More than 1 in 5 people who have rheumatoid arthritis (R.A.) lived with symptoms of the condition for at least five years before being diagnosed.
That's according to a new survey conducted by the Rheumatoid Patient Foundation, which also noted that only 1 in 4 poll participants with R.A. had been diagnosed within the past year.
Nearly 1,500 R.A. patients responded to the survey, which measured patient demographics, symptoms and patients' experience. The authors described R.A. as a "serious disease":
[But] symptoms can be visibly subtle, making it difficult to understand. Lack of awareness of RA makes it even more isolating. Too often, even doctors doubt how much RA patients endure.
The survey's findings included:
- 93 percent of RA patients who responded were women.
- The median age of people who responded was 47; there was a 78-year gap between the youngest and oldest respondent.
- 2 percent had lived with symptoms for more than 20 years before being diagnosed.
- 99 percent reported "sometimes experiencing RA-related fatigue."
- More than 2 in 3 said they had "zero pain-free days in an average month."
One of the incurable condition's hallmark traits is debilitating pain, for which treatment is hit-or-miss. All of the available treatments have at least one thing in common, though: They're expensive.
R.A. in South Los Angeles
Alexis Gomez is a family nurse practitioner at St. John's Well Child and Family Center in South L.A. He says the clinic gets "a lot" of patients with rheumatoid arthritis, and if they don't start aggressive treatment early, they'll become disabled within a matter of years.
There are also major challenges that come with accessing the specialty care that folks with R.A. require.
"To see a rheumatologist or orthopedist is hard when you have no insurance," Gomez said.
It's also hard to afford treatment. The medications themselves are expensive, but what adds even more to the cost is the amount of follow-up required: Gomez said health providers have to be vigilant about checking patients from complications that might result from taking powerful R.A. medication.
For example, he said, with some prescriptions "you have to check their liver function at least every month for the first three to four months." The cost of those visits and tests add up. A lot of R.A. patients in South L.A. also develop coronary artery disease, said Gomez, which can shave up to 10 years off a person's life.
According to the survey, 1 in 4 respondents said they have joint pain and stiffness "all day and night," while 3 in 4 reported either joint damage or joint swelling.
The survey also looked at the patient experience. While more than 1 in 5 said they never had trouble expressing their R.A. symptoms to their rheumatologist, more than 1 in 8 said they always did.
Others' understanding the level of pain that R.A. patients endure isn't a given, either. In a recent interview, Lakewood resident Arlene Grau – who's lived with R.A. for about five years and is only in her twenties – said it bothers her when people say she "looks fine":
It doesn’t matter what I look like on the outside. Look at my lab work, look at me when I’m in the hospital. They’re not there 24 hours a day, seven days a week. They don’t go through what I go through, and they don’t feel what I feel. And like I said, I’m not going to sit there and cry and complain, because then nobody’s going to want to be around me.
When survey respondents were asked how their RA had responded to treatment, 65 percent said they need "steroids, anti-inflammatories, and/or pain relievers" for relief, in addition to their regular regimen of medicine. More than 1 in 3 said they live with pain "no matter what I do," while only 8 percent said treatment had given them complete relief.
The survey did note several limitations to its findings, including the fact that women and younger patients were overrepresented in the sample, which was self-selected.
A previous version of this story erroneously reported that the average age of female and male survey respondents was, respectively, 47 and 78.