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 hugepreventing or at least slowing down potentially disabling joint destructionit'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 noncompliancethe 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% and 36% of the time, depending on the drug taken. Other studies have reported noncompliance rates as high as 70%.
"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.
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 Plaquenilthat 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.
RA in general can increase lymphoma risk, and although the Food and Drug Administration has investigated a link between some biologics and lymphoma, there isn't evidence to support the link.
Some people can be hesitant to take methotrexate, Dr. Ritchlin adds, due to the fact that it is also given to cancer patients in chemotherapy regimenseven though the dosage for RA is only a fraction of that used in cancer treatment.
Dr. Matteson says education is key. "The more the patients understand about the drugs, the more likely they are to be compliant, even if they see they are problematic. We point out that they also have a very difficult and often devastating disease, so we try to put that in perspective."
Another way to keep things in perspective is to stay on top of monitoring the disease. Dr. Matteson says that his patients receive regular tests, such as X-rays, to assess their joint health. If patients see that joint destruction has halted since they started a DMARD, for example, they may feel more compelled to stick to their drug regime.
However, if the medicines do turn out to be too difficult to take, Dr. Matteson recommends that patients bring up these issues with their doctor and ask about alternatives. "If the problems are prohibitive, we have effective alternatives available. We try to individualize the therapies," he says.
For example, if methotrexate makes a patient nauseated, Dr. Matteson would seek another option or another way of taking methotrexate, or recommend an antinausea medication to counter this side effect.
Cost and other issues
DMARDs and other RA medications aren't necessarily easy to take, cheap, or fast acting. Some have to be taken two or three times a day (Plaquenil is one example); others are taken once a day; and some other drugs, like Enbrel, require a self-injection once a week.
Lundberg, who lives in the Minneapolis area, had been visiting a clinic every two months for a Remicade infusion. But when she moved to Ireland for a short time, she had to switch to Enbrel, which is self-injected, because it was difficult to get to the doctor's office for regular appointments. "It's not hard to learn the injection, but I never got comfortable doing it," she says. "I always got really nervous and hated it."
Dr. Matteson advises patients to speak with their doctor about switching to a different delivery method. "I seek to offer these where available," he says. "This is a common point of discussion."
Cost is also a factor. The cheapest DMARD is probably methotrexate, which can run from $500 to $1,000 a year, depending on factors like dosing, how it is delivered, and insurance coverage, says Dr. Matteson. Biologics "are easily up to $20,000 or $30,000 a year and insurance is extremely variable," he adds.
If cost is a factor, contact the drug manufacturer. Almost all will provide reduced-cost medication if you meet their income requirement. The Chronic Disease Fund, Patient Advocate Foundation Co-Pay Relief, and The HealthWell Foundation are nonprofit organizations that help people with RA cover their co-payments and other medical expenses.
When you start a new medication, it can also help to have realistic expectations. It can take months for some of the DMARDs, such as Remicade, Enbrel and Humira, to work, says Dr. Baethge.
Overall, one of the best ways to stick with treatment or cope with side effects is to talk to other people with RA. Social support is invaluable for any chronic condition, and about 1.3 million people in the U.S. have RA. "RA affects 1% of the population so it's not hard to find someone," Dr. Baethge says.
Lundberg has volunteered with the Arthritis Foundation, where she has met other young people with RA, and even started a blog.
"It makes me feel like I'm not totally alone," she says.