Psoriasis Supplement

29 OCTOBER 2008
PSORIASIS
Challenging the traditional view of psoriasis
AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT PSORIASIS
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PSORIASIS
Introduction
Time to act say
two at the top
CONTENTS
Bare basics
4
Challenges for children
6
Fame and psoriasis by
the actor John Thomson
6-7
Types of psoriasis
7
Panel of experts
8-9
Co-morbidities and genetics
10
Research and discoveries
11
Connect and relax
12-13
Role of primary care
14
Treatments
15
PSORIASIS
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Lars Ettarp President of the
International Federation of Psoriasis
Associations, writes:
You may not die from psoriasis but
its co–morbidities can be fatal.
When I got psoriasis many years
ago it was known as one of the most
severe and stigmatising skin diseases. During the past ten to
15 years, the picture has
changed completely,
even if the stigma
remains as a huge
problem.
Today we know
that psoriasis is a
systemic disease
involving the immune system and
that the inability to control immunological pathways
results in disease pathology.
Psoriasis can severely affect the
sufferer’s quality of life and lead to
substantial physical and psychological impairment. In adults, severe
psoriasis is associated with the metabolic syndrome entailing a risk for
type-2 diabetes, obesity and cardiovascular disease.
The fi rst study to show an increased risk of cardiovascular diseases
and mortality was published in Sweden 2005, and has been followed by
a number of other studies. The new
fi ndings have also changed the panorama of the national psoriasis
patient’s organisations and our cooperation within the International
Federation of Psoriasis Associations
(IFPA).
It is not an easy task to inform
all our members and have them accept the new facts, both the medical
consequences and the importance of
lifestyle factors. At a national level
we have a duty to tell the general
public and the Government, public
authorities and health officials that
psoriasis is a disease that deserves
the highest attention. That includes
doctors, nurses and other health alliances, because the new fi ndings
are not widely known in the medical world, even in highly developed
countries.
Every year, all national psoriasis
associations celebrate World Psoriasis Day. This year, on October 29,
IFPA members are going to focus
on two things. Firstly, we will approach our governments and
inform them about the severity of psoriasis and
how it generates huge
direct or indirect costs
for society, especially
if sufferers are not
provided with the best
treatment and modern
medicine to keep the inflammatory processes under
control. Secondly, we will rally
national governments to have the
World Health Organisation (WHO)
include psoriasis in its Strategy for
Prevention and Control of Non-communicable Diseases.
I also hope you, dear reader, will
join us in this fight for a better life
for the 125 million people around
the world suffering from psoriasis.
And I encourage you to help psoriasis patients receive better care by
completing and sending in the petition found on the last page of this
supplement.
The Rt. Hon Bruce George MP is
Chair of the the All-Party Parliamentary Group on Skin, writes:
I‘m delighted that this supplement
is being published on World Psoriasis Day as it will help to raise the
profi le of psoriasis and create better understanding of the condition.
There are some 4,000 recognised
skin diseases and psoriasis is one of
the most common. It has a number
of different forms - mine is psoriasis vulgaris, which I fi rst developed while taking my fi nal exams
at university. Whereas skin cancer
has attracted enormous publicity as
the number of malignant melanoma
cases has increased by a fifth in the
past two decades, the profi le and
understanding of psoriasis remains
limited.
I was once interviewed for a
pharmaceutical survey and asked
what illnesses, if any, I suffered
from. I replied - though at that time
it must have been fairly obvious that I had psoriasis. A look of horror
appeared on the interviewer‘s face
and she exclaimed sympathetically:
“Oh, I‘m so sorry, didn‘t Errol Flynn
die of that?” “No,” I said, “I think
he died of cirrhosis, and that‘s very
different from psoriasis!”
The All-Party Parliamentary
Group (APPG) on Skin was established in 1993 and works closely with
patient groups (such as the Psoriasis Association and the Skin Care
Campaign) and health professionals
including consultants, GPs, nurses
and pharmacists. It aims to raise the
political profi le of, and understanding about, all skin conditions. It
was set up because legislators were
persuaded that there was a need to
raise awareness of skin issues in
Parliament and Government.
In particular, it was hoped the
group could help to focus the
work of health officials in providing better dermatological care.
The APPG‘s reports cumulatively
include hundreds of recommendations. The words “more” and
“better” recur: more dermatologists, better training, more equitable distribution of services, more
research, better patient involvement... Our recent commissioning
report argues for improved planning and provision of services for
people with skin conditions and
we‘d like to see this become the
reality.
I hope that this special supplement will go some way towards
helping to redress the balance.
IN ASSOCIATION WITH
s4HE0SORIASIS(ELP/RGANISATION
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PSORIASIS Bare basics
A short history
of psoriasis
We are wrapped in living, breathing skin and yet
since time began we’ve neglected huge swathes
of it. The skin has the largest surface area of all
the organs of the human body. The average adult
human has a skin surface area of between 1.5 and
2 square metres, most of which is between 2 and
3mm thick and holds sweat glands, blood vessels,
skin cells, and thousands of nerve endings.
Since aborigines discovered teatree oil man has been seeking to
address his skin problems. In India,
the sacred book of Atharva Veda
named healing plants such as neen
and vidana to cure skin diseases,
and evidence has been unearthed
at the site of Babylon of soap-like
cakes from 2,800BC, used to calm
the skin. In ancient mythology,
psoriasis sufferers were known as
“those who look like snakes” and
were thought to be “lepers” and
unclean, a stigma that sadly still
lingers today in some parts of the
world. Other topical remedies ranged from cat faeces and urine to semen and a soup made from snakes.
Rationalisation of sorts began in
the 5th Century BC, when the Greek
“father of medicine” Hippocrates
mentioned yellow sulfide of arsenic
in his writings as one ingredient in
a paste for skin ulcers. By the 2nd
Century AD, the Roman physician
Galen had built on this knowledge
and used the term “psoriasis vulgaris” to describe a skin affliction.
Taking a big leap through the
Dark Ages and the Renaissance, the
Enlightenment encouraged research
into the scientific process and London, Venice and Paris became important centres of dermatology. By
the late 18th century the English
dermatologists Robert Willan and
Thomas Bateman differentiated
psoriasis from other skin diseases.
Willan identified two categories:
“leprosa Graecorum” when the
skin was predominantly scaly, and
“psora leprosa” for the more eruptive condition. His book, On Cutaneous Disease, published in 1798, contained the fi rst clinical colour plates
of psoriasis.
In 1841 the Viennese dermatologist Ferdinand von Hebra endorsed
Galen‘s use of the term psoriasis,
giving the skin disease its current name. It came from the Greek
“psora” which means “to itch”. Von
Hebra improved on Willan’s system
of classification by relating clinical
disease to pathological anatomy.
Need to know: the bare basics
Psoriasis is a common skin disorder. It is not contagious and does not scar the
skin. It can occur anywhere on the body, normally on the scalp, elbows and
knees, and most people are only affected in a few small areas. But outbreaks
can range from being mild, with one or two patches, to severe outbreaks which
cover large areas of skin.
Normal skin renews itself every 2128 days. In psoriasis sufferers, this
is speeded up so that skin cells are
replaced every two to six days, causing the cells to build up quickly on
the surface of the skin, forming patches or ‘plaques’. This acceleration
is caused by certain immune cells
(T-cells) which become overactive.
Research is only starting now to understand what causes the immune system to behave this way.
Patches are usually red and flaky
with silvery scales. These patches
have defined edges which make them
conspicuous from the rest of the skin.
They can range in diameter from a
few millimetres to several centimetres. In more sensitive areas of the
body, such as the armpits and the genitals, there may not be scaling but
areas can be red and shiny.
These patches may be itchy and
painful. Those with less severe symptoms may just find the disorder irritating. However, for many there
are deeper psychological issues,
with sufferers dealing with low selfesteem and depression due to the
appearance of, and public ignorance
about psoriasis.
Symptoms of psoriasis can appear at any age, but most frequently
between the ages of 11 and 45, often
starting at puberty. It affects equal
numbers of men and women.
The condition is hereditary with
several genes having been identified
so far as linked to psoriasis. Around
30 per cent of people with psoriasis
have a family history of it. However, someone may inherit the genetic
combination but never suffer from
psoriasis.
Even when it is inherited, psoriasis
is normally triggered by an external event, such as a throat infection,
stress, certain medications or an injury to the skin.
Psoriasis is easily recognised and
easy to diagnose. But it is unpredictable, with sufferers potentially having both severe outbreaks and long
periods with few or no evident symptoms. However, it can not be cured,
and is likely to reappear, even after
many years without symptoms have
passed.
Treatments used arsenic right
up until the 1950s when tablets
still contained one-eighth grain
of arsenic trioxide. Ammoniated mercury was used as a topical treatment in conjunction with
baths and other remedies but is
rarely used today because of its
high toxicity. The same is true
for Folic Acid Antagonists, which
were still being used as late as the
1970s before being replaced by
its metabolite, methotrexate. Like
arsenic, coal tars have been used
since Hippocrates’ time and became increasingly popular as a topical treatment from the mid-19th
century onwards. The slogan “the
heartbreak of psoriasis” originated
in the advertising campaign for
Tegrin, which was a coal-tar based
ointment. In 1921, William Goe-
ckerman began the use of coal tar
in a hospital based regimen with
phototherapy, at the Mayo Clinic
in Rochester, Minnesota.
Goa powder or Chrysarobin was
a Chinese remedy mixed with water, lime juice or vinegar that was
spread on the skin. During World
War One when Goa powder was
difficult to obtain, Bayer synthesised a substitute called dithranol
in Europe or anthralin in the US.
Patients would be wrapped in a
dressing for up to 24 hours.
Standing on the shoulders of the
ancients and the medical pioneers
of the past two centuries, there has
been considerable progress in the
range of treatments available to
combat psoriasis in the 21st century. For more details see our treatment guide on page 15.
Promotional feature
What is World Psoriasis Day?
A global consortium of patient associations from all
over the world have come together and today (October
29) it celebrate the fifth annual World Psoriasis Day
(WPD), an event designed to raise awareness globally
about psoriasis and psoriatic arthritis.
Although the worldwide statistic
is given as 2 to 3 per cent of
the population, studies show
that psoriasis does not affect
all races equally. Up to 5 per
cent of those of white European
descent are affected.
A TNS survey in 2004 showed
that although 69 per cent of
adults know psoriasis is not
contagious, only 51 per cent
would be comfortable hugging or kissing someone with
psoriasis. While 18 per cent
would not be comfortable with
swimming, eating food prepared
by a psoriatic.
In a 2001 US study, 60 per cent
of sufferers reported that their
psoriasis was a large problem in
their daily life.
25 per cent of people with
psoriasis have cases which are
considered moderate to severe.
The National Psoriasis Foundation in the US defines mild
psoriasis as affecting less than
3 per cent of the body, while
coverage of more than 10 per
cent is considered severe.
The event is spearheaded by the International Federation of Psoriasis
Associations (IFPA), which is composed of psoriasis organisations
from around the world. The IFPA has
chosen the Burden of Disease as the
theme of World Psoriasis Day 2008.
A key strategy aim is to perform
a global joint political action inspired by and modelled on the successful “Capitol Hill Day-concept”
employed by the National Psoriasis
Foundation, USA.
The five main messages of
WPD are:
1. Psoriasis is a severe inflammatory disease.
2. Psoriasis has a huge impact
on people’s lives, both physical,
social and socioeconomic.
3. Psoriasis is not contagious
4. People with psoriasis must have
access to appropriate treatments.
5. 125 million people with psoriasis need to receive the attention
they deserve.
World Psoriasis Day is founded and
sponsored by Merck Serono.
Please join the World Psoriasis Day
2008 Facebook group.
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PSORIASIS
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PSORIASIS Challenges for children & Fame and psoriasis by the actor John Thomson
“I’m glad I’m not a Scotsman as my
knees are by far the worst”
Actor and comedian John Thomson talks frankly about coping with psoriasis
in the spotlight.
Best known for his role as the loveable Pete in Cold Feet and his array
of characters in the award-winning
Fast Show, John Thomson has also
been suffering with psoriasis for
the past six years.
Like many sufferers, his psoriasis developed at a very stressful
time in his life. “It first came on
when my anonymity ceased and I
was recognised wherever I went,”
says Thompson. “I couldn’t cope
with all the press intrusion into
my private life and the whole being
under the microscope thing. I was
a soft target for the tabloids at the
time because I’m quite a sensitive
person and that’s exactly when I
first noticed the flaky skin which
turned out to be psoriasis.”
While the 39-year-old actor only
suffers from a moderate form of the
disease he describes it as “quite a
bind at times.” He says: “I usually get
it on my arms and legs with the worst
affected areas being my elbows and
knees. Let’s just say I’m glad I’m not
a Scotsman as my knees are by far
the worst.”
The comedian has tried every-
thing from Chinese herbal remedies
to UVA rays to rubbing in grapeseed oil, all of which had no effect:
“Everybody’s got a remedy from burying a potato in the back garden to
the proper stuff. I tried the Chinese
tea bags for a while but they were
just awful. The tea’s so revolting. I
don’t know if it’s been proven to work
because I doubt anyone can go the
distance of drinking it. I would like
to try the PUVA [a light-sensitising
medication Psoralen combined with
exposure to ultraviolet light] again
but my work schedule is so sporadic
A challenge for all ages
Although psoriasis symptoms, such as plaques can appear at any age, it is not
uncommon for them to appear before adulthood. About one third of adult
sufferers develop the symptoms before the age of 16, most commonly in puberty.
It is less common to appear in infancy, with only 2 per cent of total sufferers
developing symptoms before the age of two, according to a paper being written
by Dr David Atherton, honorary paediatric consultant of dermatology at Great
Ormond Street Hospital in London.
BY LYNNE ROBINSON
Children and teenagers are prone
to the same spectrum of severity of
psoriasis as adults, although some
forms of psoriasis are more apparent
among younger people.
Guttate psoriasis, for example,
is a common childhood form of the
skin disease that usually affects
children between the ages of 8 and
16. It is often triggered by a streptococcal bacterial infection, normally
in the throat. This form of psoriasis
may clear, given effective treatment
(see below), or it may develop into
different forms of psoriasis, such
as plaque psoriasis, which is more
common across all ages. Although
symptoms may clear, little is known
about long-term prognosis of remission into adulthood.
The range of treatments available to children are similar to those
offered to adults - primarily moisturisers and emollients, prescribed topical applications such as
steroids and vitamin D derivatives,
UV treatments and stronger drugs
such as methotrexate ciclosporin
and biologicals. In general, as with
adults, doctors will start with topical treatments, and work through
the options.
Dr Atherton believes that GPs
need to be especially vigilant if
children are to receive the optimum
care they deserve. “Children don’t
like to talk about things, so you
could get the impression that they’re
coping quite well when they’re not.
It’s certainly the case with younger
children that they can be suffering
quite badly with psoriasis and need
help.”
At the same time he expresses
caution in prescribing treatments.
In particular, topical steroids are
used much more freely in adults,
but children’s skin is more easily
damaged. And teenagers may develop stretch marks from the use
of steroids, because of their rapid
growth.
He adds: “At the upper end of severity, there are advances in effective treatments, such as the newest
‘biological’ treatments, but not at
the milder end. Some of these are
suitable for children.”
It is the psychological impact
of their visible symptoms that can
have the greatest impact on teenagers, a fact many parents are aware
of. Although some sufferers may
find it easier to adapt, others, even
with mild symptoms, find it emotionally debilitating at an age where
there is a lot of emphasis on social
development and a positive awareness of body image. A study of a
range of skin complaints, published
in the British Journal of Dermatology in 2006, found that psoriasis
had the most adverse effect on a
child’s quality of life.
Dr Saleem Taibjee, a consultant dermatologist at Birmingham
Children’s Hospital and member of
the British Association of Dermato-
Photo: Chloe Hall
BY KATHERINE ADAMS
T John Thomson
logists, uses a quality-of-life index
to determine how psoriasis affects
the patient’s ability to interact with
peers, their confidence, their ability
to form relationships, and even their
attendance at school.
“Psoriasis significantly affects
their quality of life,” says Dr Taibjee. “Some patients are referred to
psychology services so that they
can explore cognitive behavioural
issues with their psoriasis and issues
of body image. Sometimes these are
patients whose skin is responding
effectively to systemic treatments,
but who still have significant issues with how their psoriasis affects
their life.”
Although topical treatments may
prove effective for many teenagers
in improving their symptoms, some
patients, particularly adolescent
girls, are reluctant to use these often messy and awkward preparations. This can cause a conflict between teenagers and parents who are
concerned that their children are
not taking their prescribed course
of treatment.
“Compliance with using their
treatments is a significant issue,”
says Dr Taibjee. “Many of the topical treatments we prescribe are
supposed to be used twice a day.
We often find they are only being
applied once. A teenager does not
really want to be applying greasy
ointments to his or her skin, especially before school. Some of the
preparations we use on the scalp, for
example, coal tar and coconut oil,
can be effective if used regularly,
but they’re just not very pleasant to
use.”
Other adolescent issues, such as
smoking, alcohol and sex education,
may be relevant to skin health and
to the safety of systemic drugs, says
Dr Taibjee. It is important to provide
an environment where teenagers
feel comfortable discussing these
issues in conjunction with dermatological treatment, without their parents and in a confidential setting.
According to Dr Taibjee, the most
important development in recent
years is the greater emphasis on careful transitioning from paediatric
dermatology provision to adult services. He says: “As children develop
into adolescents and develop a relationship with the people looking
after them at the paediatric hospital, it then becomes very difficult
to move to an adult service where
it is quite a different environment.”
The Psoriasis Association has
produced information specifically targeted towards children
and teenagers, with an interactive
CD-Rom for children, and PsoTeen
literature which provides helpful
tips for young people on how to
manage life’s stressful periods,
such as exams and making a career
decision. There is also a dedicated
teenage forum for online discussion at the Psoriasis Help Organisation (www.psoriasis-help.org.uk).
A Parent’s Guide is also available
from the Psoriasis Association, giving tips to parents on how to sensitively address issues associated to
psoriasis with their children.
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Types of psoriasis PSORIASIS
it’s hard to commit to a full course.
“Apparently Crème de la Mer [a
coveted “miracle” cream made from
sea kelp] is meant to be brilliant but
it costs £800 a pot or something and
I’m not a millionaire. I’m also a bit
more wary of the beauty products;
I tend to go for old-school products
like the coal-tar therapies.”
However, having said that,
Thomson has considered trying
the unique option of bathing with
doctor fi sh, which feed off the skin
of patients with psoriasis: “At one
point it was so horrendous I was
tempted to go to Turkey where
there’s these fi sh that eat the dead
skin cells. I didn’t in the end but I
did carefully consider it.”
Thomson is currently using
a synthetic form of vitamin D3,
which works by slowing down the
rapid growth of skin cells. Available on prescription, it has helped
Thomson’s psoriasis immensely:
“It’s not half as bad now I’m on this
cream and so long as you get into
a routine then it’s OK. It is a chore
to apply every night but you just
have to force yourself to get on
with it because if I don’t then I suffer remissions. There’s no cure but
I can cope with it as this level.”
The actor insists that applying
the cream when hot also helps: “If
you rub the cream as hard as you
can so that it creates some friction
and you actually feel a degree of
heat from it, when you put it on
your arm it works much
better than just applying it cold. It
also helps a lot
more if you
do it just after a bath.”
W h e n
washing hair,
Thomson uses
T-Gel shampoo. He
says: “Sometimes my
scalp is like a coral reef which is really not a good look but if you use a
tar based shampoo it just goes. It’s
terrific.”
The comedian has also noticed
a change in his psoriasis whenever
he adjusts his diet. While preparing
for his wedding in 2005, he went on
a health-kick to lose weight: “When
I was on a diet I didn’t cut carbs out
but I only ate good carbs like rice and
pasta and avoided things like bread
and cake. When I cut those out I saw
Types of psoriasis
Plaque psoriasis: The most common
form, affecting 80 per cent of sufferers, appears in raised, scaly patches, with clearly demarcated borders – with plaque size varying up
to several centimetres in diameter.
It most commonly appears on the
elbows and knees but can cover up
to 80 per cent or most of the body
surface.
Scalp psoriasis: is also common
among about 50 per cent of psori-
asis sufferers and appears particularly around the hairline and the
back of the head, causing irritation,
soreness and, because of its high
visibility compared to some body
psoriasis, social embarrassment.
The condition can range from mild,
with only slight, fi ne scaling, to
very severe, with thick, crusted
plaques covering the entire scalp.
In very severe cases there may be
some temporary, localised hair loss,
but not permanent baldness.
a marked improvement so I’m convinced that there’s a connection between the flour and my psoriasis, or
perhaps the yeast and psoriasis.”
Despite suffering from the disease for six years, John insists
that it hasn’t stopped him from doing anything: “I’ve still been able
to go out and act. You do get people
looking sometimes, which can be
embarrassing, but there are creams
and make-up that can sort it
out.
“My message
to other sufferers would
be to just
keep it under control
by
using
what ever is
necessary and
works for you.
And if it’s bad, don’t
be shy. Enough people have got it
so don’t lock yourself away; people just need to be a bit more aware
that it’s not contagious or won’t do
any harm to others.”
The former Cold Feet star is
soon to be returning to television
as down-on-his-luck children’s
entertainer and electrician, Jessie, in Coronation Street. While he
is currently only scheduled in for
three episodes, he hints that there
could be more in the pipeline.
Sticky, unpleasant odours and
messy preparations are often associated with traditional therapies.
In recent surveys of scalp psoriasis
patients, “time-consuming” and
“ineffective” are ranked as the two
leading complaints with existing
topical treatments. These range
from steroid creams and medicated
shampoos to coal tar and vitamin
D derivatives. Many of these therapies can be highly effective, but for
patients to gain benefit they must
fi nd them both cosmetically acceptable and easy to use in the long
term. Unfortunately this is rarely
the case.
Scalp psoriasis: meeting the challenge
It’s not just the way it looks - it’s the way it feels
Owing to its visibility, psoriasis of the scalp has a significant impact on a sufferer’s quality of life. Depression,
low self-esteem, frustration and problems with relationships are frequently reported. People with psoriasis
often describe their scalp involvement as the most
difficult aspect of the disease.
Shortcomings of existing treatments
To date, the use of topical treatments in scalp psoriasis
has proved challenging. Applying medications under
the hair can be difficult and, given that plaques on the
scalp are often thick and scaly, some treatments do not
penetrate adequately. Additionally, many treatments
require multiple daily applications and are slow to act.
It is perhaps not surprising then that so many patients
express a high level of dissatisfaction with current
therapies. High on many patients’ wish lists are ‘rapid
onset of action’, ‘long-term safety’, ‘easy to apply’ and
‘non-greasy’.
A look to the future
These findings support the need for new treatment
options. With the emotional and social consequences of
scalp psoriasis, the often unbearable physical symptoms, and the practical and therapeutic limitations of
currently available treatments, it is likely that any move
towards faster acting, easily applied and cosmetically
acceptable treatment options will be welcomed by those
with the disease and the professionals who treat them.
Top 10 tips for sufferers
1. Join a support group: contact the Psoriasis Association’s helpline
(0845 676 0076), or meet fellow sufferers online at www.psoriasis-help.org.uk.
2. The more you understand, the better you will be able to cope. Your GP and,
for severe cases, a consultant dermatologist should be the first port of call.
Certain tests - PASI (Psoriasis and Area Severity Index) and DLQI (Dermatology Life Quality Index) - will help to monitor the disease development and
efficiency of treatments.
3. Minimise stress. Consider stress management techniques such as cognitive
behavioural therapy, regular yoga and other holistic exercise routines.
4. Save up for a spa trip - the daily regimen of sunshine, mineral baths and
relaxation can alleviate the symptoms.
5. Keep a food diary and monitor your diet. There is no proven link between
specific foods and psoriasis flare-ups, but some sufferers say their symptoms
are aggravated by shellfish or spicy foods.
6. Stop smoking. In 2007, a US study in the American Journal of Medicine
claimed that smokers are more likely to have psoriasis than non-smokers.
7. Drink less. Some sufferers report a link between alcohol and the severity of
their symptoms, although for others it has no impact.
8. Sunbathe responsibly. UV rays are thought to help slow the turnover of skin
cells, but take care as some psoriasis-prone areas burn easily.
9. Manage your weight. A 2007 study in Massachusetts concluded that overweight women have an increased risk of developing psoriasis.
10. Keep moisturising – regular applications of a moisturiser such as E45
cream should improve the appearance of psoriasis.
Guttate psoriasis: is a localised rash
of small spots, up to one centimetre
in diameter. It is most common in
children and teenagers, usually
appearing on the body core and
limbs. The symptoms can appear
very suddenly, a common trigger
being a streptococcal throat infection. Up to 50 per cent of those
affected will not have another
outbreak, although it may become
chronic or evolve into another form
of psoriasis.
Nails (Psoriatic Nail Dystrophy):
Discoloured and pitted nails are
symptoms of nail psoriasis. At its
most severe, the nail can split away
from the nail bed.
Flexural or inverse psoriasis: This
occurs in skin folds, such as in the
armpits, under the breasts and in
genitals – its appearance is very
red, shiny and less scaly. Inverse
psoriasis is particularly subject to
irritation from rubbing and sweating because of its location in skin
folds and tender areas. It is more
common and troublesome in overweight people and people with deep
skin folds.
Pustular psoriasis: Localised pustular psoriasis takes the form of
raised, round yellow areas of skin
fi lled with pus, which appear under
the skin surface of the palms, soles
or both. The pustules present in a
studded pattern throughout reddened plaques of skin, then turn
brown, peel and become crusted.
The skin’s appearance will be a
combination of these brown spots
and yellow areas. The condition’s
course is usually cyclical, with new
crops of pustules followed by periods of low activity. Generalised pustular psoriasis, a rare form of psoriasis which appears abruptly with
widespread areas of very small pustules on a background of red, tender skin, is a medical emergency,
due to loss of fluids and heat.
Erythrodermic psoriasis: A particularly inflammatory form of psoriasis which covers most of the body,
it is characterised by widespread,
fiery redness which leads to skin
shedding and severe discomfort,
and also requires hospitalisation to
replace lost fluid and prevent hypothermia.
Psoriatic arthritis : Up to 20 per cent
of psoriasis sufferers may suffer
from psoriatic arthritis, which can
follow a pattern similar to rheumatoid arthritis, and cause discomfort
and pain, with the possibility of serious deformities.
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8
PSORIASIS Panel of experts
Experts tackle real issues beyond skin deep
From the latest psychological findings to treatments on the Continent, five leading professionals working in the field of dermatology
reveal their views on psoriasis.
Which treatments are really
effective?
Dr David Eedy, Consultant
Dermatologist and Honorary
Secretary of the British Association
of Dermatologists, writes:
How do you view psoriasis
(a personal take)?
The treatment of psoriasis has to be
viewed as potentially a long-term
issue. Psoriasis cannot be cured, but
the effectiveness of treatments has
improved immensely over the past
few decades.
The most effective treatments
are probably those for patients
with the most severe psoriasis.
These include ultraviolet light,
tablet treatments and injections
(biologics). These, however, are
reserved for the most severe types of psoriasis and in some ways
patients with milder forms of the
disease lose out as the extent of
their psoriasis does not warrant
the risks of the more potent treatments. It could be said that patients with severe psoriasis are
likely to be referred to consultant
dermatologists earlier, and have
more effective treatments.
Treatment has to match the patient’s
stage or extent of psoriasis. One
cannot prescribe potent treatments,
with potential side effects, for patients with relatively mild psoriasis
and patients must understand the
responsibilities placed on doctors
to help them assess the risk-benefit
ratio. Patients cannot just start on
the potent treatments unless their
disease severity warrants this.
Some topical treatments are
highly effective for relatively mild
psoriasis, which represents the
vast majority of patients.
Other very effective treatments
include forms of ultraviolet light
and drugs such as methotrexate
and ciclosporin – but all have side
effects. Newer treatments known
as biologics are given by injection,
they can only be used when the
other treatments have failed and
the patient has extensive psoriasis. All of these treatments can be
highly effective.
Some patients suffer with pains
in joints (arthritis) which can be
crippling. Again the oral or injectable treatments are particularly
useful here.
Getting the help of a clinical
nurse specialist can be useful –
they can be a point of contact when
psoriasis flares and give patients
much valuable practical help. Sadly
the presence of a clinical nurse specialist is too infrequent in the UK
and can usually only be accessed at
large dermatology departments.
What would really improve people‘s
perceptions of psoriasis?
We need “high profile” patients
to talk openly about psoriasis to
make others realise it is not infectious, and cannot be “caught from
someone”.
“
We must
not ignore the
psychological
impact that
psoriasis
can have on
patients
”
We need patients to have a good
experience of treatments from the
medical services so that they tell
others that something can be done
to help psoriasis. Negative feelings
are engendered when patients try to
get effective treatment – only to be
disappointed. Doctors and nurses
must aim to give high quality care
and improve the global outcome
(physical, psychological, work, interpersonal) of treatment aspects
of the patient’s lifestyle.
We need more publicity around
how psoriasis can cause embarrassment and not to allow psoriasis patients to be discriminated against.
mouth (oral) which are more targeted against those parts of the immune system involved in psoriasis
are likely to be developed.
Where/how should sufferers seek
help?
The first port of call should be
their GP. GPs manage the vast majority of mild psoriasis in the community. Creams and ointments
will probably be used for the foreseeable future for mild forms of
psoriasis.
With increasing severity or
when adequate progress is not
being achieved the patient should
be referred to a consultant dermatologist. They are the experts in
the management of psoriasis but
generally treat the more severe
forms.
What‘s in the pipeline for the
future?
Targeted drugs such as the injectable biologics are probably the way
forward. They remain new drugs,
with potential side effects, many of
which are still to be fully evaluated,
but are likely to become more effective with time. As we understand
the immune basis of psoriasis more,
it is likely that new drugs taken by
Dr Donal Fortune, pioneer of the
CBT method with psoriasis sufferers
and Dr Helen Richards, Lead Clinical
Psychologist, Mercy University
Hospital, Cork, write:
Our skin is undeniably tied up with
our identity. It is in the expression
of other people that we see ourselves most clearly reflected, and
such a process becomes a significant means by which we may feel
respected, loved, or accepted as a
person. When a person develops
psoriasis, they may have to contend with the knowledge that they
are visibly different to others, and
that even when the condition is
not visible to others, they still possess this unwanted difference; this
recurrent condition which for some
people may become a stigma.
Psoriasis does not have to be visible to other people for some patients to fear and anticipate their
censure; nor does it need to be ob-
“I wanted to look normal for my school prom”
Sophie Edwards, 16, has suffered from psoriasis since the age of 3, and has been seeing a dermatologist ever since. She has had plaque
psoriasis on her knees, elbows, scalp and face.
“I wasn’t bothered about my psoriasis before the age of 11, but then I
started becoming aware of my body.
At junior school I got called names
like ‘scabby’ and ‘spotty’ and it really upset me. My friends didn’t
mind about it, but I felt very down.
My dermatologist referred me to
a counsellor, and I was on antidepressants, but nothing helped. It
made me feel worse to talk about it.
I didn’t know anyone else who had
it except for my mum and my nan,
and theirs doesn’t bother them.”
“I’ve tried all kinds of treatments; but I didn’t get good results
until I started using methotrexate.
I didn’t like using creams because
they were greasy and ruined my
bedsheets and my clothes.”
“I talked to my dermatologist
about three months before my
school prom, because I really wanted to look normal for it. Not everyone at school knew I had psoriasis,
“
I didn’t like
using creams
because they were
greasy and ruined
my bedsheets and
my clothes
”
but they must have thought it was
strange that I was the only one wearing my blazer in summer. I wouldn’t
take it off, and just taught myself
how to cool down. My dermatologist
was very understanding, and let me
up my dose of methotrexate to 15mg
per week. He lets me have a say in
what treatments I want. It’s horrible
– it makes me vomit and I’m sick and
off school for two days, and I’m not
sure about needles. But I was really
pleased that my skin was almost
clear for my prom.”
“I was too embarrassed to tell my
boyfriend about my psoriasis for about
three months – I just wore long sleeves
all the time. He says he had noticed it
but he isn’t bothered about it. ”
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9
Panel of experts PSORIASIS
jectively severe to warrant significant disability and distress. A few
small plaques can be as socially
and psychologically disabling as
a substantial area of involvement
and generally up to one in four patients may experience clinically significant distress.
The belief that such psychological stress affects the course of the
condition tends to have common
currency in the experience of patients, with studies demonstrating
that between 37 per cent and 88 per
cent of patients report their psoriasis gets worse or started at times of
increased stress.
While a range of therapeutic
psychological approaches have
been investigated in relation to
psoriasis, cognitive behaviour
therapy (CBT) approaches in conjunction with medical management
appear to hold the most promise for
people diagnosed with psoriasis.
CBT specifically targets patterns of
unhelpful thoughts and beliefs held
by patients, and aims to change the
effects of such thoughts and beliefs
on how people feel and what people
do. A number of studies have shown
beneficial effects of CBT on psoriasis patients’ levels of distress. Published studies of CBT approaches
for people diagnosed with psoriasis
have usually entailed attending
for six to 12 weekly sessions with
a clinical psychologist, and results
have shown some early promise.
Work at both the University of
Manchester and University of Nijmegen is developing internet based
cognitive-behavioural approaches
for managing psychological symptoms associated with psoriasis.
While such studies are in their early
stages, internet approaches in conditions such as depression have
been shown to have promising results and are recommend by NICE.
Therefore results of such studies
will be awaited with interest by clinicians and patients alike.
Professor Torello Lotti (above left),
a leading dermatologist at Florence
University, and Professor Andreas
Katsambas (above right),
president at the European
Academy of Dermatology and
Venereology,reflect on the
variations of treatment practice
across Europe.
“Some drugs are very popular in
German speaking countries, such
as fumaric acid esters, which are
not available in southern Europe.
There are also differences in the
use of systemic treatments.
“Italy is served by an excellent
dermatologic community, which is
extremely active in the treatment
of psoriasis and is well harmonised with patient organisations and
administrators. The PSOCARE network, created by the Italian Pharmaceutical Agency to install centres
of excellence for the systemic treatments of psoriasis, is considered a
great success internationally.
“It is the best public network
available for the continuous treatment of psoriasis. Having a dedica-
ted dermatologist available to the
public in medical centres, in a precise clinical design, makes the difference.”
On the situation in Greece,
Professor Andreas Katsambas,
president elect at the European
Academy of Dermatology and Venereology, says: “The health authorities in each country vary in
their reimbursement policies. However, in Greece, following the efforts of dermatologists and specific
psoriasis organisations, the health
authorities fully reimburse
psoriasis treatment provided
that it has been prescribed
by national dermatological
centres.
“In Greece, as in most
European countries, psoriasis patients are examined
primarily by dermatologists
and not by GPs. Therefore, psoriasis patients can be treated more
suitably from the very beginning.”
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10
PSORIASIS Co-morbidities and genetics
The deadly side of psoriasis Family matters
The threat of a heart attack is not a typical worry for a woman in her twenties.
However, female sufferers of severe psoriasis have been found to be five times
more likely to suffer from a heart attack than other females of their age. As
well as heart attacks, psoriasis sufferers are more prone to strokes, high blood
pressure or peripheral vascular disease.
Professor of Dermatology and Medicine at the Memorial University of
Newfoundland, in Canada, Wayne
Gulliver, has been studying comorbidities in psoriasis for the past
15 years. He says: “The immunology
and inflammation that occurs in the
skin is very similar to the inflammation that occurs in the coronary
arteries during a heart attack, increasing the risk of mortality due
to cardiac disease among psoriasis
sufferers.”
However, there are ways of counteracting the threat of heart problems such as the systemic drug
methotrexate, which has been somewhat successful and, potentially,
the new biologics.
There are also a number of lifestyle choices a person can make, according to Professor Gulliver: “The
most important thing for people
who are diagnosed early is to keep
their weight down and keep their
blood pressure and cholesterol low
by doing exercise and eating healthily.
“Psoriasis sufferers are losing 10
to 25 per cent of their life span and
are a huge burden on the healthcare
system so an important message is
to keep eating healthily and, as we
know it is a genetic disease, keep
your family eating healthily.”
As well as the increased likelihood of cardiac-related problems
psoriasis sufferers may be more
prone to a number of additional illnesses including, obesity, diabetes,
anxiety and depression.
According to data collected by
America’s National Psoriasis Foundation, people with psoriasis are
twice as likely to have suicidal
thoughts as people without the complaint, or with other chronic conditions.
Of the one in 50 people who have
psoriasis, up to 20 per cent will
develop psoriatic arthritis. This is
likely to attack joints, from the neck
to toes, in a certain pattern. It’s not
always easy to tell the difference
between psoriatic arthritis and
rheumatoid arthritis but a history
of psoriasis in the sufferer or his or
her family, plus arthritic symptoms
is one way a doctor would be able to
diagnose it.
People with psoriasis are also
at an increased risk of developing
cancer. Research has shown that
lymphoma, a group of cancers affecting the lymph tissue, is almost
three times as common among people with psoriasis. Research from
the University of Pennsylvania
showed that lymphoma affected
276 people in 108,000 people over
65. Analysis showed that an extra
122 cases of lymphoma per 100,000
patients a year were found among
psoriasis patients. However, the research wasn‘t able to claim whether
the higher risk was due to the psoriasis or the treatments used on psoriasis, and previous research had
shown that certain drugs used to
treat severe psoriasis and suppress
the immune system were associated with an increase in lymphoma.
Because psoriasis is not yet fully understood, the
causes of it are unknown. However, about 30 per
cent of people who suffer from it have a family
history of the condition.
Dr David Atherton, honorary paediatric consultant of dermatology at
Great Ormond Street Hospital says:
“The cause is one of the things we
don’t understand exactly; although
it’s clear that, like eczema, it’s largely genetic. It commonly runs in
families and without that predisposition you are unlikely to develop
psoriasis.”
One in three people with psoriasis has
a close relative who
also has the condition.
The other two in three
people may have inherited a mix of genes
from both sides of
their family which, in
combination, can lead
to psoriasis. If a child
has one parent with
psoriasis, its chance of
developing it is around
15 per cent.
There are three
genes that are definitely linked to
the skin complaint - SLC9A3R1,
NAT9 and RAPTOR – however a
large proportion of people with these
genes never develop skin problems.
In fact, ten million people in the UK
are thought to carry the genetic variants but only a million of those show
symptoms of psoriasis. These genes
are also linked to other immune-re-
“
lated conditions such as rheumatoid
arthritis or type 1 diabetes.
Other research carried out recently has shown scientists that some
people have more than one copy of
a certain gene and they’ve speculated that this could cause some common diseases. Beta-defensins are a
cluster of genes which can occur in
the general population between two
and 12 times. They
are “expressed” in
the skin and can
induce inflammation in response
to infection or
env ironmenta l
triggers. This has
caused scientists to
suggest in Nature
Genetics that an
increased number
of beta-defensins
might increase the
risk of developing
psoriasis.
But it’s not only genes that lead to
psoriasis. There need to be triggers to
cause the disease, and this is another
area where more research is being
done. Sore throats with the streptococcal bacteria, stress, injury to skin
from a scratch or insect bite, changes
in hormone levels, alcohol in excess
and smoking are all thought to be
possible triggers.
In fact, ten
million people
in the UK are
thought to carry
the genetic
variants but only
a million of those
show symptoms
of psoriasis
”
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11
Research and discoveries PSORIASIS
Research and discoveries
Over the past four years research into the development of psoriasis has dramatically changed the way the illness is perceived, leading
to the finding of new and effective ways of coping with the disease.
BY KATHERINE ADAMS
Biological therapies in the form of
regular self-administered injections
or medicine through an IV drip have
transformed the lives of people who
suffer with severe forms of psoriasis by targeting a chemical signal in
the immune system.
Professor of Dermatology at the
University of Manchester, Christopher Griffiths says: “As a result of
laboratory work over the past
20 years it has been
shown that psoriasis
is a disease mediated in part by
components of
the immune
system. As a
con sequence
new biologic
therapies, some
of which were
developed for the
treatment of arthritis and Crohn’s disease,
are now available through the NHS
for the treatment of severe forms of
psoriasis.
“These treatments have really
changed the way we manage severe
psoriasis and the big advantage is
that they specifically target key
pathways in the immune system,
responsible for the development of
the disease without having a direct
effect on the kidney or liver.”
While a cure is yet to be found,
Professor Griffiths believes that this
is an ideal therapy for some patients,
describing it as “long-term continual control of the disease with minimal monitoring.”
Doctor Diamant Thaci, Director
of Clinical Research Division at the
Johann Wolfgang Goethe-University in Germany says: “For a dermatologist with a focus
on clinical research
and especially
psoriasis, we
are living in
very exciting times.
These biologics are
the biggest
developments in the
treatment of
psoriasis for the
past 20 years and can
now offer a hope to patients
who had previously given up on
fi nding a successful control of the
disease.”
Sufferer, Charles Skeer has had
severe psoriasis since 1981 and has
been on a biological, for the past two
years. He says: “It became effective
within a couple of weeks of using
it and after 12 weeks I had a 60 per
cent clearance rate which was just
incredible. I inject myself once a
week and I’ve got into a rhythm so
that I don’t even think about it now;
it’s just all part of the routine.
“I can’t emphasise how much it
has transformed my life. I’m able
to help out in the kitchen at home
now without having to second think
about how bad my skin is, and go
to the swimming baths whenever I
please.”
The new biologics are looked
upon much more favourably by
doctors than their predecessors,
systemic drugs. In Norway, new
national treatment guidelines have
even contraindicated the latter due
to their limitations in the longterm.
Dr Thaci said that the new biologics are not only much more target
specific but also have a better benefit to risk ratio than many of the
systemic drugs: “The fi rst trial has
proved that the clinical response
of biologics, in direct comparison
with traditional systemic drugs,
has a rapid onset of action and
achieves a higher responder rate
and are at least as safe as systemic
drugs available on the market.”
However, while these new biologics have proved to be successful
for a number of patients there are
downsides to the drugs. At £10,000
a year, the biologics are hugely expensive and the National Institute
for Health and Clinical Excellence
(NICE) has laid down strict criteria
for those eligible for this kind of
treatment, funded by the NHS.
Another worry for doctors is
the lingering uncertainty over the
long-term side effects that these
new drugs could have on patients.
Professor Griffiths says: “Although
we know the anti-TNF (tumour necrosis factor) drugs used for arthritis are safe, we have not used them
for psoriasis for any length of time
so we just don’t know for sure that
long-term use won’t throw out some
side effects that we’re unaware of.”
To monitor any changes in health
over time, every psoriasis patient
being treated with a biologic will
be put on a national long-term biologics register - the British Association of Dermatologists (BAD) Biologicals Interventions Registry.
Even today, psoriasis remains
something of an enigma to experts. While doctors confess that
there are still gaps in their basic
understanding of the disease,
slowly but surely the mysteries of
psoriasis are being unraveled in
the hope that one day a cure might
be found.
Merck Serono supporting
World Psoriasis Day 2008
Since 2004 we have been providing sponsorship, support and resources
to an annual day which is specially dedicated to people with psoriasis. Each
year a wide variety of activities take place around the world, these have ranged
from the distribution of leaflets and postcards to the staging of large arts and
sporting events, together they have helped to make each WPD a huge success and
generate worldwide media interest. Last year we organised activities all over the
world, from Canada to Thailand and this year we aim to do even more...
www.worldpsoriasisday.com
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12
PSORIASIS Connect and relax
Retreats that offer hope and R&R
When the going gets tough, here are five alternative places within easy reach of Europe - from Iceland to Israel - where psoriasis
sufferers can get away from it all. They don’t hold secret cures and unlike on the Continent will not be prescribed on the NHS, but
they may afford sufferers some relaxation and temporary relief from the discomfort and distress of psoriasis.
Many destinations combine the
concentration of salt and minerals in the sea or thermal springs
with a warm climate, sunshine
and strictly controlled UV treatment. Doctors are uncertain why
salt water is an effective complementary therapy to sunlight but
it is clear that the two work well
together and can offer some patients respite from psoriasis for a
number of months.
Health resorts are likely to be
staffed by understanding professionals and populated by fellow
sufferers who often find a degree
of comfort and support among
each other. Dealing with the external manifestations of psoriasis
helps people to cope better with
the often demoralising mental
side of the condition. Just by taking action into their own hands
provides a psychological boost for
some people and helps to promote
wellbeing.
Spa Smrdaky, in Western Slovakia, alleviates the symptoms of
sufferers through its intensive
treatments of daily mineral baths
combined with UV lamps.
The feel is more clinical than
kick-back resort, the grounds are
roomy and the spa lives up to its
“stinky” name with a sulphurous
rotten-egg smell.
Like many health resorts, the
spa recommends a stay of threeplus weeks, but visitors have reported a marked improvement
even after ten days. Treatments
– taken naked - include tars, salicylic acid creams, moisturiser and timed daily baths in the
hydrogen-sulphide-rich waters.
All-inclusive ten-day packages,
including two medical examinations and five treatments a day,
start from £599.
(www.kupelesmrdaky.sk)
The Daniel Dead Sea Hotel, in Ein
Bokek, Israel is no quick-fix day
spa. Many people book in for at
least two weeks to treat a particular complaint such as psoriasis
with a daily treatment following
an in-depth medical consultation
– though it’s always worth checking beforehand that they have
staff on hand who speak fluent
English. It is an authentic Dead
Sea Shizen spa with 22 treatment rooms, Dead Sea pools and
a 70-strong, predominantly Russian, platoon of therapists.
The Dead Sea is only a short
walk away from the hotel, where
It helps to be connected
There is no doubt about it that psoriasis causes social difficulties for sufferers which range from awkward to
“paralysing”. Many people with psoriasis have employed some form of avoidance strategy during their life.
BY LYNNE ROBINSON
This is echoed by a recent American survey which showed that 20
per cent of sufferers find their psoriasis socially embarrassing. Perhaps more tellingly, an Irish study
in 2005 showed that 72 per cent of
sufferers avoid swimming, 60 per
cent avoid sunbathing and for half
of the respondents it inhibited their
love life. Even in sufferers with mild
symptoms it may significantly impact their ease of social interaction.
“Although my friends are quite
sensitive about it, and are used to it,
I can get quite down when I’m with
new people,” says Caroline, 32, a te-
acher who suffers from mild psoriasis on her scalp and elbows. “I try
to explain what it is to people. Although it’s just part of who I am, I am
self-conscious about it. I try not to
wear dark clothes which will show
up ‘dandruff’ from psoriasis falling
from my scalp.”
People manage their psoriasis in
different ways depending on their
personality, the severity of the
condition and the support network
available.
Where the condition is highly
visible sufferers may feel self-consciously different. Others may feel
stigmatised from bad experiences
or rejection from ignorant observers who are unfamiliar with psoriasis, or who may wrongly think
it is contagious. Self-esteem issues
can make sufferers reluctant to put
themselves in new social situations,
presuming others’ reactions to them
will be negative, even if this is not
the case.
“I’ve never had a bad experience
with a stranger,” says Kate Mackenzie, 31, who works in publishing. “But sometimes I feel very
self-conscious as I work in a customer-facing role. I have psoriasis on
my knuckles and am very aware of
it when I show books to customers.
Strangers will ask me innocently
what I have done to myself, thinking I have been burnt. I automatically find myself explaining that
it’s not contagious.
“It always makes me feel better if they have heard of psoriasis
already, and know what it is. That
said, I have never worn a vest top
or T-shirt in my adult life, except to
the gym. And I am not as outgoing
as I might be if I didn’t have it. I
don’t put myself in social situations
where I might meet someone.”
Guy Kennaway, 51, is the author
of Sunbathing Naked and other Mi-
racle Cures, a memoir of his search
for a psoriasis cure. He has suffered
from psoriasis since the age of 24,
and first had it on his face. He says:
“I loved skiing and scuba diving,
as I could cover my face. I sought
out dark places, literally. I knew of
every pub and club in Edinburgh
with low lighting – I was especially
afraid of ultraviolet light which
showed every flake, like stardust. I
spent a lot of afternoons in dark cinemas.
“It really did affect my social life,
and it made a lot of decisions for
me. Because my psoriasis tended to
come and go quite fast, I got it into
my head the idea that it was a sort of
commentary on my life and on my
behaviour. I noticed that there were
some people that when I went to see
them it got really bad. It was particularly bad around a few of my family members and often strangers. I
began to avoid those situations.
“I would make a social engagement, and notice that my skin
would deteriorate in the days before
it, especially if it was something testing like a wedding, or somewhere
where I had to give a speech. Then
I would cancel my plans and notice
that my skin would immediately
improve. My skin was living my life
you can float and allow the oily
minerals to seep into pores. The
waters, weather and the high oxygen levels in the air put a decisive
spring in guests’ steps
(+972 8 6689999;
www.tamareshotels.co.il/e/)
Hydrotherapy Centre, Avène Les
Bains, near Montpellier, South of
France
The spring water used in all the spa
treatments at Avène is said to have
remarkable healing powers. Its soothing property may be due to its
long filtering journey through the
mountains before it emerges in the
for me, like having a very dysfunctional friend or relationship. I hated
it. Unlike a dysfunctional relationship it was impossible to leave it. I
was really trapped inside it.
“In my late thirties, when my
psoriasis was particularly bad, I
had two small children of my own.
I sought out the company of little
children and even animals. I could
relax more with them as they didn’t
seem to notice it. I was also drawn
to people with skin problems, there’s
an understanding and empathy. I
tend to like those people.”
Kennaway first met other psoriatics when a friend recommended
he take a trip to a clinic at the Dead
Sea. “It was a huge change in my life
when I first met other people with
psoriasis. I found a community of
people and that turned it on its head
for me as I love those people and
have a great time with them. That’s
when I started taking control of it.”
There are significant benefits to
being part of a support network,
many of which can be found online.
There are several psoriasis-related
Facebook groups with members from
all over the world. The discussion
forum at the Psoriasis Help Organisation (www.psoriasis-help.org.uk)
has a thriving community of more
than 8,000 members. Kennaway,
a user of the forum himself, says:
“The website is buzzing with people
who are talking safely behind their
screens, so they don’t have to reveal
their skin. Instead they can reveal
their character and personality.” For
some people that can be an important first step towards more normalised social interaction.
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13
Connect and relax PSORIASIS
Unique Healing Effects Clinic for
psoriasis sufferers.
The silica and blue algae, which
give the lagoon its opaque colour,
are thought to contain remedial
properties for psoriasis, eczema
and a host of other ailments.
One of the benefits of Blue
Lagoon‘s psoriasis treatment,
compared to treatments in warmer
climes, is that it does not require
long periods outdoors exposed to
sunlight, thereby decreasing the
likelihood of skin cancer and untimely ageing of the skin.
All treatment guests need to
have a referral from a dermatologist and the clinic’s dermato-
logists and nurses regularly examine “patients” and evaluate the
results.
The Blue Lagoon’s natural
treatment of psoriasis involves a
combination of showers, bathing
in the waters, use of in-house
products and UVA/UVB light
therapy. It is recommended that
guests who enter an intensive full
treatment programme bathe twice
a day for one hour at a time. The
treatment process normally takes
21-28 days.
A week’s twice-daily treatments, with full board but excluding flights, costs from £928pp.
(www.bluelagoon.com)
Sex and psoriasis
T Blue Lagoon, Reykjavk
springs at Avène.
A three-week stay usually
begins with a consultation with
a dermatologist, who prescribes
a daily skincare regimen. Typically, this includes bathing and
showering several times a day in
the spring water.
Treatments are tailored to deal
with patients’ individual needs,
for example, to help treat psoriasis on the scalp. The centre also
offers workshops on applying camouf lage make-up. Treatments,
without accommodation, cost
from £500 for three weeks.
(www.avenehydrotherapycenter.
com).
Balikli Kaplica Spa, Kangal, Sivas,
Turkey
The accommodation is cheap
Guy Kennaway describes Claire’s fear of a new relationship.
and functional but people come
for the two hot open-air and
two indoor pools, each home to
hundreds of voracious “doctor
fish”. It’s all part of a treatment
that claims to “heal” psoriasis at
this remote spa 5,000 feet high
in the Central Anatolia region of
Turkey.
The psoriasis treatment regimen takes dedication – 21 days of
twice-daily, four-hour bathing
sessions in the fish pools is prescribed, plus drinking 1.5 litres
of spa water a day on an empty
stomach.
The combination of the metalrich mineral waters, the fish and
mountain sunlight leave many
guests reporting a significant
improvement in their skin condition during the treatment.
According to experts, the removal of superf luous skin f lakes
by the nibbling carps and minnows aids sufferers because it
may help topical medications to
penetrate more deeply.
Medical reports are ambiguous
about the effectiveness of the spa
for psoriasis sufferers. Although
a study paper published by Dr
Martin Grassberger, of the Medical University of Vienna, showed
clear benefits to more than 70
per cent of patients and an average remission time of more than
eight months. (00 90 346 469
1151/53/54).
The Blue Lagoon, near Reykjavik, Iceland, is home to pools of
steaming, milky-blue, geothermal seawater open to all, and a
“Psoriasis has amongst its many claims the ability to really mess with your sex life.
It’s as if it enjoys doing it. When it’s shameful to strip off and reveal your nakedness, sex becomes a nightmare, if not totally impossible.
“Of course Claire, who suffered from psoriasis patches on her buttocks and
thighs, was scared that if Robert saw the so-called ‘garment burns’ he’d run a
while. She had got no joy from the doctor’s tubes of ointments, so when the moment came and she found herself in bed with Robert, she just hurriedly turned
off the light and pulled up the bed covers to hide herself. It was brave of her to
do even this.
“There are tens of thousands of people suffering from skin condition who
have had to cut sex out of their lives altogether because they are too scared of
rejection.”
“‘Every time Robert’s hand started going near my bum,’ she told me, ‘I wriggled
like mad so he wouldn’t feel the patches,’ she laughed. ‘It went on for months, and,
of course, I always had to walk backwards to the bathroom. One morning he asked
me why I never turned my back on him in the bedroom – and I said it was because
I loved him so much I couldn’t take my eyes off him. He proposed a week later,’ she
smiled at the memory. ‘I said yes of course, and then thought, blimey, when am I
going to tell him about the psoriasis? I’m marrying under false pretences.’”
Sunbathing Naked and Other Miracle Cures, by Guy Kennaway, is published by
Canongate Books priced £10.99
For advice: contact the Psoriasis Association’s helpline
(0845 676 0076), or meet fellow sufferers online at
www. psoriasis-help.org.uk.
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14
PSORIASIS Role of primary care
Wake-up call for healthcare changes
Around 80 per cent of people who suffer from psoriasis can be treated by their GP.
While this may sound simple, many
patients, especially those with more
severe psoriasis, have become disenchanted with the NHS after being
misdiagnosed, refused referral to a
specialist or experienced a lack of
specially qualified trained staff to
care for them.
An audit released in February
2008 by the British Association of
Dermatologists (BAD) highlighted a
deficiency in a number of services
offered by the NHS where patients
across the UK had experienced differing and sometimes sub-standard
levels of care.
Dr Colin Holden, President of the
British Association of Dermatologists, said: “The audit shows that on
a national level, the NHS is failing
to provide patients with the level of
care they deserve. Basic elements
such as bathing facilities, appropriately trained staff and access to
treatments are lacking to a worrying degree.”
The audit found that 20 per cent
of hospitals had no dermatology
specialist nurses, 32 per cent had
inadequate bathing facilities, in 41
per cent of hospitals topical treatments were applied by nurses who
had no dermatology training, or by
the patients themselves and, perhaps most worryingly, five per cent
of hospitals did not have the appropriately trained person monitoring
the UV output of the phototherapy
equipment, despite this being mandatory.
Bruce George MP, and Chair of the
All-Party Parliamentary Group on
Skin, concedes that “the provision
of dermatological services can vary
startlingly across the country.”
Psoriasis sufferer, Kate Mackenzie noticed the discrepancies after
receiving medical treatment from
hospitals in both Exeter and London. While a student in Exeter she
had to wait just two weeks for an
appointment with a consultant but
after visiting her doctor in London
she was on the waiting list for three
months.
“
The audit
shows that on
a national level,
the NHS is failing to provide
patients with
the level of care
they deserve
”
Similarly, she was shocked to
find varying amounts of information available to patients: “Recently I decided to see the doctor again
who suggested that I tried tablets
as nothing else was working. Previously I had only been prescribed
creams so was very surprised to dis-
cover options that had been around
for 40 years.”
At a recent meeting of patient
groups, sufferers argued that primary care needs to be more efficient when educating sufferers on
the availability of “new” biological
drugs, some of which have been
around for the past four years.
Furthermore, with the new data
concerning co-morbidities, it may
also be beneficial to educate GP’s
on the severity of the disease and
the need for early and continuous
treatment to address the underlying
inflammation as well as the skin
symptoms.
In response to the BAD audit,
Helen Cook, a spokesperson for the
Department of Health, said that it
is up to each Primary Care Trust in
consultation with local stakeholders
to determine local priorities for improving services. She added: “The
Department of Health recognises
the distress and discomfort that
skin-related complaints can cause.
There are a range of related services
available on the NHS and NHS organisations are legally obliged to
provide funding for treatments recommended by NICE technology
appraisals.”
In an attempt to improve the
treatment of those suffering with
psoriasis, the Chief Executive of the
Skin Care Campaign, Andrew Langford, spoke out in the House of Commons last year, highlighting the
need to add common skin conditions
such as acne, eczema and psoriasis
to the Quality Outcomes Framework
(QOF). This would, in turn, create an
incentive for health professionals to
take the disease more seriously and
therefore produce a better service
for patients.
Langford said: “For years, people
with skin diseases have been overlooked by the NHS. Health professionals receive very minimal training
in this area and as such patients are
receiving a very low standard of
care. There is a great need for health
service provision to take a more holistic view in the treatment of patients. Changes in secondary care
access, including the introduction
of referral management schemes
pose a significant threat to patient
interest.”
It’s a view echoed by Bruce
George: “Much of the burden currently falls on GPs, whose training
may well have contained little on
dermatology. This lack of training,
and often interest, in dermatology
can result in poor initial diagnoses,
sub-optimal prescribing and inappropriate or non-referral to specialised treatment. Added to this, the
contracting out of some dermatology services in primary care has
led to “cherry picking” of the easier
cases while more difficult cases are
often left stranded between primary
and secondary care.”
Another area where the services
for psoriasis sufferers are lacking
is the identifying and subsequent
addressing of depression and anxiety that has emerged as a result of
the disease. Professor of Dermatology at the University of Manchester, Christopher Griffiths, describes
the understanding of the psychological difficulties encountered by
patients with psoriasis and other
chronic diseases as a severely “unmet need” within the NHS.
If the Skin Care Campaign succeeds in adding psoriasis to the Quality Outcome Framework it will inevitably improve the level of standards
of services offered by the NHS. In the
mean time, the Skin Care Campaign
is working to raise awareness of the
physical and psychological impacts
of living with the disease in the hope
that one day the correct and reliable
pathway of treatment for individuals
is offered by the NHS.
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15
Treatment PSORIASIS
A treatment guide
From coal-tar to biologics, we weigh up the pros and cons of a range of
treatments for psoriasis.
Topical treatments
There are a number of topical therapies that can be used for moderate
psoriasis, with creams and ointments
being the most common. The creams
contain chemicals similar to Vitamin D and work by slowing down the
excessive growth rate of skin cells.
Topical steroids are common among
sufferers whose psoriasis covers five
per cent or less of their bodies.
Coal tar preparations used to soothe the skin are also popular and
creams containing the tar should
be applied to affected areas twice
daily, avoiding sensitive areas such
as the face and skin creases.
Similarly, dithranol preparations
can be used as a ‘short contact therapy’ where the patient applies the
ointments themselves every day for
30 minutes to an hour, gradually increasing its strength every three to
five days.
Positives: Generally effective on
localised psoriasis if used properly;
relatively easy to apply.
Negatives: Limited efficacy and
compliance are drawbacks. Creams
can take up to 12 weeks to take ef-
fect while the coal tar and dithranol
preparations can be messy, odorous
and time consuming to apply. Potentially, overuse can interfere with
the body’s absorption of calcium
and strong steroid cream can thin
the skin on the face, in fold areas
and even interfere with sight if it
penetrates the thin eyelid.
Phototherapy
Around 80 per cent of people with
psoriasis experience an improvement in their condition having spent
time in the sun. Phototherapy is the
transmitting of the sun’s rays onto a
person’s skin and usually applies to
those patients whose psoriasis is so
severe that creams and lotions have
little effect.
There are two types of phototherapy and they are administered in
phototherapy centres located around
the country.
The first treatment is UVB rays
where patients stand in a UVB cabinet
for a few seconds to several minutes,
usually two or three times a week for
a period of several weeks. Patients are
not required to take tablets.
The second kind is PUVA therapy
which is the use of UVA light, again
in a cabinet, while simultaneously
taking tablets known as Psoralens.
This is most successful on thicker
plaques of psoriasis as the rays are
absorbed much deeper into the skin.
Positives: Often has good results and
is paid for by the NHS unless the patient decides to go private.
Negatives: Exposure to the UV light
can potentially cause skin damage,
premature ageing and an increased
risk of skin cancer. The skin can become red, dry and itchy so patients
are encouraged to continue using
creams and moisturisers while undergoing treatment. The Psoralen
tablet can also make you feel sick
but this can easily be counteracted.
There is also limited accessibility to
the phototherapy centres and regular visits can be time consuming.
Oral Medications
There are a number of systemic
drugs, such as methotrexate or hydroxyurea, available to help with
moderate to severe psoriasis, all coming with potential side effects and
are best used short-term (no more
than 18 months). Clinical and blood
tests are required to ensure that patients are suitable for the drugs while
women should not attempt to become
pregnant while on them.
Biologics
Biologics are the latest treatments
for sufferers of moderate to severe
psoriasis who have not responded to
any other treatments. These biological drugs are made from living or
animal proteins and act differently
to systemics because they block the
disease in its early development in
the immune system. They are given intravenously through a drip or
Positives: Side effects are generally
minor although allergic reaction
to the injection can occur. Recent
research has shown that a clinical
response can be seen within four
weeks of initiating treatment. Efficacy and safety data varies from six
months up to three years depending
on the which drug type. Patients
are able to administer the injections
themselves, thus reducing the need
to go to the clinic for regular checkups.
Negatives:Biologics can improve
psoriasis for some people but not all
and long-term safety is still being
evaluated. They must be taken continuously to maintain improvement
and are very expensive. Costing
from £9,000 a year, NICE has laid
down strict criteria for those eligible for the biologics paid for by the
NHS.
doctor prescribed UV. Result! For
the first time in my life I had some
respite from psoriasis: I swam, I
wore T-shirts, I began to live life
but you can have too much of a
good thing: my remission time
got shorter with every treatment
and eventually, I used up all my
life-time joules [units of energy].
In 2003 I went out to the Dead
Sea for the first of many visits. I
may have used up my joules in the
UV booth, but I could go out to Israel and soak up the rays there. I
have spent a fortune going out to
the Middle East for my skin and it
has certainly helped me, but like
everything else, the remission
times were short.
I seemed to have tried and failed
everything.
In 2006, I realised I was a candidate for the new biologicals. I convinced my dermatologist and we applied for funding from my Primary
Care Trust. It was to become a lengthy process – taking over a year.
In 2007 I started self-injecting a
biological but it wasn‘t effective for
me. So, in February this year, I began another biological and in a few
months my psoriasis went from 60
per cent coverage down to less than
1 per cent.
For the first time in my life, I have
a continued remission from psoriasis. It has been a long roller-coaster
ride of a journey, but it seems I have
actually found a treatment that
works for me and I feel I can look to
the future. Thanks to a weekly injection, I can say life truly begins at
40.
Positives: Easy to use and available
on prescription.
Negatives: Methrotrexate’s side effects include nausea and potential
liver damage so no alcohol while
taking the drug. Ciclosporin: - potential kidney damage, increased
risk of infections, malignancy and
hypertension. Patients should also
continue to use creams and lotions.
“I lost my 20s
to psoriasis”
SJ Crampton describes
I was diagnosed with psoriasis by the family GP nearly
30 years ago, at the age of 10. I was the only member of
my family to suffer and I didn’t meet another person
with it until I was in my early thirties.
When I was young, any discussion
about treatment always took place
in a doctor‘s room and did not include me; they spoke over my head
to my mother. In fact, I sometimes
wondered whether I needed to be
there at all, seeing as they continually prescribed the same creams and
weren‘t the least bit interested in me
or my skin; “apply this twice a day
and I‘ll see her in 6 months...”. There
was never any mention of how I
“felt”, how I coped with the feelings
of worthlessness, despair and depression.
By the time I was 16, I gave up on
traditional medicine. My psoriasis
just seemed to have a mind of its
own, regardless of how much I complied with the creams I was prescribed. I decided to turn to “alternatives” – homeopathy, diets, Chinese
herbs. I tried everything. If you told
me rolling in cow dung would help,
I would have happily rolled.
My psoriasis seemed to laugh at
my efforts and marched on. I retreated and gave up completely. These
were particularly miserable years.
I lost my twenties to psoriasis. It
won. I became more isolated, more
depressed and hid myself and my
skin from the world.
In my late twenties I was offered
systemic drugs. I didn‘t know you
could take pills. I also didn‘t know
they could have side effects. I ended up having a liver biopsy because the organ was complaining
about the amount of pills I had
swallowed. And still I had severe
psoriasis. At its worst, it covered
70 per cent of my body.
When I moved area, another
via an injection, either at clinic or
at home, and are suitable for those
with or without plaque psoriasis and
severe psoriatic arthritis.
16
PSORIASIS
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