From one room to another

The effects of palindromic rheumatism can be long term and devastating, yet little is known about it.

Arthritis Research UK has been talking to people who have the condition, which is characterised by excruciating flares in different joints that come and go. Their evidence, set out in our full report and highlighted in this summary, shows that when it strikes they also have to battle against a chronic lack of awareness, knowledge, information and understanding among healthcare professionals and the public.

From one room to anotherLiving with palindromic rheumatism

Left to their own devices, people conduct their own research, share symptoms through social media and come up with their own coping strategies.

Many suffer periods of depression as they grapple with a condition that attacks without warning and forces them to make big life changes – giving up work, hobbies and exercise, moving home, deciding not to have children and letting friendships go.

Even GPs who have palindromic rheumatism themselves have struggled to find information to help them diagnose and treat it.

It is clear that lack of research and evidence-based knowledge has given people with palindromic rheumatism a very raw deal.

We hope the evidence we have gathered, in advance of a further clinical study, will begin to redress the balance for all of them.

This is a summary of our findings. The full report is available on request by emailing [email protected]

Nearly 200 people have contributed to our study. A lucky few say they got the diagnosis and care they needed straight away. But time and again they tell the same story of being brushed off, disbelieved or ignored by healthcare professionals, family, friends and/or work colleagues, despite agonising symptoms that severely disrupt their lives. Even sympathetic doctors are baffled by tests that come back negative and symptoms that come and go or move around. The condition often goes misdiagnosed or undiagnosed for years, even decades. Reading these stories, it is natural to assume there are still many undiagnosed cases of palindromic rheumatism out there.

Those lucky enough to get a diagnosis then face a dearth of information about how to manage their symptoms, what treatments they can try and what to expect in the future. It is widely assumed that a significant proportion will go on to develop rheumatoid arthritis (RA), but patients are not given evidence-based information, so fear and uncertainty about the future often accompany their diagnosis. Many say they have no chance to discuss their symptoms and treatment options in any depth with their doctors and rheumatologists.

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From one room to another: living with palindromic rheumatism

This survey was commissioned by Arthritis Research UK with funding from an anonymous charitable trust. © Arthritis Research UK 2013Published December 2013Report by Word Doctor www.worddoctoronline.com

What is palindromic rheumatism?

Nina’s* story

In the last year, 45-year-old Nina’s life has changed out of all recognition. She has a hectic life looking after her children, who have complex needs, and also running a cake-making business. She suddenly began experiencing excruciating pains in her joints on one otherwise ordinary evening. Ever since she has been on a chaotic journey. ‘From that night onwards it’s just been mad,’ she says.

Luckily she got a speedy diagnosis of palindromic rheumatism, but even so she feels isolated. There is so little information available, and she doesn’t know of anyone else who has the condition. Even her GP knows nothing about it, and some of her friends insist it must be something else that they have heard of, like fibromyalgia.

She’s been taking disease-modifying drugs for just a few weeks and is suffering side-effects that include loss of appetite, weird dreams and extreme exhaustion. Sometimes when she sleeps during the day she feels almost like she’s in a coma – her mind is active and she can hear her family talking but her body is too deep in sleep for her to wake up and tell them. The drugs have not yet made any difference to her flare-ups. They feel, she says, ‘like a million daggers going into one joint – an unbelievably excruciating pain’. And they can come on without warning, just like the first time.

But Nina has adapted her life and still manages to find ways to look after her children and to bake cakes. She remains positive. ‘The more you know, the more you can face it and deal with it and fight it. It knocks you sideways a bit for a while as you try to work it all out. But I will fight and conquer it.’

* Our case studies do not use respondents’ actual names

Note

The evidence in this summary report is given by people who have been diagnosed with palindromic rheumatism, and whose experiences, opinions, recollections and attitudes may vary. It is entirely anecdotal, and often presented in people’s own words.

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Palindromic rheumatism is a rare form of inflammatory arthritis characterised by multiple flares of joint inflammation. Flares can happen quickly, move from joint to joint, last for varying periods of time, cause varying levels of disruption and come and go, hence its name from the Greek ‘palindromos’, meaning running back again or recurring. In many cases, palindromic rheumatism has been seen to precede other diseases, such as lupus, Wegener’s granulomatosis and rheumatoid arthritis. Yet anecdotal evidence suggests it is often undiagnosed or misdiagnosed.

Even with a diagnosis there is very little information about palindromic rheumatism. Treatment options and advice are rare too, due to the lack of research available. By every measure, support for people with palindromic rheumatism is very limited.

This summary report is about their experiences, and to emphasise that, we have used a striking comment from one of our research participants for our title. The onset of palindromic rheumatism is, she says, like walking from one room into another.


Glossary of terms

• RA: rheumatoid arthritis• PR: palindromic rheumatism• NHS: National Health Service (in the UK)• GP: general practitioner (primary care

doctor)• UTI: urinary tract infection• RSI: repetitive strain injury• A&E: accident and emergency unit

(hospital)• ESR: erythrocyte sedimentation rate

(test to measure inflammation in the body)

• ECG: electrocardiogram (test that measures electrical activity of the heart)

• CCP: anti-cyclic citrullinated peptide (test for antibodies that indicate the presence of RA)

• NSAIDs: non-steroidal anti-inflammatory drugs

• DMARDs: disease-modifying drugs• MS: multiple sclerosis• ME: myalgic encephalomyelitis (chronic

fatigue syndrome)• OT: occupational therapist• IPRS: International Palindromic

Rheumatism Society• RH factor: rhesus factor (level of protein

in the blood)• CRP: c-reactive protein (a protein in the

blood, the levels of which rise when there is inflammation)

Thank you

Arthritis Research UK would like to thank:

• all the people who took the time and trouble to respond to our survey and to share so much about their palindromic rheumatism stories in order to increase knowledge and help others

• the anonymous charitable trust that funded the programme of work on palindromic rheumatism, of which this report is a part

• Jude Irwin of Word Doctor (www.worddoctoronline.com) for her excellent work conducting interviews, analysing responses and preparing the report and this summary.

‘The onset was so sudden – it was like walking from one room into another...’

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Gathering information Most respondents wanted to talk about their condition and were grateful to be asked. Most were UK-based. Some were from overseas, and a few had experienced medical systems here and abroad. Ages ranged from 20s to 70s. Some people were very sporty and active, others less so. Occupations ranged widely from manual to desk-based and a reasonable number of respondents were healthcare professionals themselves, from nurses and GPs to NHS managers.

Who responded

Most respondents (84.5%) were women, with only 31 men getting in touch. This does not necessarily mean the disease is less prevalent in men. It may simply mean fewer men found the survey or wanted to fill it in.

What we did

We used three methods to capture information from people with palindromic rheumatism:

• a survey they could fill in on the Arthritis Research UK website, or by post

• in-depth telephone interviews with a sample of questionnaire respondents

• in-depth written questionnaires filled in by some respondents.

How many responded

Expectations about response rates were low, due to the unresearched nature of the disease and the fact that it is difficult to diagnose and its prevalence is not known.

We used a range of methods to try and reach people who had a diagnosis, including:

• articles in Arthritis Today magazine and on the Arthritis Research UK website

• a social media campaign• press releases to various publications• bulletins to GPs and rheumatologists• a request to palindromic rheumatism

bloggers to spread the word.

The response has far exceeded expectations. At the time of writing 196 people had completed the online and postal surveys in the four months to July 2013, and responses are still coming in at a rate of around 17 a month. Of the 196, we interviewed 24 in depth and a further eight completed more detailed written questionnaires.

What our survey said

Findings from the online and postal survey

Many more respondents are continuing to complete the survey, but this summary focuses on the responses of the first 196 people who responded, including:

• 31 men• 165 women• 133 people based in the UK.

Sometimes percentages do not add up to 100%, because some questions were unanswered or because people supplied multiple answers.

Age of onset

The optimum age for onset of palindromic rheumatism seems to be in early adult to mid life, with first flares occurring most often for people in their 40s (26%). However, some of our online respondents say they had symptoms as children (0.5%). Some of our interviewees also report having childhood symptoms, which went unrecognised at the time. A very few others did not get symptoms until they were in their 60s (7%) and 70s (1.5%)

Source of diagnosis

The vast majority of people (93%) get their diagnosis from a specialist, rather than their GP.

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Time waited for diagnosis

For most people, diagnosis does not come quickly. Nearly a quarter (22%) do get a diagnosis within a year, but nearly half (44%) have to wait between one and five years, while 29% wait longer than that. Some report going undiagnosed or misdiagnosed for well over 20 years, in some cases as long as 40.

Joints affected

Hands (including fingers) and wrists are the primary locations for attacks (91% and 89% respectively), closely followed by shoulders and knees (each 77%), feet, including toes (76%), elbows (62%) and ankles (61%). Hips, neck and back score 55%, 42% and 32%.

One respondent in the interviews mentioned that she has flares in her jaws. Following this, we asked all other interviewees if they have jaw flares. Of the 24 questioned, 50% said they have experienced flares in their jaws. This is a much smaller sample than the 196 respondents to the online and postal survey, but since the survey did not provide this category it may be worth noting.

Drug treatments tried

Most people have tried non-steroidal anti-inflammatory drugs, such as ibuprofen (57%), diclofenac (32%) and naproxen (41%) and others (8.5%) with varying degrees of success and different experiences of side-effects. Nearly half have tried analgesics such as paracetamol (47%), paracetamol/codeine (44.5%) and others (7%). In terms of disease-modifying drugs, over half have used hydroxychloroquine (56.5%),

Many report GPs attempting to make a diagnosis, but only 4% successfully diagnosed palindromic rheumatism. GP interviewees who have the condition themselves report being baffled by their own symptoms and then facing a lack of information about it.

while only 21% have used methotrexate and 20% sulfasalazine. COX2-NSAIDs are used by 7%, and biologics by 2.5%. Other drugs mentioned include steroids such as prednisolone (12%).

Alternative therapies and lifestyle changes tried

Over half of respondents (57%) say they pace themselves in order to manage their condition. Some use or have tried herbal remedies (14%), yoga or Pilates (11%) and meditation or mindfulness (10%). Only 7% modify their diets and 6% use pain management clinics. A very few (less than 5%) use or have tried other solutions, including antibiotic treatment, water therapy, acupuncture, joint protection programmes and marijuana.

Interviewees report a lack of support groups available to them and being given no helpful guidance on diet or exercise. Some try elimination diets or the introduction of elements such as Jewish chicken soup. Mindfulness meditation courses have helped some come to terms with their condition and feel more able to cope with it.

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‘...it’s very rare for someone to take an interest...’


A number of strong inter-linking themes and sub-themes emerged during the interviews and from analysis of the online and postal survey results. In the following pages we have used case studies and direct quotes from the interviews to illustrate these themes.

The interviews

Themes

Experiences of the healthcare system

• the difficulty in being believed, often causing people to doubt themselves

• tests and communication of test results• the difficulty of getting a diagnosis, the

number of misdiagnoses and the length of time people wait for their diagnoses

• varying experiences of primary care and care in rheumatology departments

Managing palindromic rheumatism

• attitudes to and impact of medication• the use of alternative therapies and lifestyle

changes, such as diet and pacing oneself• the development of coping strategies

How palindromic rheumatism affects lives

• the life-changing nature of the condition• coping with the emotional impact of

unexpected change, worries about the future and the possible links to other conditions

• the implications for work and benefits• lack of information or advice generally and

inadequate knowledge and understanding among healthcare professionals and others

What palindromic rheumatism is like

• the sudden onset of symptoms for many people, whether for the first time or each time a flare happens

• the severity of flares and where they strike• the triggers and warning signs• living with extreme fatigue

What needs to be done

• raise awareness among the public• increase knowledge among health

professionals to minimise likely current levels of under-diagnosis

• provide better information about managing the disease day to day

• provide research-based data about outcomes for people with PR

• develop treatments designed specifically for PR

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Sudden onset

Most people say they were completely taken by surprise by their first palindromic rheumatism episode. Some woke up in the middle of their first attack; for others the flare came on unexpectedly while they were at work or home doing their normal activities.

The flares

Attacks are different for different people and at different times. But everyone experiences intense pain that moves from joint to joint and then subsides. Flares can last anything from minutes to months, with similarly short or long periods of respite between them.

Triggers and warning signs

Some people say they can never tell in advance that they are going to have a flare and can never identify any trigger for their flares. Even those who keep diaries can find no pattern. But others do identify definite triggers, such as overdoing it, weather changes, repetitive movements and stress.

Fatigue

Many respondents talk about the extreme fatigue that seems to be part of palindromic rheumatism for them. For some it is the result of lack of sleep during flares, but for others it is an ongoing sense of being utterly drained of energy, which often forces them to sleep during the day. People around them tend not to understand the level of fatigue, or how it can impact on their ability to do things.


• In the middle of the night, an excruciating pain in my left shoulder made me cry out in my sleep, waking me and my adult daughter sleeping in the next room.

• You never know when it’s going to happen – I’ve been able to get on a bus and then not get off and have had to stand and wait for someone to come and get me.

• The attacks are completely random. I can’t find any food link or any link to anything I’ve done.

• Some flares cause me pain to the point where I am crying for 18 hours. It hurts when I breathe.

• I can’t plan anything. I could do something now, but in half an hour I might not be able to.

• First my shoulder felt like someone was ripping it out of its socket. Then it went to my hand.

‘...it completely took over and there’s just no going back...’

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• The pain levels vary from 1 or 2 to 10 – the latter are every three or four months. Every month I get flares at level 7 or 8. I’ve got some pain around a third of the time, maybe a bit more.

• Everything is so difficult, and not just because of the flares. You feel like you’re wading through mud. It’s real exhaustion, your limbs feeling heavy, like your body weighs 20 more stone than it does and everything’s too hard to do. People just think I’m being lazy, but I’m not.

• A flare can come on in ten minutes and even go in ten minutes. On average I have ten days of pain a month.

• Getting a bad cold or flu seems to cause a temporary remission.

• It was like someone hitting my wrist with a sledgehammer and if you’d touched it with a feather it would have been horrific.

‘...I got up and fell down because of the pain...’

Sophia’s story

Sophia, 41, is managing director of a growing international company that she has built from scratch. Hers is a high-profile, hands-on job that involves a lot of travel and detailed input.

A year ago she began having unusual symptoms. ‘I started getting really angry all the time and losing my temper – this is something I hardly ever do,’ she says. ‘I also had horrific headaches.’ Her GP diagnosed depression and began treating her for that, but things got worse. ‘I started getting odd symptoms – one-day wonders I called them – like mouth ulcers, cystitis or horrific shakes in one hand so I couldn’t hold a cup. ’ Finally, Sophia was struck down with pain all over her body and couldn’t get out of bed even to go to the bathroom.

Her GP thought it was reactive arthritis, as did the private rheumatologist she consulted. After tests, the consultant diagnosed inflammatory arthritis and then eventually palindromic rheumatism.

Now Sophia is trying to accommodate her condition while staying active in her business, despite having days when she can barely walk from her car to her front door. She has just started medication and is waiting for it to take effect. She believes her palindromic rheumatism all stems from a norovirus that she ignored, damaging her autoimmune system. Her consultant wants her to take a long rest, but her instincts push her on. ‘You can’t rest when you’re meant to – you have to go on. I’m always a fighter in everything. My work colleagues sometimes see the pain in my face and I’m embarrassed and try to laugh it off. I have to be able to function, drive, be visible, support people.’

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Medication

Both attitudes and reactions to medication vary, with some people reporting dramatic changes in their lives due to drug treatment, while others cannot tolerate the drugs they have been offered or want to put off using them, or indeed have tried them to little effect. There is a great deal of natural fear, partly because the drugs available are those used to treat rheumatoid arthritis rather than being specifically designed for palindromic rheumatism, and partly because the short and long-term side-effects can be aggressive. Others are happy to take the drugs available, accepting the risks in order to improve their quality of life.

Alternative therapies and lifestyle changes

With very little guidance to help them manage their condition, respondents do what they can to seek relief. Many have tried various physical activities, such as yoga and Pilates, or adjusted their mental approach through mindfulness and meditation. Some try acupuncture and acupressure or herbal remedies and dietary experiments. Respondents report widely varying results, from no impact to a perceived impact. Acceptance through mindfulness seems to be a powerful tool for those who try it.

Coping strategies

In order to cope with attacks, which may or may not respond to medication, people have developed strategies to ease the pain. Applying heat and cold, movement, stillness, relaxation and a positive mental attitude are all cited as beneficial. Many people mention getting a great deal of support from other people with palindromic rheumatism through a Facebook group, where they can share information about symptoms and treatments.


• I did a mindfulness-based programme for people with chronic illness. It doesn’t make the pain go away, but it helps you cope.

• Everyone wants to share their miracle cures. I had to change my dentist because I got sick of him recommending a type of vinegar.

• Now that I’m on drugs I’m taking full advantage of the new life I’ve been given. I feel like a new woman. I’m no longer afraid to sit in a chair in case I can’t get up. But there are fears about going blind with the Plaquenil and meloxicam.

• Methotrexate has terrible side-effects and I can’t put myself through that unless I really have to. I will take it as a last resort.

• The best advice was to just keep on taking the tablets. It’s terribly important to feel you’re in control, even if it doesn’t work.

‘...it’s all down to me to work it out for myself...’

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• Without the treatment I’d be disabled.

• I’m starting to feel better on the drugs and to have four days without pain has been fantastic.

• I’ve tried acupuncture, but it wasn’t successful.

• Yoga is good for the body and mind but doesn’t help a flare.

• I tried steroids at first to give my immune system a boost and that helped. Sulfasalazine has stopped the major issues.

• It used to distress me a lot more, but now I understand that however long it takes it will stop and things will go back to normal.

• My body kind of changed my diet for me. I was craving fruit and other things - bananas, sunflower seeds, avocados and beetroot.

Helen’s story

Helen, 27, is a learning and development manager, who got her diagnosis of palindromic rheumatism at the age of 25. For her, the flare-ups began suddenly in her hands. Simple tasks she would normally take for granted became impossible.

Her GP and her company doctor both thought she had RA. Then a rheumatologist diagnosed palindromic rheumatism – but only after she applied some pressure.

‘I had blood tests, which were negative, and I had to ask for another appointment. He said he didn’t think I had RA, but he didn’t know what it was. I’d started to take pictures of my joints during flares, so I could prove there was a problem, and he diagnosed palindromic rheumatism based on my symptoms alone. He said there isn’t much known about it and the only way to deal with it is to take medication – for him it’s as simple as that. He issued me with drugs that day.’

The doctor did not warn Helen about what to expect from the medication, and she had extreme side-effects at first. ‘I had the worst headaches ever, felt nauseous, had sickness and diarhoea, dizzy spells with the room spinning and vivid dreams. My GP said to stick with it and go back after a few months if the effects didn’t settle down. I found out if you don’t take it with food it can really upset your stomach, which I hadn’t been told. It really helps a huge amount to know what to expect, so it’s worth doctors going through the side-effects.’

Thankfully, the drugs are now taking effect for Helen. ‘I still get flares, but they are less severe. I have more dexterity and don’t feel so disabled.’

‘...I am trying oil pulling – desperation is a curious thing...’

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From one room to another: living with palindromic rheumatism11

Being believed

Many people – though not all – describe not being believed by their GPs, rheumatologists, or other healthcare professionals. Some have had positive experiences, even with doctors who admit having no clue what is wrong, but for many the lack of awareness among healthcare professionals is a major problem. Confusing test results and symptoms that move around and fluctuate in intensity lead some to wonder if they are imagining their attacks, despite their severity. Disbelieving employers, workmates, friends and family all add to the difficulty, prompting some people to simply stop seeking help.

Tests and test results

Often people report having blood tests that show their rheumatoid factors to be normal, while others have high rheumatoid factors but no joint damage. Lack of awareness about the tests available is seen as a barrier to getting a diagnosis.

Getting a diagnosis

Getting a diagnosis has been difficult for many respondents. Some have waited decades, sometimes being treated for other conditions instead. Others only find out by chance what their diagnosis is, because their doctor has not told them. For some people their experiences have eroded their trust in the healthcare system. For almost everyone it was both a relief and a vindication to have the cause of their pain and discomfort finally explained.


• The GP said it was depression and put me on a weekly visit to keep an eye on me. They offered counselling and pills. They kept putting me on different pills for my head.

• My manager said I couldn’t have arthritis at 24.

• I don’t know what’s worse – the pain, the fact that no one understands or that some doctors think it’s all in your head.

• My blood tests have always been negative so doctors said it was in my mind. The first who thought it should be properly investigated said I had RA, yet the tests came back negative again.

• Sometimes I thought I was crazy.

• I definitely had inflammation, but the pain was disproportionate to what you could see. Even for me as a GP it was hard to diagnose.

‘...I was quite high when I finally got the diagnosis – in a way I was delighted...’



• I asked for a rheumatoid factor test because my granny had rheumatoid arthritis. It came back negative. I went back and insisted on a referral. More tests came back clear. Then I had an x-ray and I cried when that showed nothing.

• The great relief was being told it wasn’t in my mind, I wasn’t imagining it.

• As a GP I tried to work it out myself, then I went to my own GP. He did some blood tests and didn’t know what it was either.

• It moved from joint to joint and I’d be limping with one leg in the morning and the other in the afternoon – I thought people must think I was faking. I did wonder sometimes if it was all in the mind.

• If I’d seen one particular doctor in my practice I know I wouldn’t have got anywhere.

Bridie’s story

Bridie is 66 and lived with undiagnosed palindromic rheumatism for well over 20 years until it was diagnosed last year. Bridie was working as a care assistant in the US when her flare-ups first started. At first, she put them down to the lifting she did at work, but was puzzled by the fact that the pains moved from joint to joint.

Successive GPs simply brushed off her symptoms because they’d never heard of pain that moved around. ‘I’ve had five children and I have a high pain tolerance, but some of the flares had me almost in tears,’ says Bridie. ‘My family didn’t get it – they just said I was always doing something. But I’m not a complainer. I’d just say I must have banged it.’

For years, Bridie had various diagnoses when she sought help for particularly severe flares, including a torn rotator cuff, a torn meniscus and a muscle problem. Finally, she went to a rheumatologist recommended by a friend, and he diagnosed her with palindromic rheumatism straight away.

‘He was like an angel from heaven. He listened for about 40 minutes and said he thought he knew what it might be. He ran blood tests and called me in a couple of days to confirm the diagnosis. It felt amazing. Out of all the people I’ve seen over the years he’s the only one who has understood what I was going through.’

Bridie is on medication and feels like a new woman, though she is worried about the toxicity of the drugs. ‘I have not had a flare since the day before I went to see him, and I can almost run now. I’m no longer afraid to sit down in case I can’t get up.’

‘...she didn’t give me the diagnosis – I found it in my notes...’

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Primary care

People’s experiences with their GPs vary widely, with some feeling very supported, while others end up enduring debilitating symptoms for decades because they are not taken seriously at primary care level. The speed of referral to rheumatology units seems to vary depending on the GP and the locality, with people in extreme pain waiting anything from a few weeks up to two years or more. Some have resorted to private healthcare in order to see a specialist. Once palindromic rheumatism has been diagnosed by a consultant, many GPs have told their patients they have never heard of it. Some – but not all – then go on to learn more about it so they can support them. One GP who has palindromic rheumatism herself says the problem lies with GPs, because it is not something they deal with very often, and there is limited information available.

• I got to the stage where I thought it just wasn’t worth mentioning.

• It would be quicker if they admitted they don’t know and sent you to an expert who might be able to help, but not all GPs will do that.

• I kept going back and saying I still had pain. After a year I was referred to a rheumatologist.

• In this area, anyone with swollen joints is seen by a rheumatologist within a fortnight.

• My GP said right at the start that he liked a challenge, so I always knew he wouldn’t give up until he’d got to the bottom of it.

• Eventually I told my doctor to give me Plaquenil or I’d hang him from the roof by his heels.

• I had a bad flare and couldn’t even dress myself. My wrists, hands and knees were swollen. I had splints for my wrists at night. I didn’t sleep, I had to sit up at night. I asked if I could see a rheumatologist but I couldn’t get an appointment for five weeks, so I had to go private – I couldn’t stand the pain any more.

• Unfortunately some doctors get very shirty. When you see them the flare has gone or they say the blood tests are negative, so you give up.

• If your GP doesn’t believe you it can take a long time to get referred. There needs to be better education for the medical community.

• As a GP I can say the problem lies with GPs – it’s just not something you deal with very often.

• I feel unsupported by any healthcare professional I have seen.

‘...with every doctor I go to I have to provide proof of my condition...’



• My GP did exactly what she was supposed to do and put in a quick referral, saying it was suspected RA, so I got seen very quickly.

• I want to go and give my GP a presentation. She doesn’t get it, even now I’ve been diagnosed. If it feels so bad, why don’t they want to get to the bottom of it?

• She said there was nothing showing up on my blood tests so she got me an appointment with a consultant very quickly and gave me some anti-inflammatory tablets to take and some cream. She also suggested I use ice packs. She very quickly had a brainstorm with the others in the practice. They agreed they had to get me to a specialist straight away, rather than see me suffering for any longer than I needed to.

• I went to several GPs over five years and they just brushed it off, saying, ‘Yeah, that’s weird.’

‘...GPs’ hands are tied depending on what the rheumatologist says...’

Rosie’s story

Rosie, 63, is a cathedral manager. She began having symptoms in her early teens, but it was 45 years before she got a diagnosis of palindromic rheumatism. ‘The great relief was being told it wasn’t in my mind – I wasn’t imagining it,’ she says.

Rosie remembers an episode when her fingers and toes flared up as a child. At the time, it was put down to chilblains. ‘But it wasn’t that. I now wonder if it was the beginning of something.’

All through her teens and adult life she has had swollen, painful joints for periods lasting from hours to months at a time. But her blood tests always came back negative, so GPs and rheumatologists always told her the attacks were in her mind. ‘I began to think it really was in my mind. Every time I got a flare-up I got to the stage where I thought it wasn’t worth mentioning. With no explanation I just had to get on with it. Anti-inflammatories didn’t work, so I developed quite a bit of stoicism.’ Eventually, after she had developed osteoarthritis and was seeing a rheumatologist for that, she described her flares again. The consultant immediately diagnosed palindromic rheumatism.

Rosie thinks it’s very hard for people who have no diagnosis because their tests are negative. ‘Once you have a reasonable explanation you can set about learning how to manage your symptoms.’ For Rosie, that involves hammering the pain with steroids when she gets an attack and warning people she might be grumpy when she’s had no sleep. ‘My condition and I have a good battle every so often. I accept it and I know what to do. You can control the symptoms when a flare happens – you just can’t control when it will happen.’

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Rheumatology care

Many – though not all – respondents express a lot of dissatisfaction with the way they are treated in rheumatology units. The lucky ones are seen quickly and feel they are listened to and involved in their treatment. Others report being kept in the dark and/or being treated insensitively. They also say there is a lack of understanding or concern about the impact of the condition and its treatment, and occasional disbelief in its existence. They are not listened to when they have information to share about their symptoms or concerns about their treatment. Many find it difficult to see a rheumatologist, even when in debilitating pain, and some have resorted to private care.

• She said it was palindromic rheumatism straight away and explained that my GP wouldn’t know, as it’s a rare condition that only specialists are likely to spot. She’s very good and she listens.

• I looked at the side-effects and potency of the different drugs and started at the bottom and worked up. My rheumatologist put them in order and I did my own research.

• He told me off and was extremely rude. He was an old-style, upper class expert who said lots of people wait months before they get a referral and what was I fussing about? He told me not to eat cream cakes and get fat.

• There’s an option to ring if you need help between appointments, but when I tried it I found it wasn’t easy, so it’s not very helpful.

• He never refers to palindromic rheumatism and I’ve got a feeling he doesn’t really believe in it.

• I asked him for information on how to manage it, but I didn’t get anywhere. He said this is what you’ve got, there’s not much known about it and the only way to deal with it is to take medication – it’s as simple as that. He issued me with medication that day.

• In the UK you only get about seven minutes, so you never get any feedback – they don’t even read your notes half the time. In the US they are a lot more understanding and take as much time as you need.

• I’ve met some fantastic, lovely, caring people along the way – it’s not all anger. For courtesy, respect, kindness, the whole NHS scores 90 per cent, but at the top end, where it really matters, it’s not good at all.

• I’m going to make a real effort to educate him. I’m hoping we can give him some good information with this survey.

‘...no one ever asks about the impact this has on my life or how I manage...’



Jenny’s story

Jenny, 60, is a staff nurse. She had her first palindromic rheumatism flare at work 17 years ago. It proved to be the first of many, but Jenny didn’t get a diagnosis until last year because her test results did not give a clear picture.

After the first couple of flares in her wrists, blood tests showed a positive rheumatoid factor. But her rheumatologist found no joint damage. A while later she had another flare in her knee at work, so she went to see him straight away and he gave her an injection in the joint. After a couple of years he discharged her, because he did not know what was wrong. ‘I appreciate if you don’t know what someone’s got it’s difficult to treat them, but it made me feel so alone,’ says Jenny. ‘I just got on with it until, finally, I got another flare in my wrist and the pain was so bad I had to take a week off work. I had more tests and my rheumatoid factor was in the 400s, where it should be below 20.’ At this point Jenny got her diagnosis at last. ‘I was relieved to finally know why this is happening. When all the blood tests were coming back positive but my joints were fine I wondered if it was just my imagination. I had this bizarre tiredness too, and put it down to the menopause.’

Jenny is not taking medication for now as she wants to avoid the side-effects. She’s decided to retire early, despite the financial implications. ‘I don’t want to end up with severe RA and never having had a retirement. Of course that may never happen, but my mother had it and my brother has too. I’m staying positive though – you have to. I found it tough being discharged without a diagnosis, but now I know what’s going on I can accept it.’

• He said it was palindromic rheumatism straight away, and it would go to RA. He sends me for scans on my hands every year.

• They’ve never asked how I’m coping with the children. It never occurs to them and then they wonder how people with long-term conditions get depression.

• This NHS time thing is hopeless – I’d rather wait longer and have more time so the appointment has some value. In some places you only see a consultant once a year, others it’s twice. And the tie-up between hospital and doctors seems to be a bit loose – they don’t seem to know what is going on. You feel quite insecure and are forced to find out a lot of information yourself – and that can be dangerous.

• I kept a record of my flares and he didn’t want to see it. You feel they think it’s all in your mind.

‘...I am the one finding links to give him to suggest treatment...’


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Impact on daily life

There is no question that palindromic rheumatism can have a dramatic impact on people’s lives. Most of the people we talked to have had to adapt or change their normal behaviour, cut down on or cut out hobbies and reduce or stop exercise. Relationships inevitably change as their abilities change. They often have to plan ahead and pace themselves if there is something they want to do, fearing a flare will stop them.

Emotional impact

Many respondents struggle to deal with emotions such as fear, isolation, confusion, frustration, embarrassment, depression and distress. Many say their confidence has been knocked, and some have felt like giving up. There are also examples of great determination, positivity and grit.

Possible links

Many people talk about medical episodes, lifestyle choices or incidents in their past that they suspect might be early indicators or triggers for their palindromic rheumatism. Some also have other conditions, such as autoimmune diseases or allergies, that developed before or alongside their palindromic rheumatism. Some women cite the hormonal changes around pregnancy, giving birth or the menopause as a factor. Many focus on the possible link to rheumatoid arthritis, speculating about whether they will get it. Some people say there is RA in their family, while others say there is no such history. Some already have RA alongside their palindromic rheumatism.


• I used to walk eight miles easily but I couldn’t do that now.

• I’ve found who my friends are, and it’s very few.

• I’ve had to give up almost everything social.

• I’ve spent a lot of time crying because of the pain and not wanting to carry on and not being able to do things with my kids. I get to the stage when I can’t even do the washing up, or get in and out of the bath.

• It’s taken over my life. I still have all the ideas, but I can’t carry things out any more.

• I’ve learned coping strategies, but the thought of my kids going through it is terrifying.

• People lose patience with you. In a way they’ve lost their original friend. I’m not the same.

‘...when I tried to breast-feed, my husband had to hold the baby...’



• I can’t work problems out any more because of the tiredness, so I will have to look for a job where I don’t have to think. Not being able to think straight is really breaking my heart.

• I’m not a weakling. I don’t let it take hold of me – I’m not ill in my head, so I won’t give in. The effort to get out of bed in the mornings is huge but I force through the desire to sleep.

• This condition developed in a year when I ended a long-term relationship. I believe it’s not uncommon for autoimmune diseases to kick in during times of change.

• I had a big flare-up when I was 11. They said it was chilblains but it wasn’t that. I wonder if that was the beginning of something.

• I have had all kinds of allergies since reaching adulthood – skin, food, chemicals, plants, animals of every kind, even all insects.

‘...there’s no family history of RA, so where did it come from?’

Kate’s story

Kate, 43, is a quality officer. Everything changed for her when her daughter was born 12 years ago. ‘During labour she wasn’t breathing and had to have an operation,’ recalls Kate. ‘She had a very complicated start with no end of tests. We stayed on a camp bed in the hospital for 12 days and when I got home I had pains in my knees and hips, which I put down to the camp bed. But within days every joint was in pain and I was hospitalised.’

Kate saw a rheumatologist in hospital, who thought her daughter had passed on an infection, leading to reactive arthritis. The worst case scenario was that it would last six months, but Kate still has attacks 12 years on and has recently been diagnosed with palindromic rheumatism by the same doctor.

In practical terms the impact of those first flares was devastating. ‘Once I got home from hospital it was just a young baby and me. My husband took unpaid leave to help, but when he went back to work I couldn’t look after her myself and social services were brought in. I was terrified my daughter would be taken away. I was desperate to look after her, but I just couldn’t do it, which is an indication of the extent of the flare-ups.’

Over the years, there has been an emotional impact for Kate too. ‘I have suffered depression. When I have a particularly long flare I am limited in what I can do. I can’t read a book or do my hair and after a time that brings me down. It used to distress me a lot more but now I understand that however long it takes it will stop and things will go back to normal. When I’m feeling okay I don’t dwell on it too much. It’s taken me a while to get to this point.’

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Work and benefits

Respondents report a range of issues around work and benefits. Some employers are understanding and supportive, while others are sceptical about the disease and not willing or able to adapt. In some cases people have had to give up their jobs because they are physically unable to do them any more. Others have reduced their hours or changed their jobs. Benefits agencies seem to have no understanding or knowledge of palindromic rheumatism, if our respondents’ experiences are anything to go by. One who is no longer able to work because of her condition was told it is non-disabling, so she was deemed fit to work.

Inadequate knowledge/information

People are left to their own devices to find out about palindromic rheumatism, with GPs and even rheumatologists apparently having little or no information to give them. Several get a diagnosis and nothing else, while some are given information about rheumatoid arthritis. They need information about causes, looking after themselves, treatments and their side-effects and how it might progress.

• It is difficult to get any benefits. You can’t explain that 90 per cent of the time it’s fine but the other 10 per cent it’s hell.

• I couldn’t hold down a full-time job because I can’t predict when I’ll be well enough to work. As a freelance I manage my time and workload.

• I’d been getting heaps of work but I went from that to nothing because I couldn’t work.

• I’d have to explain there might be days I can’t work. I’ll never get a job that way.

• I went to the bottom of the heap.

• My manager gave me access to my emails so I could work from home during a flare. This was not exactly an appropriate response, given that my flares affected my hands so badly.

• I agreed with my employer that if I got it under control I’d go back, but I have never managed.

• When I applied for disability benefits there were three doctors. They hadn’t heard of palindromic rheumatism .

• I will try to extend my working life as long as I can. It’s very hard as my husband’s job has gone belly-up because of the recession.

• My employers have spent a lot of money on equipment, software and training to allow me to work from home, based on what I’ve said. But what will it look like if my rheumatology reports say there’s nothing wrong?

‘...I’ll have to stop my masters. I can’t do that and work, because I’m so tired...’



• My rheumatologist didn’t have any information to give me, but she told me I was perfectly capable of managing my symptoms.

• I found out about the drugs myself and I found out about the condition myself. I read up whatever I could find.

• We need more information about the fatigue and how to cope with it. A lot of information is more about the illness than the person and the impact it can have.

• I was left to come home and go online to find out what on earth it was.

• If people know about CCP tests they can ask for them – their GP might not know of them.

• I have read what other people have written in blogs. This can be counter-productive sometimes – it depends where you look.

‘...because my GP had never heard about it I felt alarmed and wanted answers...’

Jean’s story

Jean, 56, has been forced to give up her job as a cook because of her palindromic rheumatism. Luckily, she got a diagnosis quickly, but the impact on her life has been significant. ‘I used to work in a bakery and had lots of flare-ups,’ she says. ‘My hands were really bad and they thought I was accident-prone. I used to think I’d hurt myself. Then when I was diagnosed I went on the sick. I agreed with my employer that if I got it under control I’d be able to go back, but I have never managed. You never know when a flare is going to happen. I’ve been able to get on a bus and then not get off and have had to stand and wait for someone to come and get me.’

Jean has always worked, but now feels her condition makes a job impossible. At the same time, she’s unable to get much in the way of benefits. ‘They say it doesn’t disable you. There could be at least 15 days of the month when I’m not functioning and the other 15 days I try not to do too much so as to avoid getting the disabled days. I sit up all night to ease the shoulder pain, but people don’t understand because they haven’t heard of it. I went to a disability hearing and no one had looked it up or knew anything about it.’

Jean’s life has been curtailed in other ways too. ‘Cooking was my thing and I can’t do that like I used to. I don’t go out anymore. I went to my brother’s 40th wedding anniversary but I got there and had to come home. I am always thinking ahead if there is something coming up, planning what I can do to try and be fit enough to do it. My son is getting married next year and I will have to have two pairs of shoes in case I get a flare.’


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The research outcomes people want

Respondents are all very pleased that a study into palindromic rheumatism is being carried out. When asked what they would like to see as outcomes, they were very keen to know more about how palindromic rheumatism develops and what the future may hold. On a practical level, they want to know how to lead a normal, active life without having a negative impact on their joints. They want to see more research on medication specifically for palindromic rheumatism, and to have more information about the effects of the medication currently used. Overwhelmingly, respondents want the medical professions and the general public to have a better understanding about how palindromic rheumatism affects people’s lives.


• The clearer the picture the easier it is to tackle it. It would be good to know the causes. I’ve been told it’s not hereditary and there’s no RA in my family, but it would be good to know if there’s a weak gene or something.

• Hydroxychloroquine didn’t have proper trials in the past so it would be good to know if there is evidence to say whether it’s particularly helpful.

• I’d like to see how blood test numbers compare. My rheumatologist says my RH factor is way off the charts, too high to indicate RA. He says my CRP is also exceedingly high. I don’t know if that is normal with palindromic rheumatism.

• It would be good to have access to support groups online or in person.

• Almost what we need is a list of questions to ask your medical expert, ‘What can I expect, what should I do about this?’ Also, you go online and it says a third to a half of people with palindromic rheumatism go on to develop RA. That’s a very bald, frightening statement to make. Maybe it has to be said, but how much research is there behind that statement?

• It would help to know what the side-effects of medication are likely to be.

• As a doctor I need more information about treatments. Is there any real consensus on existing knowledge?

• I hope this research makes a difference to our quality of life.

• I’d like quicker diagnosis, research to find specific treatments and ultimately a cure.

‘...you just get given a consultant – are there any that specialise in this?’


Amanda’s story

Amanda, 57, is a GP. When she got intermittent pain and swelling in her hands she tried at first to work out for herself what was wrong, but couldn’t. ‘I went to my own GP and he didn’t know what it was either,’ she says. ‘I assumed it was a rheumatology issue because it was so disabling, but it seemed worse in many ways than what I’d seen with other people’s inflammatory diseases. I really couldn’t use my hands, but it was hard to convey this to others. The pain was disproportionate to what you could see. It was very difficult to diagnose.’

On being referred to a rheumatologist, Amanda quickly got a diagnosis of palindromic rheumatism. She set about trying to find out as much as she could about the condition, but with little success. She did a literature search, but the only medical paper she could find was written in 1981, and she still has many more questions than answers. ‘I don’t even know what the prevalence of palindromic rheumatism is. There’s not much information about treatments and I wonder how much consensus there is on existing knowledge. What is the natural course of it and what is the role of anti-CCPs? I know my levels have dropped, but I don’t know what that means. Everyone does the test but no one knows why. Hydroxychloroquine was recommended in the 1981 paper, but it didn’t have proper trials in the past so I’d like to know if there is any evidence to say whether it’s particularly helpful or not.’

For Amanda, the medication route is working well. ‘I asked for hydroxychloroquine and it has completely stopped the attacks. I’ve had no side-effects. I can’t believe how well it works. I’m going to try stopping it soon, to see what happens.’


• We need to educate the medical profession. All the statements out there should be looked at and proven.

• Research on treatments. It would be helpful if they could find out when it changes to RA, what might trigger that, and whether people can have both at the same time.

• There should be more about the amount and type of exercise you can do.

• The psychological impact of going into remission and not knowing how long it will last needs to be understood. Every time you get a bad flare after a remission it’s another loss, when you realise it’s still here.

• The medical profession needs to know this shakes your foundations emotionally as well as physically. You think how can it be that I can’t walk at 9am but by 6pm I’m dancing?

‘...you want to know what you can expect and what you should do..’

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From one room to another

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