New drug helps Craig fight back against extreme pain (From Bournemouth Echo)

New drug helps Craig fight back against extreme pain

9:00am Wednesday 9th December 2009 in

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CRAIG Gilbert was in his teens when he started waking up with a dull pain in his lower back and neck. At first, the pain would ease by lunchtime.

But over a period of six months, he found it harder and harder to move, until he had to begin his day rolling out of bed on to the floor then using his upper body to push himself up.

“I couldn’t understand why I was stiff as a board first thing in the morning and if I sat in a chair in the evening, I was like an old man,” he recalled.

He had always been athletic and was a keen football player, but was soon in constant pain. Months of going back and forth to his GP followed. “It was awful. Nothing worked. The pain was draining,” he said.

Craig had always assumed that his father’s curvature of the spine was the result of a car accident years before, but his parents told him it was due to ankylosing spondylitis, a form of arthritis that mainly affects the spine.

At 19, he was finally diagnosed, and tests at Christchurch Hospital revealed he had a genetic marker commonly associated with AS.

“My life was put on hold for 15 years. I had a disabled badge and was on countless drugs. It was difficult holding down work. When I got work, there was no help,” he said.

Craig had to give up football and was having steroids injected into his feet and ankles because they were so badly affected. He went self-employed and set up his own online music company and studio.

Relationships suffered. “I found it difficult to let people into my life, and when I did, some just found it too hard to deal with. The words ‘incurable disease’ had people running.”

Nothing seemed to control the inflammation and pain.

Doctors even tried putting him in traction. “It was completely barbaric. It was pointless trying to move my neck because it was fused. The pain was unbearable,” he said.

In 2000, Craig had to have his aortic valve replaced because it had been damaged by the inflammation. A few months later he had a brain haemorrhage, spending six weeks in hospital.

Eventually, his consultant suggested that he joined trials of a new drug called anti-TNF. It works by blocking a specific protein in the immune system that is known to increase the risk of inflammatory diseases.

Four years later – and despite having to have a second heart operation earlier this year – Craig, 43, of Queen’s Park, Bournemouth, says the drug has made a huge difference. “My life has been turned around after 15 years of hell.

“I no longer use a disabled badge and am at least able to take part in some activities I enjoy, like table tennis, when I feel well. Although my spine is still fused, I have adopted ways to do things.”

He injects the drug himself at home and has less need for steroids or morphine. “I still have flare-ups but the impact is greatly reduced,” he said.

Because he is now moving around more, he is rediscovering muscles he had not used for 20 years, causing painful spasms. He is also more susceptible to infections. Despite that, he says: “I couldn’t imagine life without these drugs. Anyone being diagnosed with severe onset AS now can have hope that these drugs are available if all else fails.”