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MS experts call for end to 'wait and see' approach to treatment

Zoe Koplowitz, who has multiple sclerosis, crosses the finish line of the London marathon. For decades, it has been assumed that drug treatment is best postponed until patients really need it. Photograph: Peter Jordan/PA

People who are diagnosed with multiple sclerosis should get treatment as soon as possible, experts are saying, as they call for an end to the UK’s current “wait and see” approach.

For decades, it has been assumed that drug treatment is best postponed until patients really need it, but the results of a 21-year study published in 2012 shocked experts into a rethink. It revealed that in the trials of the original MS drug, beta interferon, those who were put on medication at the beginning were half as likely to have died as those who were originally on placebo and then given the drug three years later, when the trial ended.

“That was so powerful that it lead a lot of us to start reviewing the evidence,” said Nick Rijke, director of policy and research at the MS Society.

They concluded that even when people have mild symptoms and their MS appears to remit as well as relapse, which is the early pattern of the disease, there can be underlying progressive damage to the nervous system, caused by attacks from the patient’s immune system, which drugs may be able to prevent or postpone.

“The treatment pattern that had evolved in the UK was ‘wait and see’ – see how bad your MS is and then we will consider treatment,” Rijke said. “It was partly based on a misunderstanding of what MS is doing to people. The old understanding was around big, significant relapses. It was assumed that between those relapses, MS was effectively going away. But MRI scans showed an undercurrent of disease activity which is causing damage all the time.”

Once the damage to the nervous system had reached a certain level, he said, “you can’t really undo it. The body has a limited ability to recover.”

A consensus statement from professionals and patient groups published on Wednesday calls for neurologists to start drug treatment as soon as possible after diagnosis. Sometimes that can take time, because the treatment options are complex and it is up to the patient to choose what they prefer.

Modern drugs can be aggressive and very effective, but there are risks of serious side-effects to take into account. But the experts say a treatment plan should be in place within six months. Patients should also have an MRI scan at least once a year.

The consensus follows a meeting convened between the patient groups and the Association of British Neurologists. “They had their own process and came to the same conclusion as us,” Rijke said. “We reached agreement fairly easily that early treatment was important.”

MS affects about 100,000 people in the UK, but only 40% are receiving treatment, according to a survey by the MS Society. The UK is ranked 25 of 27 European countries on the proportion prescribed these treatments, with only Poland and Romania doing worse.

“In the UK, the most common treatment option for MS in its early stages is currently no treatment and this needs to change for the sake of tens of thousands of people’s health,” Michelle Mitchell, the MS Society’s chief executive, said.

“Relapsing remitting MS has been redefined – we now know the clock never stops with this disease and neither should our fight against it. We hope neurologists and healthcare professionals will heed the advice of the MS community and end this ‘wait and see’ culture.”

Suzanne Crighton, 52, was diagnosed in 1991 when there were no disease-modifying drugs, as they are known because they slow progression but do not cure. She was in the armed forces, working as an instructor in logistics at the RAF College Cranwell, when she realised something was wrong with her sight and her hearing. She could not drive and struggled to hear her students.

“I had nothing until about 2005,” she said. “There were all sorts of delays. I was never offered them – I had to ask. It was not until I deteriorated and was aware that drugs were available that I asked to be put on them.”

Crighton says there has been a lack of awareness of the options from patients and doctors. “Just because you are presenting with what seem to be minor symptoms or relapses that resolve fully or partially doesn’t mean you should not take disease-modifying therapies.”

She remembers thinking she was probably better off not taking the drugs because they do have side-effects, “but not realising it wasn’t just during the times of the relapses that damage was being done”.

Now Crighton fears her health may have been damaged. The drugs she was taking stopped working after a few years and her primary care trust was reluctant to pay for a new drug, though it had been approved by the National Institute for Health and Care Excellence (Nice). During a year without treatment, she had five relapses.

“I think that if I’d had that treatment earlier there would have been less progression and a better quality of life,” Crighton said. “Having five relapses in one year really disturbed my life and my husband’s life. I was sick for a large part of that year.”

Now, however, she is out of a wheelchair and back in action, running a charity for people in the military and their families who have MS, called Mutual Support. “The latest drug I have been on now for more than three years has completely changed my life,” she said.

Story Source: The above story is based on materials provided by THEGUARDIAN
Note: Materials may be edited for content and length

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