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Alison Reuse, shown with her daughter, Krista, is thankful she’s now able to do household tasks such as cooking.
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“When you have to get up and get going every day, you just do,"Alison Reuse says.
Alison Reuse realized something was wrong when her arm muscles and joints became so sore that she had trouble holding her 3-month-old daughter, Krista.
That symptom, 20 years ago, began her journey with lupus, an illness with unpredictable flare-ups that have affected her ability to walk, move her hands and even breathe.
An autoimmune disease, lupus occurs when an individual's antibodies, which multiply to fight infection or microorganisms, go into overdrive and are misdirected to healthy body parts. The result is inflammation and potential organ damage.
Initially, doctors diagnosed Reuse's ailment as arthritis, says the Midlothian resident, now 47. "I went to a rheumatologist and tried a whole bunch of nonsteroidal drugs and found one that worked awhile and things were pretty smooth again."
Reuse's son, Ethan, was born four years after Krista. During that pregnancy, a rash appeared all over her body, even on her palms, she says. A biopsy of her rash-affected skin provided the definitive diagnosis of lupus.
In the 10 years after Ethan's birth, Reuse had just the occasional day when she felt really sore and had to take life more slowly. Her medication, an anti-malaria drug, calmed the joint swelling and aches.
Then she entered her 40s. "Ooh, that's when things got bad," says the slender speech and language pathologist for Chesterfield County Public Schools.
"Early on, my symptoms were more joint, swelling and skin-related," Reuse says. The more serious ailments have occurred in the past six years.
In 2004, she began experiencing clotting in her leg, known as antiphospholipid syndrome or APS. The blood flow was so constricted that Reuse hobbled around for months, wondering why her leg felt like it was asleep all the time. Three stents and blood-thinning drugs restored the flow.
A year later, after a two-week vacation, she wound up in the emergency room with trouble breathing caused by inflammation of the lining of her heart. Steroids eased her symptoms.
A bout with pneumonia in 2006 led to dehydration. That closed the stents in her leg, and they had to be reopened. "But I had a very nice stay at St. Francis [Medical Center], right when they were just newly opened. I was the only patient in the ICU for four days, so I had wonderful treatment over there," she jokes.
Reuse's trips to the hospital "happened so frequently, I guess it didn't faze us," daughter Krista says of herself and her brother. A rising junior at Longwood University, Krista has no signs of the disease, although her roommate has the chronic autoimmune disease Sjögren's syndrome, which has a lot of similarities to lupus.
The flare-ups subsided for two years. Then, in December 2008, came the latest attack, "which was the weirdest one yet," Reuse says. It caused swelling that affected her hands. "The tendons in my fingers stopped working correctly so my hands were, like, stuck. If I wanted to write, I had to push my fingers open." Overall muscle stiffness, pain and a feeling that something in her body was "off" accompanied the hand problems.
Coincidentally, that flare-up started the day she switched doctors and began seeing Dr. Beth K. Rubinstein, a rheumatologist at VCU Medical Center. They set about finding medications that would address Reuse's incapacitating inflammation. Eventually, they came to the last rung on the ladder of possible medications – an anti-rejection drug designed for transplant recipients that takes three to four months to kick in. For immediate relief, Rubinstein prescribed massive doses of prednisone, a steroid.
"Three or four months later, I had no muscle tone," says Reuse, who is unsure whether the new symptom came from the lupus or the prednisone, which was slowly tapered down once the anti-rejection drug took effect. She began hand therapy to help get her fingers working again. "I couldn't type for a while — and of course it happened right in the middle of my report-writing season at school. You can't do much if you don't have any strength in your fingers."
Then, walking down a school hallway one day, she heard her Achilles tendon pop. Surgery, often the best treatment to repair a torn Achilles tendon, was not an option because operations can cause flare-ups in patients with autoimmune diseases. Instead, Reuse wore a boot to nurse the tendon and underwent physical therapy to restore overall muscle strength that she lost during the flare-up.
Krista, who has ambitions of becoming an occupational therapist, was frustrated that she couldn't be home all the time to help her mother. But she says her roommate, Colleen Festa, "was probably more sympathetic than most of my friends because she knows exactly what it feels like and the changes my mother was going through."
Sitting in the den of her home, Reuse says, "I feel the best I have in the past five years." But she adds, "Now I'm just waiting and wondering, ‘What's next year going to bring?' "
Not Easy to Diagnose or Treat
Lupus generally refers to Systemic Lupus Erythematosus, or SLE. Symptoms can affect any organ: the skin, joints, mucus membranes, blood vessels, lungs, gastrointestinal system, kidneys, heart or brain. The disease isn't always easy to diagnose or to treat. Symptoms run the gamut, and their severity can vary widely, medical experts say.
"I have had every symptom listed under the Symptoms of Lupus heading" on the Lupus Foundation of America website, Reuse says of the 13 possibilities, "with the exception of headache, fever, and butterfly rash" from cheek to cheek over the nose.
"It's extremely variable from person to person," Rubinstein says. Mild forms may require little medication, while severe cases need more aggressive therapy. "Medicines are tailored to the patient. Our goal with medication is to maintain health and prevent episodes." In the future, researchers hope to identify items in the blood or urine that may predict the development of lupus or certain manifestations of disease, Rubinstein says. Treatment of patients may become simpler if scientists can determine which genetic makeups react best to particular therapies. Meantime, "borrowed" medications — those developed to treat more common diseases — are being used and tested in conjunction with known therapies for lupus symptoms to see if outcomes improve.
Rubinstein and another rheumatologist, Dr. Lenore Buckley, meet quarterly with other VCU departments to discuss important issues in lupus that extend beyond rheumatology, such as obstetrics, pulmonary medicine and dermatology. They also are planning clinical studies to better understand lupus.
Reuse, who is white, fits a profile of many lupus patients. The disease strikes women nine times more frequently than men, with onset most often between the ages of 15 and 40. It is more prevalent among minorities than whites. Rubinstein says incident rates are higher in inner-city areas.
The cause of lupus is unknown. Although treatable, it has no cure.
"[Lupus is] not common like heart attack and stroke, but it's not super rare," says Dr. Franklin Mullinax, a retired rheumatologist who has served on the Lupus Foundation of Virginia's medical advisory board.
Lupus cases occur more often than incidences of leukemia, muscular dystrophy or cerebral palsy, according to the state lupus foundation, a nonprofit educational and support group. It cites a national market research survey that estimates the number of Americans diagnosed with lupus between 1.4 million and 2 million.
Reuse's first doctor assured her that she shouldn't fear dying from lupus. The disease is not necessarily progressive and is not usually fatal. Lupus is not a form of cancer, and it's not contagious.
"There is no stigma to having lupus," says Della Hunter, chair of the state foundation, which has about 300 members in its six chapters.
While the cause of the disease remains a mystery, Rubinstein says the medical community believes two things must be true for lupus patients: They have both a genetic predisposition and an environmental trigger, such as a virus, that spawns a full-blown case of lupus.
Reuse does not recall anyone in her family having lupus. But her maternal grandmother had multiple sclerosis, an inflammatory disease of the nervous system. "I got my willpower from her. She would go up and down the basement stairs with her canes just for exercise a couple times a day to make herself keep doing things. … She was not one to sit around, either."
Reuse's medications are many. Drugs to counter lupus symptoms. Pills to prevent or lessen further flare-ups. And medicine to address drug side effects, such as high blood pressure. Reuse also takes Coumadin for the clotting issue; prednisone on and off to lessen inflammation and to regulate activity in her immune system; and pharmaceuticals to fend off the loss of bone density, which could come from long-term prednisone use — "all of these things that normally I would not have a problem with," Reuse notes.
Her husband, Rich, a forester with the Virginia Department of Forestry, recalls frustration about the amount of time it took to diagnose the disease and anxiety about the allergic reactions his wife endured from various medications. "Sometimes, they'd wipe her out," he says. "These drugs are pretty strong."
Her family has pitched in around the home and is protective of Reuse. But she doesn't dwell on the low times or restrictions to stay out of the heat and sun that cut into her love of the outdoors. She can do most of what she wants to do or needs to do.
"Many patients try to nurse the disease," says Hunter of the state lupus foundation, which is planning activities for September through November, lupus awareness season. "Don't let lupus control you. You control lupus. A positive attitude is very therapeutic."
But she also knows first-hand how devastating lupus can be. Her daughter was homebound for nearly two years after a flare-up that led to intracranial pressure. The treatment, high doses of prednisone, led to excessive weight gain and hair loss. Her daughter recovered, lost the weight, regained the hair and turns 46 in August. The mother of three and grandmother of one drives a bus for the Henrico County school system.
"A lot of lupus patients … are real high achievers," Hunter says. "Then they find themselves trying to do too much and wind up in bed for two or three days." Moderation, she says, is key.
Reuse says she appreciates that her employer and work colleagues at Cosby High School and Providence Middle School have accommodated her. "If I wasn't working full time, I would let [lupus] control me a lot more. But when you have to get up and get going every day, you just do. Luckily, I'm well-enough-off that I can."