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 over the next three years. 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. This has now closed and the report will be available in Autumn 2013. Many thanks to everybody who took part – we'll email you the report as soon as it's available. Your responses to this survey are already helping to shape the content of our forthcoming patient information on palindromic rheumatism.
We've also issued a call for further academic/clinical research projects to look in more depth into clinical, biological and genetic factors, disease history and response to treatments, and patients' experiences of diagnosis and treatment.
There may be opportunities for people who have been diagnosed with palindromic rheumatism to take part in the project(s) that we agree to fund. If you think you'd like to get involved, please complete our short questionnaire to register your interest. You are not making a definite commitment at this stage – we'll contact you to let you know more about the projects we fund, and you can let us know then if you're still interested.
If you haven't been diagnosed with palindromic rheumatism we'd still love to hear about your experiences of arthritis or joint pain – why not tell us your story?
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.'