort
• it is more extreme than ‘normal‘ fatigue
• rest and/or sleep do not always help
You say: I am terribly tired, broken or exhausted. This extreme fatigue has become normal and, like pain, is not always visible to others. It disrupts your life and makes it difficult to carry out your daily activities.
Diary. Learn to (re)know your tiredness: by keeping a diary to understand how you get through every day, when you are tired and how that fatigue feels. Maybe this helps to understand the moments when you get tired, so that you are better prepared.
Medical cause. There may also be a medical reason for the fatigue, such as an iron deficiency in your blood, a too high or too low blood pressure or a side-effect of the drugs. With systemic juvenile idiopathic arthritis (SJIA), you can get anemia during inflammation, which also contributes to your fatigue. You may also get a flu-like sensation due to fever, weakness and a lack of appetite.
A positive outlook and continued physical activity will help. Physical and occupational therapy can increase joint motion, reduce pain, improve function and increase strength and endurance. Therapists may construct splints to prevent permanent joint tightening or deformities and work with school-based therapists to address issues at school.
Phoenix Children's Hospital I Juvenile Arthritis Q&A
ACRSimpleTasks I Alexa Sutherland and Her Mom on Life with Juvenile Rheumatoid Arthritis
Arthritis Ireland - Peter's Story - living with Juvenile Arthritis
AmerCollRheumatology I Meet Katie Lynne Emmerson on Growing Up with Juvenile Arthritis
Arthritis Ireland I Living with Juvenile Arthritis - Frankie's Story
Phoenix Children’s Hospital I Juvenile Arthritis Q&A I https://youtu.be/IDnuEpmjKzk
Arthritis Ireland I Peter’s Story – living with Juvenile Arthritis I https://youtu.be/E67Z6UER_Dc
ACRSimpleTasks I Alexa Sutherland and Her Mom on Life with Juvenile Rheumatoid Arthritis I https://youtu.be/mj0T2jYgT4E
Arthritis Ireland I Living with Juvenile Arthritis – Frankie’s Story I https://youtu.be/6Iq8EBAoDAw
AmerCollRheumatology I Meet Katie Lynne Emmerson on Growing Up with Juvenile Arthritis I https://youtu.be/uW97cLG6EhA
Accountability text Juvenile Idiopathic Arthritis (JIA)
The information about Juvenile Idiopathic Arthritis (JIA) is general.
Every situation is different, so if you have any questions or complaints, always consult your doctor, medical specialist or pharmacist.
The patient videos are provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnosis and treatment of a medical or health condition.
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