Newbrough rheumatoid arthritis sufferer concerned by new drugs ruling

Mr Liddell, a trustee of the National Rheumatoid Arthritis Society - NRAS - said: "I can do things I literally haven't done for 30 years."

But now, under new draft guidelines issued by the National Institute for Clinical Excellence - NICE - which assesses the cost-effectiveness of treatments in England and Wales, options for patients with rheumatoid arthritis will be limited.

NICE have recommended that one drug, tocilizumab, is not used by the NHS in England, despite the fact that, when used in combination with the standard anti-inflammatory drug methotrexate, it improves remission rates six-fold. NICE has also placed restrictions on using another three drugs, etanercept, infliximab and adalimumab, which transformed Mark's life.

Rheumatoid arthritis sufferers often need a combination of drugs to treat their condition and this ruling means many may still suffer.

Mr Liddell said: "What has worked for me, and works for many others, is a combination of drugs. It is a complex disease and to find something which works you need a lot of options and our options are limited.

"It took me years to find a combination which worked. And now I have the worry if the drug I'm on stops working there's nothing else to try."

Mr Liddell, 54, of Newbrough, near Hexham, is married to Lucy, 53. They have three children, Katie, 26, James, 23, and Sophie, 19.

Mark got rheumatoid arthritis when he was 26. He said: "I woke up one morning and I couldn't move. I was in immense pain."

He was initially given an incorrect diagnosis of rheumatic fever. After 18 months of increasing suffering, he was diagnosed with arthritis.

At the time, Mr Liddell worked for Lycetts Insurance Brokers, and although he initially had to close his office because he was in such intense pain, he eventually rose to become a managing director of the firm. Over the years, he needed a number of joint replacements, but swapping medications made an impact on managing his condition.

He said: "When I was 50 the pain got into my neck so badly I couldn't control it and I took early retirement due to ill health.

"I started on my first anti TNF drug, etanercept, five years ago just after my neck problems. It made quite a difference, but over time that difference diminished. I then switched to adalimumab and that made a huge difference. My quality of life is so much better."

An official statement from NICE said that was "minded not to recommend the use of the drug [tocilizumab]" but asked for final guidance on treatment options.

Andrew Dillon, chief executive of NICE, said: "With no cure, finding ways to relieve pain, improve mobility and reduce long-term damage are the goals in treating rheumatoid arthritis.

"We want to know how tocilizumab can help, but we need to be sure that it offers real additional benefits for patients - and we need to be confident that those benefits justify the cost."

Speaking on the other drugs Dr Carole Longson, director of health technology evaluation centre at NICE said: "The committee has recommended that the use of a second TNF inhibitor following the failure of treatment with a first TNF inhibitor should only happen as part of a research study.

"Abatacept appears to work no better than rituximab in this context, and it is more expensive, so the committee does not consider it good value for money."

Alisa Bosworth, chief executive of the NRAS, said: "The combined effect of these two NICE decisions this week will be to drastically limit the treatment options for people with severe rheumatoid arthritis.

"NICE seem not to understand RA is not a one size fits all disease. RA patients can react very differently to different treatments."

Mr Liddell's worry now is the future. He said: "Unfortunately, as with most people in my situation, the question is 'what next?' if the drug diminishes.

"And now my options are very limited and the future is at present doubtful."

The National Rheumatoid Arthritis Society are holding an open meeting tomorrow from 5.30 till 8pm at Room 138, Education Centre, Freeman Hospital, Newcastle. There will be a talk by Sarah Smith on the side effects of medicines. Call Ann Marie Smith on 0191 223 1518 or email ann-marie.smith@ncl.ac.uk

RHEUMATOID ARTHRITIS FACTS AND FIGURES

IT is estimated that about one in every 250 people in the North East has rheumatoid arthritis. The condition is a chronic inflammatory disorder that may affect many tissues and organs, but mainly attacks the joints.

RA is suffered by women three times more often than men. Onset is most frequent between the ages of 40 and 50, but people of any age can be affected.

It can be a disabling and painful condition, which can lead to substantial loss of functioning and mobility. Affected joints become swollen, warm, painful and stiff, particularly early in the morning on waking, or following prolonged inactivity.

Children with the condition - termed juvenile idiopathic arthritis - amount to about one in 1,000. Peak age of onset is three to five years, but can affect any child from one to 15 years.

For more information visit the National Rheumatoid Arthritis Society's website at www.rheumatoid.org.uk