living with palindromic rheumatism

196 Pages·2014·0.67 MB·English

From one room
to another:
living with
palindromic
rheumatism
Contents
• Executive summary 2
• Glossary of terms 3
• Purpose of this report 4
• Background 4
• Methodology 5
• Responses 5
• Type of respondents 5
• The interviews 8
• What palindromic rheumatism is like 9
• Managing palindromic rheumatism 17
• Experiences of the healthcare system 23
• How palindromic rheumatism afects lives 33
• What needs to be done 43
• Conclusion 45
• Appendices 46
This survey was commissioned by Arthritis Research UK
with funding from an anonymous charitable trust.
© Arthritis Research UK 2013
Published October 2013
Report by Word Doctor www.worddoctoronline.com
From one room to another: living with palindromic rheumatism
Executive summary
Palindromic rheumatism is a form of infammatory Left largely to their own devices, people conduct
arthritis characterised by multiple fares of often their own research, share symptoms with others
debilitating joint infammation that can move from through social media and come up with their own
joint to joint. The efects can be long term and coping strategies.
devastating, yet little is known about it.
Many sufer from periods of depression as they
The evidence in this report shows that chronic grapple with a condition that attacks without
lack of awareness, knowledge, information and warning and forces them to make big life changes –
understanding among healthcare professionals and giving up work, moving home, deciding not to have
the public simply adds to the trauma most people children, letting friendships go, giving up hobbies
experience when palindromic rheumatism strikes. and stopping exercise.
Nearly 200 people with palindromic rheumatism Even GPs who have palindromic rheumatism
have contributed to the report. A few have been themselves have struggled to fnd information to
lucky enough to get the diagnosis and care they help them diagnose and treat it.
needed straight away. But time and again they tell
the same story of being brushed of, disbelieved It is clear that lack of research and evidence-based
or ignored by healthcare professionals, family, knowledge has given people with palindromic
friends and/or work colleagues, despite agonising rheumatism a very raw deal.
symptoms that severely disrupt their lives. Even
sympathetic doctors are bafed by tests that come Arthritis Research UK hopes the evidence gathered
back negative and symptoms that come and go for this report, leading to a further clinical study,
or move around. The result is that the condition will begin to redress the balance for all of them,
often goes misdiagnosed or undiagnosed for years, now and in the future.
even decades in some cases. Reading these stories,
it would be natural to assume there are still many
undiagnosed cases of palindromic rheumatism
out there.
Those who are lucky enough to have 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 signifcant 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 rheumatologists.
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From one room to another: living with palindromic rheumatism
Glossary of terms Note
• RA: rheumatoid arthritis The evidence in this report is given by people who
• PR: palindromic rheumatism have been diagnosed with palindromic rheumatism,
• NHS: National Health Service (in the UK) and whose experiences, opinions, recollections
• GP: general practitioner (primary care and attitudes may vary. It is entirely anecdotal, and
doctor) often presented in people’s own words.
• UTI: urinary tract infection
• RSI: repetitive strain injury Thank you
• A&E: accident and emergency unit
(hospital) Arthritis Research UK would like to thank:
• ESR: erythrocyte sedimentation rate (test
to measure infammation in the body) • all the people who took the time and trouble
• ECG: electrocardiogram (test that to respond to our survey and to share so much
measures electrical activity of the heart) about their palindromic rheumatism stories in
• CCP: anti-cyclic citrullinated peptide (test order to increase knowledge and help others
for antibodies that indicate the presence • the anonymous charitable trust that funded
of RA) the programme of work on palindromic
• NSAIDs: non-steroidal anti-infammatory rheumatism, of which this report is a part
drugs • Jude Irwin of Word Doctor (www.
• DMARDs: disease-modifying drugs worddoctoronline.com) for her excellent work
• MS: multiple sclerosis conducting interviews, analysing responses and
• ME: myalgic encephalomyelitis (chronic preparing the report.
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 infammation)
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From one room to another: living with palindromic rheumatism
From one room to another:
living with palindromic rheumatism
Purpose of this report has been seen to precede other diseases, such as
lupus, Wegener’s granulomatosis and rheumatoid
Arthritis Research UK commissioned this report arthritis. Yet anecdotal evidence suggests it is often
in March 2013 as part of a two to three-year undiagnosed or misdiagnosed.
programme that will carry out research into
palindromic rheumatism. The aims of this part of Even with a diagnosis there is very little information
the work, leading to the report, were to: about palindromic rheumatism. Treatment options
and advice are rare too, due to the lack of research
• identify people who have been diagnosed with available. By every measure, support for people
palindromic rheumatism with palindromic rheumatism is very limited.
• learn about their experiences of the condition
• fnd out about their medical journey up to and This report is about their experiences, and to
since diagnosis. emphasise that, we have used a striking comment
from one of our research participants for our title.
The fndings in the report will help Arthritis The onset of palindromic rheumatism is, she says,
Research UK develop and distribute information like walking from one room into another.
that will help:
• people who have, or suspect they have,
palindromic rheumatism
• healthcare professionals.
It will also be shared with researchers carrying
out the next strand of the project. This will be a
qualitative (experience-based) and quantitative ‘The onset was so
(fgures-based) study into palindromic rheumatism
symptoms, diagnosis and treatments. sudden – it was
like walking from
Background
one room into
Palindromic rheumatism is a rare form of
infammatory arthritis characterised by multiple another...’
fares of joint infammation. 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
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From one room to another: living with palindromic rheumatism
Methodology Type of respondents
We used three methods to capture information Most respondents (84.5%) were women, with only
from people with palindromic rheumatism: 31 men getting in touch. This does not necessarily
mean the disease is less prevalent in men. It may
• a survey they could fll in on the Arthritis simply mean fewer men found the survey or
Research UK website, or by post wanted to fll it in.
• in-depth telephone interviews with a sample of
questionnaire respondents Most respondents wanted to talk about their
• in-depth written questionnaires flled in by condition and were grateful to be asked. Most were
some respondents. UK-based. Some were from overseas, and a few
had experienced medical systems here and abroad.
The survey questions are all included in the Ages ranged from 20s to 70s. Some people were
appendices (page 47). very sporty and active, others less so. Occupations
ranged widely from manual to desk-based and a
Responses reasonable number of respondents were healthcare
professionals themselves, from nurses and GPs to
Expectations about response rates were low, due to NHS managers.
the unresearched nature of the disease and the fact
that it is difcult 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
‘It’s very rare for
Arthritis Research UK website
• a social media campaign someone to take
• press releases to various publications
• bulletins to GPs and rheumatologists an interest...’
• 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 were still coming in. Of the
196, we interviewed 24 in depth and a further eight
completed more detailed written questionnaires.
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From one room to another: living with palindromic rheumatism
Summary of online and postal survey data
Responses to the online and postal survey Time waited for diagnosis
Many more respondents are continuing to For most people, diagnosis does not come quickly.
complete the survey, but this report focuses on the Nearly a quarter (22%) do get a diagnosis within a
responses of the frst 196 people who responded, year, but nearly half (44%) have to wait between
including: one and fve years, while 29% wait longer than that.
Some report going undiagnosed or misdiagnosed
• 31 men for well over 20 years, in some cases as long as 40.
• 165 women
• 133 people based in the UK. Joints afected
Responses Hands (including fngers) and wrists are the primary
locations for attacks (91% and 89% respectively),
Detailed responses are included in the appendices closely followed by shoulders and knees (each 77%),
(page 48). A summary of highlights is given below. feet, including toes (76%), elbows (62%) and ankles
Sometimes percentages do not add up to 100%, (61%). Hips, neck and back score 55%, 42% and 32%.
because some questions were unanswered or
because people supplied multiple answers. One respondent in the interviews mentioned that
she has fares in her jaws. Following this, we asked
Age of onset all other interviewees if they have jaw fares. Of
the 24 questioned, 50% said they have experienced
The optimum age for onset of palindromic fares in their jaws. This is a much smaller sample
rheumatism seems to be in early adult to mid life, than the 196 respondents to the online and postal
with frst fares occurring most often for people survey, but since the survey did not provide this
in their 40s (26%). However, some of our online category it may be worth noting.
respondents say they had symptoms as children
(0.5%). Some of our interviewees also report having Drug treatments tried
childhood symptoms, which went unrecognised at
the time. A very few others did not get symptoms Most people have tried non-steroidal anti-
until they were in their 60s (7%) and 70s (1.5%) infammatory drugs, such as ibuprofen (57%),
diclofenac (32%) and naproxen (41%) and others
Source of diagnosis (8.5%) with varying degrees of success and diferent
experiences of side-efects. Nearly half have tried
The vast majority of people (93%) get their analgesics such as paracetamol (47%), paracetamol/
diagnosis from a specialist, rather than their GP. codeine (44.5%) and others (7%). In terms of
Many report GPs attempting to make a diagnosis, disease-modifying drugs, over half have used
but only 4% successfully diagnosed palindromic hydroxychloroquine (56.5%), while only 21% have
rheumatism. GP interviewees who have the used methotrexate and 20% sulfasalazine. COX2-
condition themselves report being bafed by NSAIDs are used by 7%, and biologics by 2.5%.
their own symptoms and then facing a lack of
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information about it.
From one room to another: living with palindromic rheumatism
Summary of online and postal survey data
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 reported a lack of support groups
available to them and being given no helpful
guidance on diet or exercise. Some are trying or
have tried 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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From one room to another: living with palindromic rheumatism
The interviews
A number of strong inter-linking themes and sub-themes emerged during the interviews and from analysis of
the online and postal survey results.
Themes
What palindromic rheumatism is like How palindromic rheumatism afects lives
• the sudden onset of symptoms for many • the life-changing nature of the condition
people, whether for the frst time or each • coping with the emotional impact of
time a fare happens unexpected change, worries about the future
• the severity of fares and where they strike and the possible links to other conditions
• the triggers and warning signs • the implications for work and benefts
• living with extreme fatigue • lack of information or advice generally and
inadequate knowledge and understanding
among healthcare professionals and others
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 What needs to be done
• raise awareness among the public
• increase knowledge among health
Experiences of the healthcare system professionals to minimise likely
current levels of under-diagnosis
• the difculty in being believed, often causing • provide better information about
people to doubt themselves managing the disease day to day
• tests and communication of test results • provide research-based data about
• the difculty of getting a diagnosis, the outcomes for people with PR
number of misdiagnoses and the length of • develop treatments designed
time people wait for their diagnoses specifcally for PR
• varying experiences of primary care and care in
rheumatology departments
In the following pages we have used case
studies and direct quotes from the interviews to
illustrate these themes. In the appendices (page
48) you can see the interviews in full.
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From one room to another: living with palindromic rheumatism
The interviews
What palindromic rheumatism is like
Sudden onset • So far I haven’t had any sudden onsets outside
the house, but I do worry about that – what if
Frequently, respondents report being completely it happens when I’m out and I can’t drive home?
taken by surprise by their frst palindromic
rheumatism symptoms. Some woke up in the • The thing that really shocked me was the speed
middle of their frst attack; for others the fare with which it came on and completely took
came on unexpectedly while they were at work or over and there’s just no going back – it’s just
home doing their normal activities. Nearly everyone ridiculous really, and I have no explanations as
remembers their frst fare as a dramatic event, to why.
characterised by extreme and often debilitating
pain. For many this sudden, unpredictable onset • You never know when it’s going to happen –
applies to every fare they go on to have. I’ve been able to get on a bus and then not
get of and have had to stand and wait for
someone to come and get me.
• One Thursday evening, the most excruciating
pain suddenly appeared just up from my wrist
• Within a few days every joint was in pain and I
and then spread into the wrist. It was like no
was hospitalised.
pain I’d ever known. By morning it had swelled
up and I couldn’t move it at all. By the Tuesday
it had subsided. But the next Thursday I had
exactly the same pain in the other wrist. I went
to see the doctor with my hand still swollen
and he said it was very strange.
• The onset was so sudden – it was like walking
from one room into another. From that night ‘...it completely
onwards it’s just been mad. I can feel it start
to rumble and I know that within minutes I’ll took over and
be in agony – I can’t plan anything because
I don’t know what I will be able to do from there’s just no
moment to moment. Right this minute I could
going back...’
do something 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.
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From one room to another: living with palindromic rheumatism