A common problem: remaining pain with Rheumatoid Arthritis
Remaining pain with Rheumatoid Arthritis (RA) has been a topic on RAW since 2009. We’ve discussed how people manage the common “leftover” symptoms such pain, fatigue, and stiffness while being treated for rheumatoid disease. Leftover or remaining pain is the subject of an interesting abstract reported at the recent American College of Rheumatology scientific meeting.
“Remaining Pain Is Common In Early RA Patients Treated With Methotrexate”
A total of 1241 “early RA” patients were studied via the Swedish Rheumatology Quality Register (1996–2010) as follow up to the Epidemiological investigation of RA (EIRA) cohort (1996–2009). “Remaining pain” was defined according to a 100 mm visual analog scale (VAS) above 20 mm 3 months after initiation of methotrexate monotherapy.
“Majority of early RA patients starting methotrexate monotherapy at diagnosis have remaining pain after 3 months”
Remaining pain with Rheumatoid Arthriits was observed in 57% of patients at 3 months. Investigators grouped responses and frequency of remaining pain according to “good, moderate, and no response” EULAR response criteria using DAS28. DAS28 includes a count of 28 joints for tenderness, 28 joints for swelling, an erythrocyte sedimentation rate (ESR), and patient’s global disease activity measured on a VAS. EULAR response level depends on DAS28 improvement for a particular level of disease activity (see screenshot from DAS-score.nl).
Most “early RA” patients continued to experience pain even with a DAS28 “EULAR response:” Frequency of EULAR “good,” “moderate,” and “no response” was 40%, 38%, and 22% respectively, and in these response groups, the frequency of remaining pain was 29%, 70%, and 83% respectively (see pie chart). An increase in pain was seen in 19% of patients during treatment, and frequencies of increased pain were 9%, 15%, and 45% respectively.
What does it mean if a majority of patients have remaining pain with Rheumatoid Arthritis?
The first thing to do is look for things that associate with the remaining pain in order to understand it. As a patient-researcher, I’ve done some qualitative research in this area. In most people with Rheumatoid Disease (PRD), pain does not occur in isolation, so I tend to favor the first option below.
Possibility #1: The conclusion you’d come to if you just observed patients and their descriptions of their disease activity: Remaining pain is part of residual disease activity of which many PRD are aware. Treatments developed specifically to lower certain indicators such as sed rate (ESR) may be successful in doing so, but do not usually dampen all disease activity to the point that a PRD feels perfectly normal with regard to symptoms. Even PRD with good responses to treatments typically still live with RD; i.e. they make certain adjustments in life, take symptom-treating medications, live with some symptoms, and experience consequences after activities.
I recommend the recent Rheumatoid Patient Foundation abstract and these two posts with many patient comments:
A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 2
A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 1
KEY POINT: Just as we’ve begun to clearly acknowledge Rheumatoid Disease activity that is extra-articular, we are also bringing recognition to musculoskeletal disease activity that is ignored when disease activity measurement is limited to synovitis (joint pain and swelling).
Examples of other symptoms:
- Loss of range of motion
- Reduction in function / inability to do previous tasks
- Common damage or inflammation of tendons or tendon sheath or bursa, including bursitis, carpel tunnel, Baker’s cysts
- Change in appearance, size, or position of joints
- Neurological symptoms such as numbness and weakness
- Locking, spasms, or cramping
- Cartilage loss
People on the outside who are not keenly cued in to the experiences of PRD are tempted to offer an alternative explanation, as the author of the current study did: “These results are in line with the hypothesis that a subgroup of early RA patients exhibits pain that is not inflammatory mediated and where non-RA causes and alternative treatment strategies can be discussed.” The basis for this supposition: “…EULAR good responders and had a remaining pain at follow-up exhibited lower ESR (p<0.02) and higher HAQ (p<0.02) at baseline compared to patients with less pain.”
This suggests the frequently cited non-inflammatory pain, “fibromyalgic pain,” chronic pain syndrome, phantom limb pain, over-focusing, catastrophizing, hypochondriasis, etc. explanation for remaining pain.
- The first problem with this hypothesis is that the study showed MOST PRD experience remaining pain after treatment, not a small subset. Another study, referenced in this one included 2800 adults from Europe and the U.S. with self-reported RA in a survey by internet, patient databases, and word of mouth. The majority said their RA was “somewhat-to-completely controlled,” and of those patients, most (75% in the Europe and 82% in the U.S.) reported having moderate to severe pain within the previous two months.
- A second problem is that inflammatory activity as an explanation for remaining pain was not ruled out by the use of expert musculoskeletal ultrasound, or other method.
- Third, the assumption that PRD with lower ESR are not experiencing inflammatory disease activity has been shown to be false. About 40% of PRD have normal ESR throughout the course of their disease.[3,4] We have seen this in our community repeatedly, even while damage occurs. The higher HAQ scores in this group also point to musculoskeletal disease activity that is not being recognized.
What can we do about the problem of remaining pain with Rheumatoid Arthritis?
1) Remember that for people living with Rheumatoid Disease (PRD) pain is seldom an isolated symptom; it’s not just pain. Patients should specifically describe symptoms and how the disease is affecting them. Doctors should put more weight in patient experiences than lab tests.
2) Support the patient-led research of the Rheumatoid Patient Foundation.
Note: Rheumatology Network interviewed Swedish investigator Jon Lampa in the video below.
- It’s Just Pain, Right? No, Dr. No, It’s Not
- Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality
- Blood Tests for Rheumatoid Arthritis: What Is Their Role?
- Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
1 Altawil R, Saevarsdottir S, Wedren S, Alfredsson L, Klareskog L, Lampa J. remaining pain is common in early RA patients treated with methotrexate—results from the EIRA cohort and the Swedish Rheumatology Quality Register. [abstract]. Arthritis Rheum 2013 [cited 2013 Nov 26];65 Suppl 10 :801
2 Taylor P, Manger B, Alvaro-Gracia J, Johnstone R, Gomez-Reino J, Eberhardt E, Wolfe F, Schwartzman S, Furfaro N, Kavanaugh A. Patient perceptions concerning pain management in the treatment of rheumatoid arthritis. J Int Med Res. 2010 Jul-Aug [cited 2013 Nov 26];38(4):1213-24. Available from: http://imr.sagepub.com/content/38/4/1213.long
3 Sokka T, Pincus T. Erythrocyte sedimentation rate, C-Reactive protein, or rheumatoid factor are normal at presentation in 35%–45% of patients with rheumatoid arthritis seen between 1980 and 2004: Analyses from Finland and the United States. 2009 May [cited 2013 Oct 16];36(7):1387-1390. Available from: http://jrheum.org/content/36/7/1387.abstract
4 Wolfe F. The many myths of erythrocyte sedimentation rate and C-reactive protein. J Rheumatol [Internet]. 2009 Aug [cited 2013 Oct 16];36(8):1568-1569. Available from: http://jrheum.org/content/36/8/1568.full