Both physicians and patients agree that rheumatoid arthritis flares are more painful than regular days. For non-RA patients, imagine a Jack the Ripper running around and slashing every surface in the affected joints.
Alternatively, the affected joint(s) may feel like they’re pinched, jabbed, burned, crushed, drilled, throbbing, wrenching, or exploded for hours, days or weeks. The flare may stay in a single joint, spread to other joints, or be in many joints at once. (Here’s an article on describing your pain to physicians so they can more closely understand it.)
Flares also reduce strength, decrease walking stamina and balance, lower your ability to get your hands and arms to do what you need, increase fatigue, and often stiffen joints [1].
Imagine dropping things that yesterday were easy to hold and carry. The exhaustion sets in—made worse by the pain …and worry. Few positions on a bed or chair allow sleep overnight.
The rheumatoid arthritis flare triggers a change in the RA patient’s treatment. You may add a non-steroidal anti-inflammatory drug (NSAID) such as ibuprofen, or a doctor-prescribed steroid. Alternatively, your physician may write a prescription to add or increase the dose of a disease modifying antirheumatic drug (DMARDs) or a current biologic medication.
About a third of flaring RA patients cancel a social activity. About a half reduce their participation during flares [1].
The worry cycle kicks in—when will it be gone? Will it ever be gone? Will it come back?
To me, the worst parts of flares were their spontaneous timing (usually when I was busy), excruciating pain, joint weakness, and having to change or cancel plans.
Thus, I’ve been seeking, developing, and trying self-management strategies myself and have not had to cancel plans for about a decade.
First of all, it depends on the RA patient. About 4 of every 10 interviewed RA patients in a Canadian study (195/501) reported having a rheumatoid arthritis flare [1].
Longitudinal observation studies involve compiling the health status of the same RA patients every 3 to 6 months for years.[2] In a Canadian longitudinal study, about 1 in 4 patients (24%) reported being in a flare. In comparison, physicians classified 32% of patients with a flare (about 1 in 3 patients as being in a flare).[2]
Even most RA patients with low disease activity for 2 years ―classified as remission― experienced one flare in the following two years, usually one or less per year [3]. The 149 patients reported that 184 flares had occurred between medical visits. Their physicians identified 104 flares occurred during follow-up visits.[3] Only one of every six of these patients (16.7%) reported no flare during the two year period.[3]
Thus, flares occur, even in people with low disease activity.
Ometto et al. determined by X-ray that the RA-affected joints of 18 of the 149 RA patients in the study have gotten worse during the 2 year study [3].
Interestingly, more self-reported flares correlated with more damage to the joints over time [3].
Thus, preventing or stopping flares as early as possible is an important goal.
One study reported that the flare of two-thirds of the RA patients (67%) lasted more than one week. Most RA patients (55%) said the flare lasted more than 14 days [1].
Physicians are developing classification criteria for a rheumatoid arthritis flare so physicians can agree on whether a patient in a clinical trial is having a flare.
They asked 14 groups of RA patients to describe what it feels like to have a flare [1]. They assessed the frequency of flares, how long they lasted on average, and the symptoms associated with a patient-reported flare.
As explained in six domains or categories provided by the OMERACT RA Flare Group [1], RA patients with a flare up experience:
More
· Pain (visual score from 1 to 100)
· Fatigue (Vitality, unusual fatigue / tiredness in past week)
· Stiffness (morning joint stiffness score)
Higher
· Tender joint count (severity of joint area pain; patient’s count and physician’s count)
Lower
· Participation (physical, social function, productivity while working, RA affecting daily activities)
· Physical function (daily activity score, daily activities in last 7 days; less strength, shorter reach)
Rheumatologists may suggest to patients with low RA disease activity to reduce the dose or lengthen the time between doses as a way to reduce the potential challenge of side effects.
A recent meta-analysis of multiple studies suggests that about a third of RA patients with low disease activity or in remission who reduced their DMARD dose did not experience a flare within the first year of stopping.
Physicians will probably say no.
Personally, I’ve been doing it for years—so I don’t have to alter plans. I suggest that you make every effort to identify the causes of your flares so that you can eliminate the problem(s).
At the beginning of searching for causes of flares, I would identify a single trigger and then avoid it. It helped. Because I didn’t get fully better, then I knew there were other triggers. Just consider that some are harder to identify—sorta like reading an Agatha Christie novel.
Take the mindset of a Sherlock Holmes character, looking for clues.
Selected references
1. Bartlett, S.J., V.P. Bykerk, R. Cooksey, et al. Feasibility and Domain Validation of Rheumatoid Arthritis (RA) Flare Core Domain Set: Report of the OMERACT 2014 RA Flare Group Plenary. J Rheumat, 2015. 42(11): 2185-2189.
2. Bykerk, V.P., C.O. Bingham, E.H. Choy, et al. Identifying flares in rheumatoid arthritis: reliability and construct validation of the OMERACT RA Flare Core Domain Set. RMD Open, 2016. 2(1): e000225.
3. Ometto, F., B. Raffeiner, L. Bernardi, et al. Self-reported flares are predictors of radiographic progression in rheumatoid arthritis patients in 28-joint disease activity score remission: a 24-month observational study. Arthritis Res Ther, 2016. 18: 89.