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HomeHealth and Medical‘I’m Too Young for This’: Life With an Early RA Diagnosis

‘I’m Too Young for This’: Life With an Early RA Diagnosis

Lane Taylor was 23, working as a health center assistant, when her joints became so painful that she began typing with just one finger of each hand.    

“My fingers were red and swollen like a mild bee sting,” she says. “They hurt all the time.”

She tried using ice. The pain subsided, then returned. Sometimes she felt sharp stabs in her knees as well, frequently enough that she stopped playing tennis.

One rheumatologist dismissed her concerns. But Taylor, who’d become medically savvy thanks to a cancer diagnosis at age 20, did her own research and felt convinced that she had rheumatoid arthritis (RA), a disease in which the body’s immune system attacks its own tissues.

“‘Wow, you’re too young for this [diagnosis]’ was something I consistently heard from doctors.”

By the time she saw a second rheumatologist, the swelling in her finger joints was unmistakable. Taylor began treatment – hydroxychloroquine and, later, methotrexate – and felt almost immediate relief. “The swelling went down pretty quickly, and the pain went away,” she says. “I was able to resume normal activities.”

The bad news about rheumatoid arthritis is that its prevalence is rising: In 2019, 18 million people worldwide were living with RA, according to the World Health Organization, and that number is expected to grow by about 1% each year. Women are two to three times more likely than men to get RA.

The good news is that, thanks to early diagnosis and new treatment options, people with RA – even younger adults in the midst of career development, family-building, and active lives – can experience remission.

“There is a lot of hope these days for someone with RA, and we can give young patients a lot of reassurance,” says Theodore R. Fields, MD, attending rheumatologist at the Hospital for Special Surgery in New York.

Rheumatologists say that catching RA early is key; telltale signs are pain and swelling of the smaller joints in both hands, wrists, or feet. “The reason to get treatment started early is that our medications can not only reduce or stop symptoms such as fatigue, stiffness, and joint swelling and pain, but they can reduce or stop damage to bone,” says Fields.

The exact cause of RA is still under study, but researchers believe that a genetic predisposition can be triggered by environmental factors such as cigarette smoking and dust inhalation.

Doctors diagnose RA with physical exams, blood tests to look for certain autoantibodies, and other studies including ultrasounds, X-rays and MRIs. Since RA, an autoimmune disease, essentially means the body is in a “civil war” with itself, the goal is to calm the battlefield action as quickly as possible, says Kimberly DeQuattro, MD, a rheumatologist and assistant professor at the University of Pennsylvania.

“We use medication to put out the fire and keep it out,” she says, typically with DMARDs – disease-modifying antirheumatic drugs – like the ones prescribed to Taylor. Rheumatologists may also prescribe steroids to reduce inflammation.

“If you’re a young person, in the midst of trying to have a career and develop your life trajectory, it can be jarring [to get a diagnosis of RA],” DeQuattro says. “You don’t anticipate getting sidelined by a chronic condition.”

People with RA may experience fatigue, occasional fevers, and loss of appetite. Untreated, it can progress to disabling pain and joint swelling; it can also damage the heart, lungs, nerves, eyes, and skin. “It affects the whole person, not just their joints,” DeQuattro says.

On the plus side, she says, younger patients don’t have as many comorbidities –  other conditions that complicate their treatment – as older adults. At the same time, women in their reproductive years need to discuss family planning with their rheumatologists; certain RA medications, including methotrexate, are dangerous during pregnancy.

“The challenging thing for people is that because we have so many [treatments], it’s hard to know which will be the best one for that particular person,” says DeQuattro.

Nilanjana Bose, MD, who practices at Lonestar Rheumatology in Houston, counsels her RA patients about triggers for the disease and lifestyle changes that can help keep symptoms at bay. Poor diet, lack of exercise, and stress can all cause flare-ups of RA, she says. “You cannot just take medication and hope for a miracle.”

The American College of Rheumatology “conditionally” recommends a Mediterranean diet, high in fruits, vegetables, whole grains, nuts, seeds, and olive oil, with limited sugars, sodium, and processed foods.

DeQuattro encourages her patients to be open about RA with their employers, friends, and family members, and to reach out to psychologists or psychiatrists if they need help coping with their diagnosis.

Taylor, now 36, offers similar counsel. “My friends would ask me about [my RA] and actively listen to me talk about my experience,” she says. After her diagnosis, she began doing yoga and, in 2015, became an instructor. She can’t recall the last time she had an RA flare-up.

And she hopes the medication, along with self-advocacy and a strong support system, will keep her disease in remission. “My RA is well-managed,” she says. “I cross my fingers – and that was one of the things I couldn’t do before.” 

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