If you’re living with palindromic rheumatism (sometimes called palindromic arthritis) you probably experience multiple ‘flares’ during which your joints, and sometimes your skin, become inflamed. Flares can be unpredictable, very quick and short-lived, affecting different joints at different times, sometimes very severely. Between attacks, joints tend to go back to normal, so it can be difficult to diagnose.
Even with a diagnosis, information about the disease is still hard to find, and lack of research limits treatment options.
What work is Arthritis Research UK doing on palindromic rheumatism?
With the support of a charitable trust we are conducting a programme of work on palindromic rheumatism. Our aim is to help healthcare professionals to better understand and treat the disease, and to give people with palindromic rheumatism the information they need.
The first step was a patient survey, and the resulting report is now available. You can read the Summary Report online, but if you'd like to receive the full report please email firstname.lastname@example.org. Many thanks to everybody who took part – the level of response was fantastic and your responses to the survey have already helped to shape our patient information resource on palindromic rheumatism.
We're also funding a clinical research project which will tell us much more about this poorly understood condition.
Anna-Marie’s life was turned upside down when she suddenly developed excruciating joint pains in her early 30s. Because her symptoms fluctuated, and because little is currently known about palindromic rheumatism, it took 18 months to get the right diagnosis and nearly ten years to find the right drug treatment.
Now Anna-Marie has control of her life and works full-time again as a Regional Fundraising Manager for Arthritis Research UK. 'I know what it’s like when no one understands,' says Anna-Marie, 'and this research will shine a much-needed light on the disease.'