The untold suffering of coming out in hives

Too little attention is paid to the distressing skin condition chronic spontaneous urticaria

Imagine, if you will, a skin condition affecting as many as 600,000 people in the UK that causes untold distress, with 90 per cent of sufferers reporting that it limits their normal physical activities — including work, sport, and sex — and affects their sleep too. Throw into the mix the fact that nearly a quarter of them miss work at least once a month due to its effects, and the scale of this problem is thrown into sharp relief.

So what is it? You may be thinking of eczema, or even psoriasis. These conditions are known to most people. But I suspect most readers will not have heard of chronic spontaneous urticaria, more commonly known as CSU. More worryingly, health professionals are also sometimes slow to pick it up. And a high proportion of people who do get a diagnosis have to wait as long as 18 months or more to get a referral to a specialist.

What, then, is CSU? It is characterised by red, swollen, itchy and painful weals on the skin (often called ‘hives’) that recur daily, or almost daily for six weeks or more. Urticaria — of which CSU is a specific type — is a very common reason why people go to see their GP, visit skin specialists or allergists and even seek emergency care. The number of UK sufferers has been variously estimated at between 320,000 and 630,000, but I suspect this is a significant underestimate. This is due to a lack of awareness of CSU, the fact that some sufferers try to treat themselves without reporting their symptoms to their doctor, and confusion between simple allergies and CSU. It’s thought that at any given time, up to 1 per cent of the world’s population is affected by chronic urticaria, and two-thirds of them have CSU. Women are twice as likely as men to have it, and although all age groups can be affected, the peak is between the ages of 20 and 40.

Urticaria is described as ‘chronic’ when its symptoms are present for more than six weeks, and ‘spontaneous’ when they are triggered by an unknown cause. It is an intensely itchy and often painful condition and although each skin weal may last only a few hours, new ones start to appear even as the old ones fade away. The itching is constant and often gets worse at night. It is sometimes accompanied by severe swelling of the face, neck, hands and feet (this is known as angioedema). This pattern of swelling is such that some people can suffer from symptoms for years on end, driving them into a cycle of despair, social isolation and depression. In most cases, CSU lasts from one to five years, but it can carry on for decades.

Frustratingly for sufferers, the exact cause of their symptoms is usually extremely difficult to find, although almost half appear to be suffering from autoimmunity, where they react to their own blood serum. That fact that it is often almost impossible to determine the cause of the urticaria can add to diagnostic delay and the time spent waiting before a specialist is seen. This ties into these six key challenges which are faced by both CSU sufferers and clinicians alike:

  • A lack of specialist knowledge of CSU in primary care
  • Confusion between CSU and simple allergy
  • Poor national guidance on CSU
  • Little psychological support for people with CSU
  • Delay in diagnosis and referral
  • Poor access to effective treatment, and lack of clarity about the options for treatment.

Once diagnosed, things may not improve. Antihistamines are the first-line therapy and until recently they were the only licensed treatment for people living with CSU. But I have usually found that more than half of all sufferers do not get any relief from their symptoms with the licensed doses of antihistamine. Medical guidelines allow doctors to increase the dosage to up to four times this amount, but some are understandably wary of suggesting this, and even at this increased dose, 40 per cent of people with CSU still don’t experience any relief.

Second-line therapy involves unlicensed treatments such as montelukast and ciclosporin, which, although not specifically designed to treat the condition, may be successful for a percentage of patients. More encouragingly for CSU sufferers, the drug omalizumab — which works by modifying the body’s immune response — has recently been used with success in patients who don’t respond to antihistamines. It has now received a licence for the treatment of CSU, given by subcutaneous injection every four weeks. However, as with all new treatments, it will typically take time for the relevant specialised services to make it widely and directly available to the patients who need it. And the sticky fingers of politics are never far away, with many GPs working in a system in which the numbers of specialist referrals are limited and where local commissioners do not regard CSU as a priority problem.

I recently spent some time talking with a CSU sufferer in her mid-40s who started by apologising for looking tired because she had hardly slept the night before due to the severity of her skin itching. She did indeed appear exhausted, but the thing that hit home with me as we were talking was watching large, angry weals appear on her skin in front of my eyes for no reason at all. When I pointed these out she said: ‘This is normal. At least you know you’re not going to catch anything from me — most days I feel like a leper when people shy away from me.’

If you, or someone you know, suffers from what may be the symptoms of CSU, get checked out and seek specialist advice. This really is a condition whose impact is more than skin deep.