Imagine having the flu, for months and months at a time, every year for 38 years. Every Christmas, the body aches, fevers and extreme fatigue descend until Easter.
That's how life was for Linda Ruescher of Tampa.
"I had the flu all those months. Every doctor said we think you have a virus and there's nothing we can do," the 58-year-old recalls.
Then came the morning in February 2003 when Ruescher was so debilitated she couldn't even dress for work. She called a friend who hurried over, took one look at Ruescher and called 911.
In the hospital she was treated for inflammation in the lining of her heart and lungs, kidney disease and a severe form of anemia in which her bone marrow had essentially stopped making blood cells.
Fourteen days later she was sent home with a diagnosis she never expected: lupus, or more technically, systemic lupus erythematosus.
"I was numb. I didn't feel anything. I just sat and stared for weeks, and slept." Someone bought her a book about lupus, but Ruescher wasn't ready to read it. "I couldn't bring myself to even turn the book over and look at the cover. I did not want to know," she says.
"It took six weeks before I decided I had to figure out how to live with this and started reading the book."
Diagnosis is difficult
It's no wonder Ruescher had difficulty wrapping her brain around the diagnosis.
Lupus is a complex autoimmune disease, meaning that for unknown reasons, the immune system, the body's own defense system, mounts an attack on healthy tissue and organs like the joints, heart, lungs, kidneys, skin and blood. The result is inflammation, pain and, in severe cases, organ failure.
Certain factors can trigger a flareup of symptoms, including sunlight, smoking and hormonal changes. Ruescher's main trigger was stress. She is a part-time church musician, and her flareups came during the busiest times at church.
Adding to the confusion, there is no single definitive diagnostic test. Doctors must look for hallmark symptoms, such as fatigue and joint pain, the presence of certain proteins in the blood and urine, and kidney problems.
A rheumatologist who treats lupus patients can recognize the signs quickly, said Dr. Michael Burnette, a rheumatologist with Tampa Medical Group. But it takes most patients so long to find the right specialist, the Lupus Foundation of America says patients wait an average of three to five years to get an accurate diagnosis. It took Ruescher much of her adult life to find out what was wrong.
There is no cure for lupus, so the goal of treatment is to control pain and inflammation, prevent flareups and prevent organ damage. Nonsteroidal anti-inflammatories, or NSAIDS, like ibuprofen and naproxen are the first-line drugs for swelling and pain. If those don't work, corticosteroids are the next step.
Antimalarial drugs can help with fatigue and joint pain. In the most severe cases, certain cancer-fighting drugs are used to suppress the overactive immune system, but they can cause side effects including nausea and hair loss.
For the first time in 50 years, there is a new drug in the pipeline specifically for lupus. Benlysta is expected to receive FDA approval this year; a price has not been set, but a figure of $20,000 a year has been reported.
Burnette has been working with the drug as part of clinical trials for about five years.
"I like it because it has a good side effect profile. It's not as toxic as some of the other drugs we use," he says.
Benlysta works by suppressing a part of the immune system associated with lupus. But a report released last week by drugmakers Human Genome Sciences and GlaxoSmithKline found that, while Benlysta significantly reduces symptoms for about a year-and-a-half, it is no more effective than other drugs commonly prescribed for lupus.
"That's disappointing, sure." says Burnette, "but I'm still glad we have something else to offer patients. I think it will also lead to many more drugs for lupus and arthritis."
Ruescher, who works part time for the local chapter of the Lupus Foundation, hasn't had a flareup in two years, and is considered in remission. She takes two medications, an antimalarial and another that suppresses the immune system.
She also thinks lifestyle is key to keeping lupus under control, including a healthy diet, daily yoga and meditation, aerobic activity four days a week, and, "I religiously avoid stress," she says. "So it's not one thing that has me in remission. It's a whole bunch of things."
Irene Maher can be reached at firstname.lastname@example.org or (813) 226-3416.