Teri Jeansonne knew she was better when she could turn and yell at her kids in the car.
A victim of the autoimmune disease scleroderma, the 42-year-old mother of three could feel her body turning to stone before she signed up for an experimental treatment with a potent cancer drug.
“I would get up to take the kids to school in the morning and go home and go back to bed. I could barely move and I hurt from my chin to my toes. I was using morphine patches and taking 31 pills a day and nothing helped.”
When Jeansonne’s insurance company wouldn’t pay for her to go to Johns Hopkins for an experimental chemotherapeutic treatment, her doctors at Ochsner Clinic agreed to treat her here.
“We had tried everything else and Teri was still getting worse. She was going to die in six to 12 months,” rheumatologist Stephen Lindsey said. Ochsner oncologist Jay Brooks was called in, and Dr. Fredrick Wigley, director of Johns Hopkins Scleroderma Center, was consulted to place Jeansonne on an intensive dose of Cytoxan.
Scleroderma, which means “hard skin,” is a spectrum disorder with a wide range of symptoms and outcomes, Lindsey said. A noncontagious chronic disease of the connective tissue classified as a rheumatic disease, scleroderma can be localized or systemic.
Localized scleroderma usually affects the skin, joints and muscles, while systemic may also affect the esophagus, gastrointestinal tract, heart, lung, kidneys and other internal organs.
As the body attacks itself, the skin thickens and hardens, muscles weaken and, as internal organs are affected, many patients with systemic scleroderma die from respiratory failure.
Systemic scleroderma can be further divided into limited and diffuse sclerosis, with diffuse being the most serious form of the disease, Lindsey said.
Only about 50 percent of patients with diffuse systemic sclerosis survive the 10-year mark of their diagnosis. The prognosis is much better for those with the limited form of the disease – 90 percent survive the same time period.
In the systemic form, such as Jeansonne has, there are abnormalities of the small blood vessels, immune system activation and formation of scar tissue in the skin and organs, causing them to harden. Jeansonne had lost more than half of her lung capacity before starting Cytoxan. Her lung capacity is back up to 60 percent now.
The Cytoxan therapy is very intense and is still considered experimental, Lindsey said. As such, it should only be considered for patients like Jeansonne who are seriously ill with systemic scleroderma and are not responding to conventional therapies.
Cytoxan has been used by rheumatologists to treat scleroderma patients in the past, but generally in low doses, he said. Oncologists have more experience with high dose therapy, which can be very toxic, and that’s why Lindsey and Brooks collaborated on Jeansonne’s case.
Heavy doses of Cytoxan were given to Jeansonne in the hospital every day for five days. She suffered serious side effects – nausea, hair loss, low blood counts and infections – and had to stay in the hospital for one month.
However, even while she was still in the hospital, she began to see her symptoms reverse. Her skin visibly softened and lightened and she could once again move without pain. As her lung capacity improved, she could breathe more easily.
That was a little more than a year ago. Jeansonne is still not completely back to normal. She can’t straighten the fingers on her hands, and there are remnants of hardened skin on her arms. She has some residual scar tissue, nerve damage and joint problems.
However, Lindsey and Brooks said they are hopeful that her scleroderma has been arrested and that she will continue to do well. They are also optimistic about the role that Cytoxan and other chemotherapy drugs could play in the treatment of other seriously ill scleroderma patients.
“I’m so thankful that Dr. Lindsey and Dr. Brooks were willing to go out on a limb for me,” Jeansonne said. “I feel like I have my life back. You know I’m starting to see wrinkles in my skin and I’m so excited. Before, my skin was hard and stretched tight. I’m so proud of my new wrinkles.
“I also gave up my handicapped license plate and that was exciting. I thought I was facing a wheelchair before and now I can walk easily again.”
There are an estimated 300,000 people in the United States with scleroderma, according to the Scleroderma Foundation. The disease occurs more often in women, usually in mid- to late-childbearing years. Lindsey has several hundred scleroderma patients under his care.
Symptoms can include abnormal sensitivity to cold, swelling of hands and feet, joint stiffness and contractures, thickening of skin, gastrointestinal problems, dry mucous membranes, oral, facial and dental problems, and kidney, heart and lung involvement.
Traditional treatment is geared toward symptom management, reducing inflammation, pain relief and prevention of contractures.
For more information about scleroderma, visit the Scleroderma Foundation’s Web site at http://www.scleroderma.org or call (800) 722-4673.
Jeansonne is also active in the Baton Rouge Raynaud/Scleroderma Support Group, which next meets at noon Tuesday at Our Lady of Mercy Catholic Church’s Parish Activity Center, 445 Marquette Ave. For more information, call (225) 751-2328.
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