Her first symptoms were in her legs: swelling, pain, limping.
Those were the signs, Joanna Pryor learned, that she had developed rheumatoid arthritis, an autoimmune disease that affects an estimated 1.5 million Americans.
For reasons unknown, three times more women are affected than men. The cause of this disease also is unknown, so doctors will only say it’s a combination of genetic and environmental factors.
RA is one of at least seven types of arthritis — ranging from the commonly known osteoarthritis, which affects 27 million Americans, to the little-seen Sjogren’s syndrome that tennis great Venus Williams suffers from.
“If you check public-health records, the number-one cause of hospital admissions and doctor visits is related to a musculoskeletal problem,” says rheumatologist Dr. John Whelton, Pryor’s doctor and a Palm Beach resident.
Pryor began treatment with methotrexate, also used in higher doses as a cancer drug; and Enbrel, used to treat several types of arthritis.
Despite the treatment, she battled pain in her knees, hands and wrists, and it became difficult for her to move.
“It went bad very rapidly,” she says. “One’s life is totally changed.”
She underwent two hip replacements because the disease ruthlessly attacked her hips. But that seemed to precipitate a turnaround.
“Very slowly, almost imperceptibly, I was getting better. Without the hip replacements, I would be in a wheelchair,” she adds.
She really doesn’t know why she has gone into remission, but at 82 — and 10 years into her diagnosis — she can walk and dance, and the pain in her hands is gone. She is still taking her medications.
She likes to think that having a good outlook and family support has helped. Her husband of 38 years, Louis, has been there for her, she said, and she credits his care and her efforts to embrace life and remain upbeat for some of her turnaround. She never took painkillers.
“You pray and concentrate on happy thoughts,” she says.
“When you go into a concert, it is uplifting. You are taken away from your pain. I was getting my mind distracted into happy things. You need to laugh and keep your spirits up.”
The Arthritis Foundation also recommends alternative therapies such as meditation and yoga to help control pain.
Pryor gives a nod to water exercise and to her doctor as a resource for pain management, as well. “I would hobble in to see Dr. Whelton, and when I came out, I would feel better,” she says with a smile.
Coincidentally, Whelton said that several years ago, he participated in a study on the value of placebo treatments — one in which drugs are not used — and found that “fully one-third of the people had improvement just by coming to see me, even after one year.
“There is a huge placebo effect from many things we do,” he said.
The medical and scientific community is concentrating on improving drug treatments for these different arthritis conditions and is seeing improvement in care, Whelton said. But it’s hard to stay one step ahead.
“It’s cunning and smart,” he says of rheumatoid arthritis. “It is not a static disease.”
Genes are one area being studied, in order to see how a tendency in families might make a person vulnerable. Some day, it may be possible to be tested and to act to prevent development of these conditions.
Whelton has already seen improvements in treating RA, he said. “Years ago, it had a downhill course. Nowadays, with aggressive treatment, 98 percent (of treatments) are successful. Two percent do poorly. That’s a very small minority. We have a good window of opportunity for treating during the first two years.”
As far as prevention, the opportunity can exist with osteoarthritis. For example, keep your weight down, watch what you eat, and be aware of so-called “wear and tear.”
Whelton says that tennis players, for example, shouldn’t keep playing the same way when they are experiencing pain or injury.
“That’s maybe not a smart thing to do. Take a lesson from a professional. Change the racket you are using.”
He also suggests exercising for about 30 minutes, five times a week, as a way to keep muscles toned and stretched.
As for inheriting genes that make you susceptible? “Pick new parents,” Whelton says with a grin.
But seriously … as he and the Arthritis Foundation advise, your genes aren’t the only factors to consider.
As Arthritis Today says on its website, ArthritisToday.org, “It’s important to remember that arthritis is a multifactorial disorder, and simply inheriting a gene doesn’t mean you will develop it.”