Arthritis & Rheumatologic Conditions

There’s a lot of disagreement among doctors when it comes to fibromyalgia. Theories differ as to what causes it and how best to treat it. There’s even disagreement about what to call it — some call it a syndrome, others a disorder, still others a chronic condition.

Whatever you label it, and whatever its origins, fibromyalgia presents a very real challenge to those coping with its symptoms each day.

Fibromyalgia is a common chronic pain condition — it affects millions of people in the United States. It’s far more common in females than males and can start when kids are in their teen years or even younger, although it’s most common in women between the ages of 20 and 50.

About Fibromyalgia

Fibromyalgia (fy-bro-my-AL-ja) is a long-term, or chronic, syndrome that causes widespread pain in the muscles, joints, and other soft tissues of the body. The term “fibromyalgia” comes from the Latin word “fibro” for fibrous tissue, and the Greek “myo” for muscle, and “algos” meaning pain. In kids, it is sometimes referred to as juvenile primary fibromyalgia syndrome.

The pain of fibromyalgia is often accompanied by isolated tender or sore areas, fatigue, poor sleep, headaches, and other symptoms. Fibromyalgia is often considered a syndrome rather than a disease because it’s a collection of symptoms that seem to be related but, unlike a disease, there’s no cause that can be identified.

Although fibromyalgia is a chronic condition, its symptoms typically come and go. They can be mild at times, then so severe at others that they interfere with normal activities. Many kids with fibromyalgia can attend school regularly, but their abilities vary depending upon the severity of their symptoms.

Treatment for fibromyalgia focuses on managing the pain and other symptoms. This often involves a combination of medicines and lifestyle changes, such as exercise, relaxation, and stress-management techniques. There is no cure for fibromyalgia, but treatment has been shown to improve the quality of life for those who have it.

Symptoms

Most kids with fibromyalgia complain of widespread muscle pain, usually a dull or burning kind, but sometimes more of a shooting or throbbing pain. Widespread means the pain happens on both sides of the body, above and below the waist; it can range from mild to severe.

Usually, someone with fibromyalgia also has a number of tender spots — places where he or she feels pain if the spot is pressed. Common tender spots include the back of the head, between the shoulder blades, shoulders, chest, neck, hips, knees, and elbows.

Fatigue (tiredness) is another common complaint of kids with fibromyalgia. Because of this, fibromyalgia can mimic the symptoms of a similar condition called chronic fatigue syndrome. Sometimes, a person can have both conditions, but they are separate syndromes.

Fibromyalgia also usually causes sleeping problems that make getting a good night’s sleep difficult. Some kids may have other sleep disorders like restless legs syndrome and sleep apnea. Poor sleep can also lead to waking up with body aches and stiffness that may improve during the day, then get worse at night.

Additional symptoms of fibromyalgia can include:

• gastrointestinal problems like irritable bowel syndrome
• problems with memory or concentration
• headaches
• irritability
• anxiety
• depression

People with fibromyalgia often notice a variety of external factors that can make their symptoms worse, from emotional stress to cold, damp weather.

Causes

Doctors aren’t really sure what causes fibromyalgia, but most agree that the brains of people who have it sense pain differently. They might feel pain in response to things (like stress) that aren’t normally painful.

Some cases of fibromyalgia seem to be triggered by an event — like an infection or illness, physical injury, or emotional upset. Genetic factors also might play a role. Fibromyalgia tends to run in families, so it’s possible that having a genetic mutation may increase someone’s risk of developing the condition.

Diagnosis

If your child seems to be suffering from one or more of fibromyalgia’s major symptoms — such as chronic muscle pain, fatigue, or disrupted sleep — contact a doctor. While there’s no specific test to diagnose fibromyalgia, a doctor can run tests to rule out other possible causes, such as thyroid disorders, infectious diseases, or rheumatic diseases (like juvenile idiopathic arthritis).

Since fibromyalgia can’t be confirmed by any laboratory tests and has few, if any, visible signs, it can be difficult for doctors to diagnose the condition. This can be frustrating for someone who has it. Some estimates claim that it takes an average of 5 years for someone with fibromyalgia to get an accurate diagnosis, and some doctors are not as familiar with the condition as others.

Doctors diagnose fibromyalgia in someone based on medical history, the person’s description of symptoms, and a physical exam, including a check of 18 usual tender spots. Most kids with fibromyalgia will have pain when pressure is applied to at least five of the tender spots, and will have widespread musculoskeletal aches lasting for at least 3 months, with no other medical problem causing the pain.

Treatment

There’s no cure for fibromyalgia, but treatment can help manage symptoms, ease pain, and improve a child’s overall health and quality of life. Treatments for fibromyalgia include both lifestyle changes, behavioral therapy, and medicines.

Before giving medicines, doctors usually will try other treatments, such as:

• Regular exercise. This may increase pain at first, but exercise can help ease symptoms when done gradually and regularly. Some kids benefit from working with a physical therapist. Others can show improvement from stretching and relaxation exercises.
• Stress-relief methods. This can include yoga, t’ai chi, and other disciplines, as well as light massage, breathing exercises, and acupuncture.
• Proper sleep. Getting enough sleep is one of the most effective ways to treat fibromyalgia, so children with fibromyalgia should be encouraged to avoid caffeine and sugary beverages and snacks right before bedtime. They also should go to bed and get up at the same time each day and limit napping during the daytime.
• Healthy lifestyle choices. This includes eating a healthy diet and finding activities that help distract from the symptoms of fibromyalgia.

Some kids also find that changing the way they think about their condition helps improve their symptoms. Cognitive-behavioral therapy (CBT), a therapy used by mental health professionals, can help kids learn to filter out negative thoughts, recognize what makes symptoms worse, and set limits to keep symptoms in check.

If these steps aren’t enough to manage fibromyalgia symptoms, the doctor may prescribe medications. Some of the more common ones prescribed to treat fibromyalgia are:

• Pain relievers. Over-the-counter medicines, such as acetaminophen, ibuprofen, and naproxen sodium, can help ease the pain and stiffness caused by fibromyalgia. Doctors also may use prescription pain relievers, such as tramadol.
• Antidepressants. A number of prescription antidepressants are used to ease pain and fatigue and help promote better sleep.
• Anti-seizure medications. A handful of drugs used to treat epilepsy are also useful in treating fibromyalgia symptoms.

In addition to helping your child manage the symptoms of fibromyalgia, it’s also important to provide the necessary emotional support. Talking about the condition and coming up with coping strategies together can help.

Many young people also find that support groups, as well as counseling from a trained psychologist, can help them learn to manage their symptoms, feel better, and have a more positive outlook on life.

At first, Tyler developed red patches and raised spots that turned purple and looked like bruises all over his legs and buttocks. Then he complained that his stomach and knees hurt. When his parents took him to the doctor to find out what was wrong, the doctor said that Tyler had the classic signs of Henoch-Schönlein purpura.

About Henoch-Schönlein Purpura

Henoch-Schönlein purpura (HEH-nok SHOON-line PURR-puh-ruh) — usually just called HSP — is a condition that causes small blood vessels to become swollen and irritated. This inflammation, called vasculitis, usually occurs in the skin, intestines, and kidneys. Inflamed blood vessels in the skin can leak blood cells, causing a rash called purpura. Vessels in the intestines and kidneys also can swell and leak.

The condition was named after two German doctors, Eduard Henoch and Johann Schönlein, who first described the disease in the 1800s. Sometimes it’s also called allergic purpura, anaphylactoid purpura, or IgA vasculitis.

HSP occurs much more often in kids than in adults, usually between ages 3 and 10. It is one of the most common forms of vasculitis in children, and boys get it about twice as often as girls.

Causes

Although no one really knows what causes HSP, doctors do know that it occurs when the body’s immune system doesn’t function as it should. A protein called immunoglobulin A (IgA) is a type of antibody that works to fight infections. In HSP, IgA also gets placed in the blood vessels and causes swelling and bleeding.

It is unclear why this immune reaction occurs. It often happens after a bacterial or viral infection of the upper respiratory tract (sinuses, throat, or lungs). It is seen more often in fall, winter, and spring. Although less common, other possible triggers include certain medicines, food reactions, insect bites, and vaccinations.

HSP cannot be passed from one person to another.

Signs and Symptoms

Common signs and symptoms of HSP include:

• purpura, a raised, reddish purple rash
• joint pain and swelling
• stomach pain
• blood in the urine (pee) or other kidney problems
• fever
• headache

The rash occurs in all cases and is what helps doctors diagnose HSP. It may take the form of purpura, pinpoint red dots called petechiae, bruises, or sometimes blisters. The rash usually occurs on the legs and buttocks, but can also appear on other parts of the body, such as the elbows, arms, face, and trunk.

Most kids with HSP also have joint pain and swelling. These symptoms can happen before the rash appears. HSP most commonly affects the ankles and knees, but other joints like the hands, elbows, and feet may be affected.

Stomach pain usually starts a week after the rash appears. Pain may come and go and can be accompanied by nausea, vomiting, or diarrhea. Some kids will have blood in the stool (caused by leaky blood vessels), but it may not be visible.

HSP can affect the kidneys in some cases. Small amounts of blood or protein might be found in the urine, and the urine may look bloody.

Diagnosis

When the characteristic rash on the legs and buttocks is present, especially if accompanied by abdominal or joint pain, doctors can easily diagnose HSP. A diagnosis may be more difficult if joint pain or abdominal symptoms are present before the rash appears, or if symptoms take several weeks to show up.

The doctor also may request routine blood tests to look for signs of infections, anemia, or kidney disease. If abdominal pain is severe, imaging tests (like X-rays or ultrasound) may be needed. A stool sample can check for blood in the stool (poop). A urine sample can reveal blood or protein in the urine.

Up to half of kids who develop HSP will have problems with their kidneys, so the doctor will probably check kidney function over several months. If the doctor suspects that HSP has caused kidney damage, your child may need to see a kidney doctor (nephrologist).

Treatment

Symptoms of HSP usually last for about a month. Most of the time, it goes away on its own without treatment. To help your child feel better, the doctor may recommend certain medications, such as:

• antibiotics, if an infection is causing the HSP
• painkillers (such as acetaminophen)
• anti-inflammatory medicines (such as ibuprofen) to relieve joint pain and inflammation
• corticosteroids (such as prednisone) for severe abdominal pain or severe kidney disease

Also, the doctor may tell you to stop giving your child certain medications if there’s a chance that they caused the HSP.

While at home, try to keep your child as comfortable as possible. Be sure your child gets plenty of rest and drinks fluids. If your child stops eating or drinking, or develops severe abdominal pain or kidney problems, hospitalization might be necessary.

What to Expect

Most children with HSP fully recover within a month and have no long-term problems. Kids whose kidneys are affected will need to see a doctor for regular checkups to monitor kidney function.

About one-third of those who have HSP get it again, usually a few months after the first episode. If HSP does come back, it’s usually less severe than the initial episode.

Jumper’s knee — also known as patellar tendonitis or patellar tendinopathy — is an inflammation or injury of the patellar tendon, the cord-like tissue that joins the patella (kneecap) to the tibia (shin bone). Jumper’s knee is an overuse injury (when repeated movements cause tissue damage or irritation to a particular area of the body).

Constant jumping, landing, and changing direction can cause strains, tears, and damage to the patellar tendon. So kids who regularly play sports that involve a lot of repetitive jumping — like track and field (particularly high-jumping), basketball, volleyball, gymnastics, running, and soccer — can put a lot of strain on their knees.

Jumper’s knee can seem like a minor injury that isn’t really that serious. Because of this, many athletes keep training and competing and tend to ignore the injury or attempt to treat it themselves. But it’s important to know that jumper’s knee is a serious condition that can get worse over time and ultimately require surgery. Early medical attention and treatment can help prevent continued damage to the knee.

How the Knee Works

To understand how jumper’s knee happens, it helps to understand how the knee works. The knee, which is the largest joint in the body, provides stability to the leg and allows it to bend, swivel, and straighten. Several parts of the body interact to allow the knee to function properly:

• Bones like the femur (thighbone), the tibia (shinbone), and the patella (kneecap) give the knee the strength needed to support the weight of the body. The bones that meet at the knee allow it to bend smoothly.
• Muscles provide the tug on the bones needed to bend, straighten, and support joints. The muscles around the knee include the quadriceps (at the front of the thigh) and the hamstring (on the back of the thigh). The quadriceps muscle helps straighten and extend the leg, and the hamstring helps bend the knee.
• Tendons are strong bands of tissue that connect muscles to bones. The tendons in the front of the knee are the quadriceps tendon and the patellar tendon. The quadriceps tendon connects to the top of the patella and allows the leg to extend. The patellar tendon connects to the bottom of the kneecap and attaches to the top of the tibia.
• Similar to tendons, ligaments are strong bands of tissue that connect bones to other bones.

By working together, bones, muscles, tendons, and ligaments enable the knee to move, bend, straighten, provide strength to jump, and stabilize the leg for landing.

About Jumper’s Knee

When the knee is extended, the quadriceps muscle pulls on the quadriceps tendon, which in turn pulls on the patella. Then, the patella pulls on the patellar tendon and the tibia and allows the knee to straighten. In contrast, when bending the knee, the hamstring muscle pulls on the tibia, which causes the knee to flex.

In jumper’s knee, the patellar tendon is damaged. Since this tendon is crucial to straightening the knee, damage to it causes the patella to lose any support or anchoring. This causes pain and weakness in the knee, and leads to difficulty in straightening the leg.

Symptoms

Common symptoms of jumper’s knee include:

• pain directly over the patellar tendon (or more specifically, below the kneecap)
• stiffness of the knee, particularly while jumping, kneeling, squatting, sitting, or climbing stairs
• pain when bending the knee
• pain in the quadriceps muscle
• leg or calf weakness

Less common symptoms include:

• balance problems
• warmth, tenderness, or swelling around the lower knee

Treatment

Jumper’s knee is first evaluated by a grading system that measures the extent of the injury (grades range from 1 to 5, with grade 1 being pain only after intense activity and grade 5 being daily constant pain and the inability to participate in any sporting activities).

While examining the knee, a doctor or medical professional will ask the patient to run, jump, kneel, or squat to determine the level of pain. In addition, an X-ray or MRI might be recommended. Depending on the grade of the injury, treatment can range from rest and icepacks to surgery.

For mild to moderate jumper’s knee, treatment includes:

• resting from activity or adapting a training regimen that greatly reduces any jumping or impact
• icing the knee to reduce pain and inflammation
• wearing a knee support or strap (called an intrapatellar strap or a Chopat strap) to help support the knee and patella. The strap is worn over the patellar tendon, just beneath the kneecap. A knee support or strap can help minimize pain and relieve strain on the patellar tendon.
• elevating the knee when it hurts (for example, placing a pillow under the leg)
• anti-inflammatory medications, like ibuprofen, to minimize pain and swelling
• massage therapy
• minimum-impact exercises to help strengthen the knee
• rehabilitation programs that include muscle strengthening, concentrating on weight-bearing muscle groups like the quadriceps and calf muscles
• specialized injections to desensitize nerve endings and reduce inflammation

On rare occasions, such as when there’s persistent pain or the patellar tendon is seriously damaged, jumper’s knee requires surgery. Surgery includes removing the damaged portion of the patellar tendon, removing inflammatory tissue from the lower area (or bottom pole) of the patella, or making small cuts on the sides of the patellar tendon to relieve pressure from the middle area.

After surgery, a rehabilitation program involving strengthening exercises and massage is followed for several months to a year.

Recovery

Recovering from jumper’s knee can take a few weeks to several months. It’s best to stay away from any sport or activity that can aggravate the knee and make conditions worse.

However, recovering from jumper’s knee doesn’t mean that someone can’t participate in any sports or activities. Depending on the extent of the injury, low-impact sports or activities can be substituted (for instance, substituting swimming for running). Your doctor will let you know what sports and activities are off-limits during the healing process.

Preventing Jumper’s Knee

The most important factor in preventing jumper’s knee is stretching. A good warm-up regimen that involves stretching the quadriceps, hamstring, and calf muscles can help prevent jumper’s knee. It’s always a good idea to stretch after exercising, too.

It may begin with a swollen knuckle, a spiking fever, or an unexplained rash. But no matter what symptoms appear, hearing the word “arthritis” in a diagnosis for your child can be unexpected and confusing.

Arthritis is an inflammation of the joints, meaning that the joints get swollen, warm, and painful. Nearly 300,000 children in the United States have some sort of arthritis. Arthritis can be short-term — lasting for just a few weeks or months, then going away forever — or it can be chronic and last for months or years. In about half of cases, it can last a lifetime.

The most prevalent form of juvenile arthritis is juvenile idiopathic arthritis (JIA) (also known as juvenile rheumatoid arthritis, or JRA). It is very different from adult rheumatoid arthritis.

What Causes JIA?

It’s not known exactly what causes JIA in kids. Research indicates that it is an autoimmune disease. In autoimmune diseases, white blood cells can’t tell the difference between the body’s own healthy cells and germs like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain.

To effectively manage and minimize the effects of arthritis, an early and accurate diagnosis is essential. By understanding the symptoms and characteristics of each type of JIA, you can help your child maintain an active, productive lifestyle.

Types of JIA

JIA usually appears in kids between 6 months and 16 years old. The first signs often are joint pain or swelling or warm joints. Many rheumatologists (doctors specializing in joint disorders) find that the greater the number of joints affected, the more severe the disease and the less likely that the symptoms will eventually go into total remission. Remission is a medical term for temporary or permanent recovery.

There are seven types of JIA:

1. Systemic JIA. Affects the whole body. Symptoms include high fevers that often increase in the evenings and then may suddenly drop to normal. During the onset of fever, the child may feel very ill, appear pale, or develop a rash. The rash may suddenly disappear and then quickly appear again. The spleen and lymph nodes might become enlarged. Eventually many of the body’s joints are affected by swelling, pain, and stiffness. Rashes may suddenly appear and disappear, developing in one area and then another. High fevers that tend to increase in the evenings and disappear are characteristic of systemic JIA
2. Oligoarthritis. Affects four or fewer joints, often the knee or ankle. Symptoms include pain, stiffness, or swelling in the joints. The two types of oligoarthritis, persistent and extended, are determined by how many joints are ultimately involved.
3. Polyarticular arthritis, rheumatoid factor negative. About 1 in 4 kids and teens with JIA have polyarthritis, which affects more girls than boys. Symptoms include swelling or pain in five or more joints. The small joints of the hands are affected as well as the weight-bearing joints like the knees, hips, ankles, feet, and neck. A low-grade fever also might develop, as well as bumps or nodules in areas of the body subjected to pressure from sitting or leaning.
4. Polyarticular arthritis, rheumatoid factor positive. This type of JIA behaves the most like adult rheumatoid arthritis, and kids who have it have a protein called rheumatoid factor (RF) or anti-cyclic citrullinated peptide (CCP antibody) in their blood. Kids with polarticular JIA are at a higher risk of joint damage with erosions than in the other forms of JIA.
5. Psoriatic arthritis. Kids with this also have the psoriasis rash (a scaly red rash that can start behind the ears, on the eyelids, elbows, knees, or scalp) themselves or a close relative with psoriasis. Their fingernails and toenails might be affected by the condition.
6. Enthesitis-related arthritis. This type of arthritis often affects the legs and spine. Kids also might have inflammation at the entheses – areas where tendons join bones (where the Achilles tendon attaches to the back of the heel). Enthesitis-related arthritis includes a special group call juvenile ankylosing spondylitis (where joints of the low back are inflamed) and arthritis associated with inflammatory bowel disease (Crohn’s disease and ulcerative colitis).
7. Undifferentiated arthritis. Arthritis that doesn’t fit into any of the above categories or fits into more than one of the categories.

The first signs of arthritis, which can be subtle or obvious, include limping or a sore wrist, finger, or knee. Joints may suddenly swell and remain enlarged. Stiffness in the neck, hips, or other joints also can occur.

Inflammation of the iris (the colored area of the eye) may happen with or without active joint symptoms in any type of JIA. This inflammation, more likely to happen in girls than boys, is called iridocyclitis, iritis, or uveitis. Kids and teens with JIA should see an ophthalmologist (an eye doctor) regularly to check for this.

Diagnosis

To diagnose JIA, the doctor will take ask you questions about your child’s symptoms, find out whether other family members have had similar problems, and do a thorough physical examination. The doctor may order X-rays or blood tests to rule out other conditions or infections, such as Lyme disease, that may cause similar symptoms or occur along with the arthritis.

Other tests may include:

• CBC (complete blood count), a common blood test that checks all the basic cell types in blood, including red blood cells, white blood cells, and platelets. Knowing the amount and appearance of each cell type in a person’s blood can help doctors identify many medical conditions.
• Blood culture, a test to detect bacteria that cause infections in the bloodstream.
• Bone marrow biopsy, a test that allows doctors to look at blood where it’s formed (in the bone marrow) to look for conditions such as leukemia.
• Erythrocyte sedimentation rate, which checks how rapidly red blood cells settle to the bottom of a test tube. This rate often increases in people when inflammation is occurring in the body.
• C-reactive protein (CRP) is a protein that the liver releases into the blood at the start of infection or inflammation; this level can rise if a person is having an arthritis flare-up.
• A test for rheumatoid factor (RF) and cyclic citrullinated peptide antibody (CCP), substances made in the blood of children with some forms of JIA. But it’s found more often in adults with rheumatoid arthritis.
• ANA (antinuclear antibody), a blood test to detect autoimmune diseases. It’s also useful in predicting which kids are likely to have eye disease with JIA.
• X-rays of the affected joints, and sometimes an MRI, to detect changes in bone and joints to evaluate the causes of unexplained bone and joint pain. In some cases, doctors may do a test called a bone scan.

In some cases, the doctor may want an orthopedic surgeon to examine your child’s joints and take samples of joint fluid or synovium (the lining of the joints) for examination and testing.

Treatments

In many cases, JIA is treated with a combination of medication, physical therapy, and exercise. In some cases, a child may require corticosteroid injections into the joint. In very rare cases, kids and teens may need surgery. The health care providers, including the primary care physician, rheumatologist, and physical therapist, will work together to develop the best method of treatment.

The goals of treatment are to relieve pain and inflammation, slow down or prevent the destruction of joints, and restore use and function of the joints to promote optimal growth, physical activity, and social and emotional development.

Medications

For inflammation and pain, the doctor or pediatric rheumatologist may prescribe nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen, such as Advil, Motrin, or naproxen (Naprosyn or Aleve). These can help reduce inflammation and pain by limiting the release of harmful chemicals from white blood cells.

Higher or lower dosages might be needed, depending upon your child’s response to the medication. The doctor or rheumatologist should explain what the medication is meant to do and what side effects, if any, it could cause. It’s important for your child to continue taking the medication until the doctor says to stop.

Doctors sometimes prescribe corticosteroids (like prednisone) for arthritis flares, but they try to keep these to a minimum to reduce problems that can come with prolonged steroid use, such as skin changes, weight gain, abnormal blood pressure, diabetes, and bone mass changes.

If NSAIDs don’t control joint inflammation, your doctor may prescribe other medications such as methotrexate. In addition, treatment options now include a newer class of medications called biologics. The U.S. Food and Drug Administration (FDA) has approved many of these medicines for kids and teens with JIA. Some are subcutaneous injections (injections given just under the skin) that can be done at home. Others are intravenous (IV) infusions through a vein that are done regularly at the hospital.

Physical Therapy

An appropriate physical therapy program is essential to the management of any type of arthritis. A physical therapist will explain the importance of certain activities and recommend exercises suited to your child’s specific condition. The therapist may recommend range-of-motion exercises to restore flexibility in stiff, sore joints and other exercises to help build strength and endurance.

Regular Exercise

When pain strikes, it’s natural for your child to want to sit still. But it’s important to maintain a regular exercise program. Muscles must be kept strong and healthy so they can help support and protect joints. Regular exercise also helps to maintain range of motion.

At home and at school, your child should have regular exercise and physical fitness programs. Safe activities include walking, swimming, and bicycling (especially on indoor stationary bikes). Be sure that your child warms up the muscles through stretching before exercising. Make exercise a family activity to build fun and enthusiasm.

Ask the doctor and physical therapist about sports restrictions. Some, especially impact sports, can be hazardous to weakened joints and bones. And make sure your child eats a balanced diet that includes plenty of calcium to promote bone health.

Lupus is an autoimmune disease that causes the immune system to mistakenly work against the body’s own tissues. It can be hard to diagnose because it can affect almost any organ in the body, and its symptoms — including joint pain, fatigue, muscle pain, rash, mouth ulcers, and hair loss — vary widely from patient to patient. That is one of the greatest challenges of treating the disease for both doctors and their patients.

About Lupus

A healthy immune system produces proteins called antibodies that normally protect the body against bacteria and viruses that cause infections. But when someone has lupus, the immune system can’t tell the difference between the body’s healthy cells and bacteria and viruses, so the antibodies attack the body’s healthy cells.

Lupus affects 1.5 million people in the United States, including an estimated 10,000 children. Nearly 90% of adults diagnosed with lupus are female, although the male to female ratio is much less different for kids and teens.

What Causes Lupus?

Although the cause of lupus is unknown, researchers think that many factors may trigger the disease.

Genetics might play a role. Some people may have a genetic predisposition to lupus that is then activated by an infection, certain medications, or extreme physical or emotional stress. The hormone estrogen also may play a role and could help explain why it’s more common in females than males.

Lupus also happens more often in African Americans, Asian Americans, Latinos, and Native Americans than in caucasians.

Types of Lupus

The three main types of lupus are:

1. Systemic lupus erythematosus, or SLE, which can affect multiple organs in the body and is the most common form of the disease. Although SLE typically develops in people in their twenties, thirties, or forties, some people first notice symptoms during childhood or adolescence (after age 10).

   SLE can be difficult to diagnose because no two patients will have an identical set of complaints, and the symptoms can sometimes be mistaken for those of other conditions, like juvenile idiopathic arthritis, Crohn’s disease, Lyme disease, and mononucleosis.

2. Cutaneous (or skin) lupus, which usually affects only the skin and is characterized by a rash on the scalp, legs, or arms. The rash has sharply defined patches and can be raised from the skin.

   There are two types of cutaneous lupus: discoid lupus erythematosus (DLE), which can cause scarring; and subacute cutaneous lupus erythematosus (SCLE), which doesn’t cause scars. Discoid lupus affects approximately 15% of all lupus patients, but is rare in children. Occasionally, discoid lupus occurs with systemic lupus.

3. Drug-induced lupus, which accounts for about 10% of all lupus cases, occurs as a reaction to specific kinds of medications. In kids, anti-seizure medications, thyroid medications, and acne medications can cause lupus. The symptoms are similar to those of the systemic form, but are usually milder and go away after the medication is stopped.

Diagnosing Lupus

The two rashes commonly associated with lupus are:

1. malar rash — a rash across the cheeks and the bridge of the nose (also called a “butterfly” rash because it is shaped like a butterfly)
2. discoid rash — circular, red or hyperpigmented raised patches of skin that often occur on the face, neck, or chest

Other common symptoms:

• sensitivity to ultraviolet light — either sunlight or, occasionally, certain types of fluorescent light (also called photosensitivity) — that results in a rash
• ulcers in the nose or mouth
• nonerosive arthritis (arthritis that does not destroy the bones around the joints)
• inflammation of the lining around the heart, abdomen, or lungs (called serositis)
• kidney problems, either mild (with no early symptoms) or severe (such as those that lead to swelling in the legs)
• neurological disorders, such as seizures or psychosis
• blood problems, such as a low red blood cell count (anemia), a low white blood cell count (leukopenia), or a low platelet count (thrombocytopenia)
• problems with the immune system
• positive blood test for antinuclear antibodies (ANA), specific proteins that are a hallmark of rheumatic or autoimmune disease. More than 95% of lupus patients have a positive ANA.

Someone with four or more of these signs or symptoms is likely to have SLE. Most patients don’t develop all of them. Before making a diagnosis, doctors perform a physical exam and take blood tests to rule out any other diseases.

In addition to those symptoms, patients with lupus often have fever, weakness, fatigue, or weight loss. They may experience muscle aches, loss of appetite, swollen glands, hair loss, or abdominal pain, which can be accompanied by nausea, diarrhea, and vomiting.

Sometimes the fingers, toes, nose, or ears will be particularly sensitive to cold and will turn blue and white in cold temperatures, a condition known as Raynaud’s phenomenon.

Managing Lupus

There is no known cure for lupus, but the symptoms of the disease can be controlled. Often a patient with lupus has a health care team that includes specialists who can help treat the symptoms. That team may include:

• a rheumatologist (a doctor who specializes in conditions of the joints and connective tissues)
• a nephrologist (a doctor who specializes in kidney diseases)
• an advanced practice nurse
• a social worker
• other consulting doctors, like a dermatologist, psychologist, or infectious disease specialist

Part of managing lupus is preventing flares — times when the disease gets worse. During a flare-up, a person with lupus may feel much more tired, sick, feverish, and achy than usual. Almost all lupus patients take medication to control inflammation and reduce the risk of flares.

Doctors often prescribe corticosteroids to control inflammation. These aren’t the same steroids some athletes take. If a doctor prescribes one of these medicines, the dosage and any side effects will be carefully monitored.

For day-to-day muscle and joint pain, patients can take acetaminophen or any of a variety of nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin, ibuprofen, or naproxen.

Almost all patients with lupus take antimalarial drugs (medicines first developed to prevent and treat malaria that also have proved helpful with lupus). Antimalarial drugs often help treat skin rashes and joint pain, and help prevent coronary artery disease and the involvement of other organ systems in lupus.

Some children who also have kidney disease, very low blood cell counts, or other organ involvement, may require more aggressive treatment with immunosuppressive drugs, which lower the body’s immune system responses.

In 2011, belimumab was approved by the U.S. Food and Drug Administration (FDA) for the treatment of lupus, especially for arthritis, rashes, and fatigue.

Making Lifestyle Changes

Though the course that lupus takes cannot be predicted, certain lifestyle changes may help minimize flare-ups. Patients should avoid too much sun exposure by wearing sunscreen and protective clothing when outside.

Regular exercise can help prevent fatigue and joint stiffness. A balanced diet and sufficient rest also are important for maintaining general health and well-being.

When to Call the Doctor

Kids and teens with lupus are prone to the usual childhood illnesses, such as a viral infection or diarrhea. However, a fever, rash, or mouth sore might indicate the beginning of a flare. As you and your child become more familiar with the disease, you may learn to recognize signs that a flare-up is around the corner.

Call the doctor immediately if any of these symptoms appear:

• bloody stools
• easy bruising (with or without nosebleeds)
• chest or abdominal pain
• seizures
• new or high fever

The Outlook for Lupus

The outlook for lupus patients is constantly improving. Over the past few decades, better tools to diagnose and treat lupus have remarkably improved the lives of those who live with the disease.