Friday, March 16, 2012
Learn About Lupus Treatment How to Ease the Symptoms of a Lupus Diagnosis
Body aches, joint pain, skin rash and fatigue are all common symptoms of a lupus diagnosis. But you shouldn’t suffer needlessly with the autoimmune disease, which mainly affects women. Lifescript’s Medical Detective describes the most effective lupus treatment for each obstacle you may face...
Pamela Chan first developed cold, blue fingers. Six years later came joint pain.
By her freshman year of college, weight loss, crushing fatigue, swollen wrists, mouth sores and painful lung inflammation descended.
She didn’t know what hit her.
“I was so tired and sick that half the time I couldn’t go to classes,” says Chan, now 37 and a scientific manager at a large biotechnology firm in south San Francisco. “It was devastating.”
A telltale butterfly-shaped rash on Chan’s face finally provided the “a-ha” symptom for a long-sought diagnosis.
She had systemic lupus erythematosus – a chronic autoimmune disease that wreaks havoc on patients’ skin, joints and sometimes their internal organs.
Lupus affects about 1.5 million Americans, according to the Lupus Foundation of America, a nonprofit organization that offers education and support. For reasons not entirely understood, 9 of 10 lupus patients are women, according to the Centers for Disease Control and Prevention.
The symptoms – which also include depression, anxiety and memory loss – may last weeks or years, and can flare and subside over time.
“Lupus is hard to diagnose and can be confusing, even for a rheumatologist,” says Gary Bryant, M.D., a rheumatologist and associate professor of medicine at the University of Minnesota Medical School. “It’s a complex illness.”
Fortunately, proper treatment can help relieve many symptoms and improve a patient’s quality of life.
Lifescript’s Medical Detective reveals the five most serious effects of lupus, along with expert advice on dealing with each one…
Lupus impact #1: Pain and inflammation
At least 90% of lupus patients experience joint and muscle pain, according to the Lupus Foundation. When lupus flares, painful inflammation often occurs throughout the body. The discomfort may prevent work and social activities, causing depression and isolation.
Most patients experience red, warm and swollen joints, which are often are the first sign of the condition, according to rheumatologists.
Arthritis pain often shows up on both sides of the body simultaneously and usually affects the small hand, knee, elbow and ankle joints.
“The pain can be overwhelming,” says Louise Bergeron, president of the Canadian Arthritis Patient Alliance, a grassroots support and advocacy group. “How can you work, play, take a bus or do any daily routines when every movement can be excruciating?”
Lupus treatment: Physical therapy and exercise can help, and a number of drugs are available to combat joint and overall body pain. Beware possible side effects, though.
Non-steroidal anti-inflammatory drugs (NSAIDs): Over-the-counter Ibuprofen (Advil) and naproxen (Aleve) may help calm joint pain, fevers and lung inflammation. Celecoxib (Celebrex) is available by prescription.
NSAID side effects include stomach irritation and, with long-term use, possibly a bleeding ulcer.
Corticosteroids: These synthetic drugs work like naturally occurring hormones, according to the Lupus Foundation. They reduce inflammation and pain by decreasing the body’s immune-system response.
Most rheumatologists prescribe low levels of oral steroids to lupus patients, then taper them off when symptoms decrease. Side effects may include acne, weight gain, hair growth, fluid retention, irritability, agitation, insomnia and depression. Long-term steroid use also may increase the risk of infection and bone destruction.
Immunosuppressives (immune modulators): These oral drugs control overactive immune systems and reduce inflammation; they’re primarily used when steroids are ineffective. Patients must be closely monitored because the meds reduce the body’s ability to fight infections such as shingles. The drugs also increase the risk of developing cancer, according to the Lupus Foundation.
Methotrexate (Rheumatrex) is considered the premium immunosuppressive for fighting rheumatoid arthritis. It’s also prescribed for lupus arthritis, which “looks like RA and can be as severe,” Bryant says.
Lupus patients taking methotrexate (either orally or through injection) must be monitored for sun sensitivity, liver damage and lung infections.
“Doctors will ask for lab tests on a regular basis,” says lupus researcher Sasha Bernatsky, M.D., Ph.D., a rheumatologist and assistant professor in the Department of Medicine at McGill University in Montreal.
Lupus Impact #2: Fatigue
Fatigue is “part and parcel of most inflammatory diseases, but especially lupus,” Bryant says. “Even if doctors can help control organ and skin problems, there are elements of fatigue we can’t control.”
Rheumatologists aren’t sure why this is. One possible reason is that lupus often causes interrupted sleep, mainly from pain, Bernatsky says. Lack of exercise due to joint pain may also cause fatigue. Some lupus patients also have undiagnosed thyroid disease and anemia, contributing to energy loss, she adds.
The net result is lack of energy and depression.
Lupus treatment: While there aren’t drugs that specifically treat fatigue, there are steps you can take to help, rheumatologists say.
Maintain a healthy diet, which may provide more energy.
Exercise, even when it’s difficult. Swimming, yoga and even short walks boost your energy and mood.
Tricyclic antidepressants can sometimes help patients sleep, Bernatsky says. They include Amitriptyline, imipramine (Tofranil) and clomipramine (Anafranil). Side effects include blurred vision, drowsiness, weight gain and blood pressure changes.
“Conserve energy and focus on the most important things you want to accomplish,” Bernatsky suggests. For example, “don’t feel guilty about missing a party if it’s better for your health to stay home.”
Lupus Impact #3: Rashes
About two-thirds of lupus patients develop skin disease, according to the Lupus Foundation. They often appear as rashes or sores on the face, ears, neck, arms and legs. The discomfort and unsightly appearance keep many sufferers indoors, causing further depression and isolation.
Rashes called discoid lesions are red and scaly but don’t itch. They can produce scarring and cause hair loss.
“My hair was falling out, big-time,” says New Jersey teacher Lauren Post, 29, about the onset of her disease five years ago. “My first doctor brushed it off – she told me to stop washing my hair daily and told me not to highlight my hair.”
After Post was diagnosed with lupus, she was given medications that helped.
Also common are lesions that form a sun-sensitive red face rash that spreads across the cheeks and bridge of the nose, known as a “butterfly rash.”
“Skin rashes can affect your self-esteem, broadcasting to the world that you’re unwell,” Bergeron says. “They also can be painful.”
Lupus treatment: First and foremost, stay out of the sun doctors say. Wear sunscreen and long sleeves year-round.
Medications can also help:
Topical creams such as Tacrolimus ointment (Protopic) – an immunosuppressant that eases inflammation – are useful, Berntasky says. It’s important to seek the advice of a dermatologist to help find the right combination of skin treatments, she adds.
Corticosteriods often are used for mild to moderate lupus skin rashes.
Antimalarial drugs hydroxychloroquine (Plaquenil) and chloroquine (Aralen) help reduce the use of steroids and other drugs, and limit mouth ulcers and joint pain, according to Bernatsky. They also decrease autoantibody production and protect from the damaging effects of ultraviolet light, such as skin lesions. Side effects may include an upset stomach and temporary changes in skin color.
Patients with severe lupus (and who aren’t at risk of becoming pregnant) may use thalidomide (Thalomid), a drug prescribed to pregnant women in the late 1950s to prevent nausea but later removed from the market because it caused birth defects. Methotrexate also is prescribed for severe lupus skin disease.
Lupus Impact #4: Depression, stress and anxiety
Because lupus patients face a variety of hurdles, from pain to frequent doctor’s visits, they often experience depression and emotional stress, Bernatsky says. Medications, especially steroids, also may affect patients’ moods.
“Stress and anxiety can also be caused by family tensions [due to] their symptoms and [the fear that they’re] not fulfilling their roles as spouse and parent,” Bernatsky says.
Patients also often complain of memory loss, concentration problems and confusion, which doctors refer to as “lupus fog.”
Lupus treatment:
Even if you’re in pain, try to squeeze in some exercise. It builds muscle strength, supports bone health and helps the body produce feel-good chemicals known as endorphins, Bryant says.
Seek support from family, friends and a mental health professional.
Join a lupus support group.
Try stress-reduction techniques such as meditation or biofeedback.
Remember to have fun – don’t give up on activities you enjoy.
Lupus Impact #5: Childbearing issues
Lupus often is diagnosed just when women hit childbearing age, creating extreme anxiety among those who want to become pregnant, doctors say.
About half of lupus pregnancies end before full gestation (40 weeks). But patients in remission enjoy more carefree pregnancies and typically have better outcomes.
About one-third of lupus patients have an antibody called anti-Ro, and 10% of those women have babies with “neonatal lupus,” according to the Lupus Foundation. Infants may experience a short-term rash and transient blood count and heart-rate abnormalities. But those children typically don’t develop systemic lupus erythematosus.
About 20% of pregnant women with lupus experience a sudden spike in blood pressure, protein in the urine, or both. This serious condition requires urgent attention and sometimes an immediate delivery.
Many lupus medications are too strong to ensure a fetus’ safety. The steroid prednisone may be allowed during pregnancy, but most others aren’t, according to the Lupus Foundation.
Should lupus patients avoid pregnancy?
“Today we rarely say, ‘Don’t get pregnant,’” Bernatsky says. “But it’s best to plan a pregnancy when lupus is under control and the woman doesn’t have to take drugs.”
Lauren Post’s doctor strongly urged her to get pregnant as young as possible, when her symptoms were in remission. She has a son and currently is pregnant.
“I get frequent blood work and see a pediatric cardiologist every week,” Post says. “It’s scary, but my doctors stay on top of my condition.”
Lupus treatment:
Try to get your lupus under control before conceiving.
Once pregnant, see your doctor often.
Review all medications with your doctor. Some must be halted months before you conceive.
Pregnant lupus patients should see a high-risk obstetrician – a specialists who knows which tests to administer and can monitor the health of the mother and fetus, Bernatsky says.
Despite the challenges the condition creates, “There is life after lupus,” says Pamela Chan. “I discovered what’s important to me. [Now] I always make time for those activities.”
How Much Do You Know About Lupus Treatment and Symptoms?
Roughly 1.5 million Americans are afflicted with lupus. A diagnosis can be difficult, because the symptoms are sometimes intermittent and changing. But recent improvements in lupus treatment have made the condition somewhat easier to control.
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