Strange name; strange condition
Published on 05 December 2014
New research aims to shed much-needed new light on the mysterious condition that is palindromic rheumatism. Jane Tadman reports.
Like many types of arthritis,
palindromic rheumatism can strike without warning, causing extreme pain in one or several joints. But what makes it different to most other types of arthritis is that it then disappears as mysteriously as it came, although these attacks, or ‘flares’, can last days or weeks.It’s this very unpredictability, along with the intense pain, extreme fatigue and a general lack of awareness or understanding of the condition, that makes the lives of people with palindromic rheumatism so difficult. Rare, little known and poorly understood
Because it’s rare, little-known and poorly understood even among medical specialists such as rheumatologists, palindromic rheumatism can also take a long time to be diagnosed.
Anna-Marie Jones from Cardiff was ill for around 18 months before her condition was diagnosed 11 years ago. “I developed severe pain in my lower back and felt out of sorts. It got worse and worse, and I then developed short-lived episodes of peripheral joint pain, but the GP just said it was a viral infection or lumbago,” she recalls. “One of the problems though was that although I had flares that could last days, every time I had a test I wasn’t having a flare, so nothing showed up.” The condition was thought to be in her head
At one stage Anna-Marie saw a psychiatrist as her condition was thought to be in her head. (Other people with the condition have reported that they have not been believed by the medic, often causing them to doubt themselves. Confusing test results and fluctuating symptoms lead some to wonder if they are imagining their attacks.) But she persevered and finally was finally diagnosed by her current consultant rheumatologist.
Her problems didn’t end there, however. Treatment – mainly anti-inflammatories and a drug called
hydroxychloroquine, sometimes used to treat rheumatoid arthritis, didn’t effectively control her symptoms, and she was dogged by bouts of severe joint pain and crippling fatigue for a number of years.
“I wanted to take on a job but it was impossible because I never knew what was going to trigger it or how long it was going to last – maybe sometimes if I overdid it, I’d know I’d get a flare as a result, but generally there was no pattern to the flares,” Anne-Marie explains.
Despite her continuing ill health, Anna-Marie gave birth to a daughter, Lana-May, now nine, relying heavily on family and friends to bring her up.
Anna-Marie decided to fight against her condition
It was partly because of her daughter that Anna-Marie decided to seriously fight back against her condition.
“She came back from nursery one day with a picture she had drawn of me in bed, and she had explained to her teacher it was because ‘mummy is always in bed’. It broke my heart,” she says.
Anna-Marie started to volunteer with the Cardiff branch of Arthritis Research UK, and the charity’s then regional fundraising manager for South Wales, Fred Johnson, suggested that she investigate the possibility of going onto
methotrexate, a drug used in inflammatory arthritis, which works by damping down the immune system. At the same time Anna-Marie’s flares were getting longer and more painful, and her consultant agreed to try her on the drug.
That was three years ago and the change in Anna-Marie has been remarkable. Now 44, she’s a full-time regional fundraising manager for South Wales, and her symptoms are largely under control.
Not everyone is fortunate enough to find a drug treatment that works for them however, and many people with palindromic rheumatism can’t tolerate the drugs offered them, or have tried them to little effect.
Professor Alan Silman, medical director of Arthritis Research UK, admits palindromic rheumatism remains a baffling condition.
“The effects of palindromic rheumatism, in which attacks come mysteriously out of the blue and equally mysteriously settle down repeatedly over decades – can be devastating,” he says.
People with palindromic rheumatism get a raw deal
“It’s clear that a lack of research and evidence-based knowledge has given people with palindromic rheumatism a very raw deal. Patients can be brushed off, disbelieved or ignored by healthcare professionals, despite agonising symptoms that severely disrupt their lives.”
Leading consultant rheumatologist Paul Emery, Arthritis Research UK professor of rheumatology at Leeds University and a recognised expert in early rheumatoid arthritis, believes that palindromic rheumatism is a lot more disruptive to patients’ lives that is generally thought.
It’s crucial, he says, to be able to predict which patients will go on to develop longer, more serious flares, and those whose disease will remain mild, so that they can be treated accordingly. “It makes more sense to offer prophylactic (preventative) therapy for those whose disease is worse and to just treat acute attacks as and when required,” he says.
Rheumatologist and professor of clinical rheumatology at the University of Birmingham Karim Raza agrees, but adds it’s easier said than done.
Palindromic rheumatism is very variable
“One of the difficulties with palindromic rheumatism is that it is very variable – in one third of people it peters out, another third of people continue to have intermittent episodes and in a final third it develops into full-blown rheumatoid arthritis,” he says. “Despite the presence of certain antibodies in the blood in many of those likely to get rheumatoid, it’s still not always easy to identify which patients have a condition that will evolve into rheumatoid arthritis.
“But being able to identify these individuals is hugely important because they are the ones we would particularly want to treat with
disease-modifying anti-rheumatic drugs (DMARDs) to reduce the risk of the condition developing into rheumatoid arthritis. On the other hand, we would probably want to avoid drugs like methotrexate in patients in whom the disease was going to settle by itself.
Professors Emery and Raza have recently been awarded a special strategic £94,000 grant from Arthritis Research UK to carry out research to understand the underlying disease process of palindromic rheumatism. They are exploring if a combination of imaging, immunological, environmental and genetic biomarkers can be used to more accurately predict the diagnosis and the way the condition progresses, and are already making progress.
They are also planning to interview a number of patients about their experiences to explore the nature of the disease symptoms. The team are developing a palindromic research network, collaborating with patient partners, funders and clinicians from research centres in Leeds, Newcastle, Birmingham and Glasgow.
Frequent delays and inconsistencies in treatment
Professor Emery explains: “This research will provide us with a greater understanding of palindromic rheumatism from the patients’ perspective, particularly looking at how to manage symptoms. Given the nature of the symptoms of intermittent joint pain and swelling, often in cycles and often moving from one joint to another, there are frequent delays in diagnosis and inconsistencies in treatment.
We hope to improve both diagnosis and treatment
“Even though palindromic rheumatism has long been identified, very little research has been done in this area. If we can understand the disease process better, we hope to improve both diagnosis and treatment.”
He is optimistic that once more rheumatologists learn about ways of identifying and predicting disease severity, treatment will improve.
The research team are also confident that understanding more about palindromic rheumatism will shed more light on rheumatoid arthritis. “There’s clearly some kind of mechanism that leads to individual attacks of joint swellings within a few days or weeks,” says Professor Raza, whose team in Birmingham has devoted the past 20 years to investigating this area of research.
“So if we can harness the understanding of that ‘switching off’ process, we might be able to apply it to rheumatoid arthritis – a long-term condition which doesn’t switch itself off, and that could lead to new therapeutic approaches. That’s potentially very exciting.”
What is palindromic rheumatism?
It’s a form of inflammatory arthritis that leads to attacks of joint pain and inflammation. In between attacks, or flares, the joints look and feel normal.
People with palindromic rheumatism usually have no symptoms between attacks.
During an attack the joints involved are painful, stiff and swollen. Tendons may also be inflamed, painful and swollen.
Palindromic rheumatism gets its name from the term ‘palindrome’, meaning a word or phrase that reads the same forwards or backwards. A typical palindromic attack begins and ends in the same way, and is at its worst point in the middle.
From one room to another
Arthritis Research UK has a
patient information booklet about palindromic rheumatism and a report called ‘ From one room to another’ based on patient experiences. The report has thrown up a number of common themes. Overwhelmingly respondents want the medical profession and general public to have a better understanding of how the condition affects their lives.
They are also keen to know more about how palindromic rheumatism develops, what the future may hold, more practical advice on how to lead a normal active life, and for more research on medication developed specifically for palindromic rheumatism. The report, which includes many moving personal stories, provides a fascinating insight into the lives of people with palindromic rheumatism.
Anna-Marie is zipsliding from the Newport Transporter Bridge later in the year to raise money for Arthritis Research UK. You can donate to her through
www.justgiving.com/A-Jones Back to Winter 2015