Living with RA: It’s not what you read in the Medical literature
By Lorie A. Parch
The nonprofit Rheumatoid Patient Foundation recently released a white paper on the results of a survey of rheumatoid arthritis (RA) patients, “Unmasking Rheumatoid Disease: The Patient Experience of Rheumatoid Arthritis.” RA activist Kelly Young founded RPF in 2011 to improve education and access to care for RA and juvenile arthritis patients, and to increase funding for research.
About 1.3 million Americans have RA, according to the Arthritis Foundation. This form of inflammatory arthritis is an autoimmune disease without a clear cause.
Nearly 1,500 patients, with a median age of 47 years, participated in the RPF survey. Almost all the respondents (93 percent) were women. Patients had been diagnosed with rheumatoid disease an average of 6.6 years earlier, though one-quarter had been diagnosed in the previous year.
Here are some highlights from the report. If you’re an RA patient, see how these findings square with your experience:
- Forty-eight percent of patients had symptoms for over a year before they were diagnosed; another 30 percent had symptoms for one to five before getting a diagnosis.
- Nearly all respondents said they had RA-related fatigue.
- Sixty-eight percent said that in an average month, they had no days when they are free of pain.
- Though doctors often tell RA patients to exercise, 67 percent of respondents said physical activity makes their pain worse. Just 18 percent said it decreases their pain.
- Patients said their pain was relieved most effectively with a combination of medication, rest, and heat.
- What makes RA pain worse? Exercise, frequent use of particular joints, and “it’s random” were the most frequent answers.
Survey questions covered all aspects of patients’ experience with the disorder, including care. Their answers made clear that in most cases, treatment is not ideal: Eighty-six percent said that their symptoms weren’t relieved by DMARDs (disease-modifying anti-rheumatic drugs) or biologic treatments.
The white paper particularly noted how much of the feedback from patients doesn’t correlate with the medical literature. For example, they wrote that the survey data challenge the concept of morning stiffness that tends to go away after a patient gets out of bed. Nearly a quarter seem to follow that trend, it said, but the majority do not, citing more pain and stiffness … throughout the day.”
Perhaps most disturbing is that most RA patients live with pain even though they receive treatment. That needs to be voiced until there are better options for reliable, safe, and complete relief for rheumatoid disease.
Are you an RA patient? Do the survey results reflect your experience, or have you experienced something different? Please join our community today to discuss.