Trouble Sticking With Your Rheumatoid Arthritis Treatment Plan?

By Linda Rath

Research suggests that more than half of people with chronic conditions, including rheumatoid arthritis (RA), may not take their medications as prescribed. In a 2017 study published in Rheumatology and Therapy, one-third of RA patients in the study stopped treatment within the first year and nearly half quit after two years. 

This is frustrating for doctors, because RA can get progressively worse when it’s not treated. Medications can reduce or prevent pain, disability, serious complications and hospitalizations, but only if patients take them. 

Patients are also frustrated. They face rising out-of-pocket drug costs, potentially nasty side effects and the challenge of juggling multiple meds. Too often, they feel they’ve been excluded from important decisions about their care or don’t understand what their medicine’s supposed to do. Some of these issues, like drug costs, are baked into a complex health care system. Others result from poor doctor-patient communication.

Cost is the No. 1 reason people skip doses, cut tablets or don’t fill prescriptions, according to health economist Austin Frakt, PhD, director of the Partnered Evidence-based Policy Resource Center at the VA Boston Healthcare System and principal research scientist at Harvard T.H. Chan School of Public Health. He looked at many reasons people skip their pills, like forgetfulness, lack of family support or not understanding the value of treatment. But when he studied interventions that addressed these issues — including the use of high-tech pill monitoring gadgets — none improved adherence to medications. Only lowering cost made the difference. 

“The price of medications is a huge barrier to effective care and a huge problem for the doctor-patient relationship,” says Liana Fraenkel, MD, a rheumatologist and researcher in medical decision making at the Yale School of Medicine in New Haven, Connecticut. 

A big stumbling block: Most doctors don’t know what their patients actually pay. This is partly the result of complicated drug pricing and partly because the price varies among patients. So, doctors prescribe medications without the most important data. Then, people often leave the doctor’s office with a prescription they don’t know if they can afford. 

It’s important to take your insurance plan’s drug formulary and how much you’ll need to pay for different meds to all doctor appointments. It will help your doctor understand the true financial impact of a drug. And don’t forget to ask about financial assistance programs.

Most of the 6,000 patients in the Rheumatology and Therapy study quit because their medicine stopped working. Disease-modifying drugs work on different inflammatory chemicals, so it’s often a process of trial and error for RA patients to find a drug that works for their disease.

A big challenge for those with long-standing RA is exhausting the current inventory of available medications and having to live with insufficient relief of pain and other RA symptoms. Work closely with your doctor to recognize the warning signs that a drug has stopped working and develop a plan for immediate next steps. Being proactive will help you to keep your treatment plan and disease control on track. 

One of the most common reasons people don’t stick to treatment and an area where doctors and patients may not see eye-to-eye is the patient's concern about side effects. Dr. Fraenkel says that physicians worry about rare side effects that can be fatal, but they don’t think much about nonfatal problems like nausea, dizziness and diarrhea. 

“As rheumatologists, we may undervalue these issues that patients really struggle with,” she says.

So, tell your doctor what’s going on. Possible solutions include adjusting medication dose or timing, taking it with food or another medication that counteracts the side effect, such as antinausea medication.

Research shows that RA patients are at increased risk of developing complications, such as eye inflammation and comorbid conditions, such as heart disease. So, it’s very likely that they need drugs other than the ones prescribed for RA. 

“Patients say, ‘I don’t want to put that much stuff in my body,’” Dr. Fraenkel says. “Usually it’s the result of frustration. They’ve been sick a long time and have just had it.” Many of these conditions are fueled by inflammation. Aggressive RA control and healthy lifestyle choices can affect how much and how long you need to take other medications. 

Michael Barry, MD, who directs the Informed Medical Decisions Program at Massachusetts General Hospital, believe these opposing views, expectations and lived experiences reflect a breakdown in shared decision making. That’s the process where providers and patients work together to make health care decisions that align with what matters most to patients.

There are two main pillars of shared decision-making: 

• Respect for patient values, preferences and needs.
• Clear, unbiased information on available treatment options — including no treatment — and the benefits and harms of each. 

In shared decision-making, you and your doctor are equals. Your doctor clearly describes possible treatments without putting a finger on the scale. You choose the one that seems to align most with what you want for your life. When you’re actively involved in treatment decisions, you’re more likely to start treatment and stick with it. 

This approach has been shown to work for people with RA. A 2011 study queried more than 2,000 RA patients about their use of a biologic medication. The majority said they chose the medication after discussing things like dosing, risks and side effects with their doctor. The second most important factor in their decision: Help with out-of-pocket costs.