For more than a decade Alison McIntyre, from Meltham, has suffered from a rare condition that causes outbreaks of skin itching so severe it has prevented her from sleeping and made her waking hours a nightmare.

There are few magic bullets in medicine but now, thanks to a newly-licensed treatment only available in a few centres nationally, she’s finally free of the symptoms.

Most of us have experienced the discomfort of a nettle sting or a midge bite.

But imagine your entire body is covered in raised, burning wheals that are both unsightly and, in the words of urticaria sufferer Alison McIntyre, “unbearably itchy”.

For the past 12 years Alison, now 51, has endured breakouts of what is known as chronic spontaneous urticaria (CSU), a severe form of hives. At times the wheals characteristic of the condition have formed huge swellings that burn and itch. “They start off as little lumps and grow and grow,” said Alison, “and I have had it where the whole of my arms and legs are one great swelling. It itches and burns unbearably and drives you insane.

“I get it so bad in my hands that I feel like I need to burrow into the skin to scratch.”

While hives caused by an allergic reaction, nettle or insect sting, are common, CSU is relatively rare. Unfortunately for sufferers like Alison little is known about the causes and until now treatment has been reliant on the use of anti-histamines and steroids in an attempt to control the itching.

However, Alison recently became one of only 16 patients from the region to receive a newly-licensed drug for CSU – a life-changing once-a-month injection that has removed all of the symptoms. The treatment at St James’s Hospital, Leeds, has still to be rolled out nationally, so at the moment she considers herself to be among the fortunate few.

The drug, Xolair (omalizumab), an established treatment for severe allergic asthma, has been approved by the European Commission for use in the UK among CSU patients, but has yet to be commissioned by the NHS.

According to Dr Sinisa Savic, consultant clinical immunologist at St James’s: “We have been able to get treatments through NHS funding routes but these are being reviewed. There are changes in the NHS and we need clear guidance.

“CSU can be debilitating and this treatment has improved patients’ symptoms significantly. There is a role and a need for this type of therapy.” (See separate panel).

Alison agrees wholeheartedly, having discovered early on that anti-histamines, which can work well for mild to moderate sufferers, were only of limited help.

A severe urticaria rash - the raised wheals burn and itch
A severe urticaria rash - the raised wheals burn and itch
 

She believes that the condition was initially triggered by a miscarriage. And because her mum had been an urticaria sufferer she knew straight away what it was. “As far as I can tell nothing I eat contributes to it but stress and worry definitely make it worse,” she said. “I have got it much worse than my mum had it. Not only do the spots come out and affect my skin, they affect my joints and my stomach and I can’t control my body temperature. While I was living in Greece for a year I had the most horrendous bout of urticaria and my throat was swelling up, which was very alarming.”

At first Alison believed the outbreaks were cyclical and related to hormone surges but in recent years she has found that the urticaria can appear at almost any time – and does. She has also wondered if it is linked to the fact that she is also an asthmatic, although not all CSU sufferers have asthma.

“The condition has the physical symptoms of an allergy but it’s more like the body attacking itself. I think this is why it has been so difficult to treat,” she added.

Alison’s GP referred her to a dermatologist and for many years she took anti-histamines to gain some relief from the symptoms. But despite the fact that the drugs cause drowsiness as a side effect she was often unable to get enough sleep.

While living in London Alison became a patient at St Thomas’ Hospital, which is a centre of expertise for skin problems, and was prescribed steroids, which did control the symptoms but led to immediate and severe breakouts as soon as the treatment was stopped.

The only relief she has had from the condition until now was when pregnant with her son Kirolus, ten years ago. “And I was quite distressed when it came back a couple of months after he was born,” she explained.

Over the years she tried health food supplements, Chinese medicine, even haemorrhoid cream (which temporarily soothes the irritated skin), but found that nothing really worked. “I was so desperate,” she said.

However, despite all of the problems, Alison has not allowed the CSU to destroy her life. After separating from her Egyptian-born husband, she has raised her son alone and a few years ago decided to take a degree in history and English at the University of Leeds. She graduated in 2012 and is now working as a student achievement leader at Royds Hall Community School.

Since having her first omalizumab injection over a month ago, Alison has been free of the urticaria symptoms and says she feels like a different person. A second injection last week has ensured that the itching doesn’t return. “I feel so happy,” she says, “the misery of it has gone. It’s been a horrendous struggle and now I feel as if I have a new life.”

Alison recently had an operation to repair an epigastric hernia, a surgical procedure that at one time would have caused a massive flare-up in her CSU. “Just being admitted to hospital would have caused the most horrible bout,” she explained. “But I’ve been absolutely fine.”

Dr Savic says the treatment will be monitored. “With patients who respond we will have to decide if they need to continue long term or if they can come off it,” he said.

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