Why do patients with rheumatoid arthritis often stop disease-modifying antirheumatic drug (DMARD) therapy as prescribed by their rheumatologist?

Why Patients Discontinue DMARD Therapy in Rheumatoid Arthritis

Patients with rheumatoid arthritis frequently discontinue DMARDs because they perceive these medications as "poisoning the body" with alarming side effects that intensify their disease identity, coupled with doubts about efficacy and distressing uncertainties about long-term consequences. 1

Primary Psychological and Perceptual Barriers

Intensified Disease Identity

• Starting DMARD therapy signals disease severity to patients, making them feel their condition is deteriorating and requiring "strong medications," which paradoxically reinforces their identity as seriously ill 1
• The prospect of lifelong therapy is daunting and overwhelming, leading patients to resist long-term commitment to treatment 1
• Patients interpret the need for DMARDs as confirmation that their disease is worse than they initially believed 1

Fear of Medication Toxicity

• Patients describe a pervasive fear of "poisoning the body" with DMARDs, viewing these medications as inherently dangerous chemicals 1
• The requirement for regular monitoring (blood tests, liver function, kidney function) reinforces patients' perception that DMARDs are toxic substances requiring surveillance 2
• Concerns about serious adverse events dominate patient thinking, even though most adverse reactions are reversible except for hydroxychloroquine-induced retinopathy and methotrexate-induced liver cirrhosis 2

Doubts About Efficacy

• Patients frequently doubt whether DMARDs are actually working, particularly during the 8-12 week lag time before therapeutic effects become apparent 1
• When patients experience only "mediocre benefit" rather than miraculous recovery, they question whether continuing therapy is worthwhile 1
• The gradual nature of DMARD efficacy contrasts with patients' expectations for rapid symptom relief 1

Adverse Effects and Treatment Burden

Medication Side Effects

• Adverse effects are the most common reason for treatment discontinuation, with infusion-related reactions (dyspnea, flushing, headache, rash) being particularly problematic 3
• In clinical trials, 7% of patients taking adalimumab discontinued due to adverse reactions compared to 4% on placebo, with injection site reactions occurring in 20% versus 14% 4
• Most adverse reactions occur during the first few months of treatment, the critical period when patients are forming opinions about long-term therapy 2

Monitoring Requirements Create Anxiety

• The intensive monitoring schedule (more frequent during initial months) paradoxically increases patient anxiety about medication dangers 2
• Regular blood counts, liver tests, kidney tests, and urine tests serve as constant reminders of potential toxicity 2
• Patients interpret monitoring requirements as evidence that physicians also consider these medications dangerous 1

Social and Informational Influences

Conflicting Information Sources

• Patients receive conflicting and confusing advice from multiple sources, creating uncertainty about whether to continue therapy 1
• Being "swayed by others' experiences"—particularly negative anecdotes from other patients—powerfully influences adherence decisions 1
• Internet information and social media often amplify fears about DMARD toxicity without providing balanced perspectives 1

Relationship with Healthcare Providers

• The quality of the patient-physician partnership directly impacts adherence, with patients more likely to continue therapy when they feel heard and supported 1
• Patients value "comprehensive and ongoing care" and "confidence in medical care," but discontinue when these elements are lacking 1
• When patients don't feel they can voice concerns in a supportive environment, they are more likely to stop medications without informing their rheumatologist 1

Treatment Expectations and Control Issues

Desire for Autonomy

• Patients want "complete ownership of decision-making" regarding their treatment, and may discontinue DMARDs to assert control over their bodies 1
• Some patients prefer "taking extreme risks" by stopping medications rather than accepting what they perceive as loss of bodily autonomy 1
• The need to "minimize lifestyle intrusion" leads patients to discontinue medications that interfere with daily activities 1

Unrealistic Expectations

• When patients expect "miraculous recovery" and instead experience gradual improvement, disappointment leads to discontinuation 1
• Patients who feel they are "reaching the end of the line" with treatment options may give up on therapy entirely 1
• Prognostic uncertainty with changing treatment regimens creates anxiety that motivates some patients to stop all medications 1

Practical and Access Barriers

Treatment Complexity

• Long-term treatment is frequently limited by loss of response and/or onset of serious adverse events, creating a cycle of medication changes that exhausts patients 5
• The need to switch between DMARDs when one fails reinforces patients' belief that these medications don't work 5
• Combination therapy regimens increase pill burden and complexity, reducing adherence 5

Biologic-Specific Issues

• Patients perceive biologics as "expensive medications that must be better," creating unrealistic expectations 1
• Fear of "dispossession"—losing access to biologic agents—creates anxiety that paradoxically may lead to discontinuation 1
• Re-administration of infliximab after a treatment gap results in higher incidence of infusion reactions, discouraging patients from restarting 3

Clinical Implications for Improving Adherence

Communication Strategies

• Creating a supportive environment where patients can voice concerns improves treatment satisfaction and adherence 1
• Rheumatologists should proactively address the "poisoning the body" narrative by explaining DMARD mechanisms in non-threatening terms 1
• Setting realistic expectations about gradual efficacy (8-12 weeks for methotrexate) prevents disappointment-driven discontinuation 1

Monitoring the Critical Early Period

• Since most adverse reactions and discontinuations occur during the first few months, intensive support during this period is essential 2
• More frequent follow-up visits during the initial 3-6 months allow early identification of concerns before patients stop medications 2
• Explaining that monitoring is for early detection rather than evidence of danger may reduce anxiety 2

Leveraging Positive Influences

• Peer support programs can counterbalance negative anecdotes by connecting patients with others who have positive DMARD experiences 1
• Emphasizing that DMARDs help patients "maintain roles" and participate in valued life activities motivates continuation 1
• Building trust through "partnering with physicians" and demonstrating comprehensive ongoing care improves long-term adherence 1

Addressing Specific Concerns

• For patients concerned about toxicity, emphasize that most adverse reactions are reversible and that the 2021 ACR guidelines support DMARD continuation at current doses over dose reduction when patients are at target 6
• For patients doubting efficacy, explain that even with "mediocre benefit," DMARDs slow joint damage and improve long-term outcomes, which may not be immediately apparent 5
• For patients wanting control, frame DMARD use as an active choice to prevent disability rather than passive submission to treatment 1