Why It's Hard to Stick With Rheumatoid Arthritis TreatmentMany factors lead patients to noncompliance
If dealing with rheumatoid arthritis is a full-time job, the treatment for RA is a task that requires painstaking attention to detail and a whole-hearted commitment to a long-term goal.
While the payoff can be huge — preventing or at least slowing down potentially disabling joint destruction — it's still hard for patients to stick with the treatment, whether it's pills, self-administered injections, or three-hour-long infusions given in a doctor's office.
Consider also that RA medications can be pricey and have side effects and that there's the psychological impact of having to undergo lifelong treatment, and you have a recipe for noncompliance — the medical term for people who don't take their medicine as directed.
"Compliance is a huge issue," confirms Christopher Ritchlin, MD, MPH, a rheumatologist and professor of medicine at the University of Rochester Medical Center in New York. According to a 2007 study, some people with RA missed their meds between 10 percent and 36 percent of the time, depending on the drug taken. Other studies have reported noncompliance rates as high as 70 percent.
"I can deal with bouts of pain, but the fact that it's chronic and never going away, that's the hardest thing to deal with," says Angela Lundberg, 32, who was diagnosed at 18.
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It's especially tempting to skip medication when the beneficial effects aren't obvious unless you're looking at an X-ray showing the condition's progression (or even if they are obvious). Still, research suggests that without treatment joints will deteriorate more rapidly and the journey to disability will be quicker. Hence, it's important to find ways to stay motivated.
How treatment helps
Even though there are many different kinds of RA medication, the mainstay of treatment is the disease-modifying antirheumatic drug, or DMARD. (Other important classes of drugs for RA are inflammation-fighting corticosteroids, like prednisone, and nonsteroidal anti-inflammatory meds, or NSAIDs.)
DMARDs are the only RA drugswhether they are newer biologics, such as Enbrel, Humira, Orencia, Remicade, and Rituxan, or older drugs, such as methotrexate and Plaquenil — that have been shown to slow down joint destruction. After years of research, experts think a "hit it early, hit it hard" approach is best, meaning it's better to take strong medication that delays joint destruction as soon as a diagnosis of RA is confirmed, rather than wait until the disease progresses.
Many of the DMARDs work by suppressing the hyperactive immune system to keep it from attacking the joints. These drugs are typically very helpful so the benefits outweigh the risk of side effectsand side effects are one of the main reasons people may skip meds.
"Each one of the drugs used to treat rheumatoid arthritis has its own unique set of side effects, some of them mild. But most of the drugs that are the most effective have potentially serious side effects," says Bruce Baethge, MD, a professor of internal medicine at Texas A&M Health Science Center College of Medicine in College Station and a rheumatologist with Scott & White in Temple. "Fortunately, they only occur in a small percentage of people, but that doesn't mean it can't happen."
The more serious adverse effects can include a heightened risk for infection, including upper-respiratory infections and even tuberculosis. Methotrexate, a drug that is the "anchor therapy" for the condition, can cause nausea and mouth sores, says Eric Matteson, MD, a rheumatologist with the Mayo Clinic in Rochester, Minn.
The fear of side effects can be as big a problem as the side effects themselves.
Dr. Ritchlin tells the story of one patient who had severe psoriatic arthritis, a cousin of rheumatoid arthritis. "His arthritis was flaring like crazy. He could barely walk," he recalls. But when asked how often he was taking Enbrel, the man told Dr. Ritchlin that it was only once every four months, rather than twice a week as recommended, because he was afraid of getting lymphoma.