Psoriasis sufferers who are too scared to use the steroid cream that can beat it
23:55 GMT, 18 June 2012
Rena Ramani well remembers the many days she spent sitting at work in agony.
‘My skin was red hot, inflamed and so painful it felt like my whole body was being given a Chinese burn,’ she recalls.
‘I wished I could just unzip my skin and take it all off to relieve the agony.’
'People would call me pizza face or stare and point. I felt like a freak show. Psoriasis has affected my whole life,' said Rena Ramani
Like more than 1.3 million people in the UK, Rena has psoriasis, a largely genetic skin condition which causes patches or ‘plaques’ of red scaly skin.
It appears most commonly on the elbows, knees, lower back and scalp, although it can affect anywhere on the body.
Rena has had the condition for more than 20 years — her symptoms started literally overnight when she woke up at the age of 12 with a red rash on her neck.
Within days, angry red plaques of scaly skin had appeared.
‘Luckily, my GP recognised it straight away as psoriasis and prescribed moisturisers and a mild steroid cream, which eased it initially, but it always came back,’ says Rena, 34, now a full-time mother who lives in North London with her husband, Diyen.
‘Sometimes I’d be covered in it from head to toe.’
She also had to learn to live with cruel taunts about her appearance.
‘People would call me pizza face or stare and point. I felt like a freak show.
‘Psoriasis has affected my whole life and is the first thing I think about when I wake up every morning.
'Sometimes I find my pyjamas are soaked with blood where I have scratched my skin during the night.
'My skin is as dry as paper and flakes at my touch,' said Rena
'My skin is as dry as paper and flakes at my touch.
'I’d love to wear dresses and shorts, but I’d be self-conscious about showing my skin.’
Psoriasis is believed to occur when faulty signals in the immune system cause skin cells to grow too rapidly, causing excess cells to accumulate on the surface.
It can start at any time of life and triggers for flare-ups can include smoking, alcohol, stress, hormone changes and some drugs including anti-malarial medication and some high blood pressure tablets.
Rena admits psoriasis has driven her into deep depression and she has even had suicidal thoughts.
‘I’ve heard other psoriasis sufferers say they’ve felt suicidal, too — in fact, one woman I met said she’d had breast cancer, but psoriasis was worse.’
An estimated 150 cases of suicide a year in the UK are linked with the skin condition.
And a study published last year in the European Heart Journal found psoriasis sufferers have three times the risk of stroke and heart problems, although no causal link has been established.
While there’s no cure, an effective range of treatment options do exist.
These include simple moisturisers and shampoos, coal-tar preparations (which can descale skin and have anti-inflammatory properties) and vitamin D treatments (which can slow down the growth of skin cells), as well as topical steroid creams to calm inflammation.
These will be sufficient in 70 to 80 per cent of cases.
Other options available only via a dermatologist include phototherapy (controlled access to ultraviolet light), and drugs and injections which can reduce the activity of the immune system.
But experts are increasingly concerned that patients are being scared off using steroid creams — one of the most effective treatments of milder psoriasis — over undue fears that they thin the skin.
Dr Anthony Bewley, consultant dermatologist at Whipp’s Cross Hospital in East London, says patients often complain they have been given conflicting advice about which creams to use and how to apply them.
Psoriasis is a largely genetic skin condition which causes patches or 'plaques' of red scaly skin
‘It’s true that steroid creams thin the skin, but not if prescribed under medical supervision and used correctly.
'Fear of steroids is often caused by lack of knowledge, and this “steroid phobia” is contributing to anxiety, treatment failure and an associated increase in the impact of psoriasis.
‘Patients need to ensure they get adequate information from their GP about topical steroids and their correct use to successfully treat their symptoms.’
A new poll conducted on behalf of a pharmaceutical company revealed GPs offer unclear advice, causing further confusion about how to apply treatments.
Fifty-one per cent advised patients to use the cream ‘sparingly’, 47 per cent thinly, 37 per cent as instructed on the packet and 24 per cent to apply with caution.
The same survey found 60 per cent of patients admitted they had stopped using steroid creams over fears it may thin their skin.
‘In fact, the medical evidence is that steroid creams are usually safe if given under medical supervision,’ explains Dr Bewley.
‘Skin thinning from short-term use of steroid cream is reversible once you stop using the cream.
‘Patients are told to apply them “sparingly” or “thinly”, but this may mean they’re not as effective.
'The key is using enough to cover the affected area — and it stands to reason that if they have a large area of skin affected, they will need more cream.
‘I think GPs are mindful of budgets — some of these creams are 20 for a small tube.
'But it is more cost-effective to prescribe steroid creams in sufficient quantities to clear a flare-up and prevent a patient needing the more expensive treatments, such as biologic injections, which can cost the NHS 10,000 a year per patient.’
Carla Renton, of the Psoriasis Association, says the charity regularly receives calls from patients confused about steroid creams.
‘Unfortunately, some people confuse topical steroids with the anabolic steroids that some bodybuilders use illegally — but they are totally different,’ she says.
‘Topical steroids are safe if used as directed by a dermatologist.’
Getting effective control of psoriasis symptoms often means trying a variety of treatments or combinations of treatments.
Last month, the National Institute for Health and Clinical Excellence (NICE) issued draft guidelines recommending the majority of psoriasis cases be managed in primary care by GPs and other non-specialists.
NICE is proposing patients should be referred to dermatology specialists only if GPs are uncertain about the diagnosis, the psoriasis is severe or extensive, the condition can’t be controlled with ointments, or if it affects the person’s physical, psychological or social wellbeing.
Dr Phil Alderson, medical associate director of the Centre for Clinical Practice at NICE, says: ‘Greater responsibility for the condition within primary care could improve access to treatments and support for people with this highly visible and potentially stigmatising disease.’
Dr Bewley says the proposal is reasonable — provided patients who want or need more complex care are still referred on to dermatologists.
‘We wouldn’t be happy if patients were left to languish in primary care without adequate treatment, or those with more severe psoriasis, where topical preparations haven’t worked, were denied access to a specialist.
‘We know GPs are interested in receiving more education about psoriasis, and there is clearly a need to educate them more about how serious the psycho-social consequences can be.’
A Royal College of General Practitioners’s spokesman says: ‘Dermatology is a firm part of the GP training curriculum and so patients will see more and more GPs trained in treating a variety of skin conditions.’
However, patients like Rena are not convinced primary care is the best place for psoriasis to be managed. One of her main frustrations is the conflicting advice she receives.
‘Typically, I’ll be told by my dermatologist to be sure to apply enough cream to adequately cover the plaques of psoriasis, but when I go to a community pharmacist he will advise me to apply it thinly and “not to be on it for too long”.
‘The other bug bear I have is not being able to get enough cream on prescription to adequately treat my symptoms — my GP will usually only give me one small 30g tube at a time, even when I have plaques all over my legs.
‘They say they are worried it will thin the skin — but I’ve been told by dermatologists this won’t happen if it is applied properly and used only when needed.’
Rena’s psoriasis was finally brought under control this year — but only by using a combination of steroid creams, moisturisers, weekly doses of the drug methotrexate and fortnightly injections of a biologic treatment called Humira.
‘I know this is only a temporary remission, though — the chances are it will come back and I will have to live with it for the rest of my life,’ she says.