Early rounds of drugs bring layers of protection later on, group says
By Lauran Neergaard
Last Updated: June 25, 2000
Washington - You've been diagnosed with the often crippling nerve disease multiple sclerosis. There are three drugs to treat it. So wouldn't you try one right away?
Few patients do, even though evidence is building that early medication is better, the National Multiple Sclerosis Society says.
And people who do take the shots often quit before the medications start working because they don't understand that the protective effects won't be noticeable right away.
It's frustrating to many specialists who say the drugs reduce the number and severity of MS attacks by about a third and are even better at protecting patients' brains from MS' more stealthy damage.
The Multiple Sclerosis Society is working to better educate patients that the drugs - Betaseron, Avonex and Copaxone - are insurance against future illness.
Of the 350,000 Americans who have multiple sclerosis, only 70,000 take the drugs, experts say.
"People who take these drugs have got to believe that down the road they will be less disabled, be less sick," says longtime MS nurse Nancy Holland, the society's vice president.
But having faith can be hard if you take weekly or even daily shots that cost about $10,000 a year, suffer some annoying side effects, and still have an MS attack that puts you in a wheelchair for weeks. The society is trying to get the message out that medications may have prevented you from having three attacks instead of just one.
Multiple sclerosis occurs when the body's own immune system goes awry and attacks the nerves and brain, slowly stripping away the protective sheath coating nerve fibers.
Over time, that damage builds up to cause muscle weakness or paralysis, fatigue, dim or blurred vision, memory loss and other cognitive problems.
Most patients have MS attacks, recover and then suffer attacks again - the "relapsing-remitting" MS the three drugs target. The time and amount of recovery between attacks varies. Some people steadily worsen while others merely suffer mild weakness for decades. There's no way to predict.
The three drugs are not a cure. They don't reverse symptoms. But they do reduce the frequency and severity of attacks.
Only about 70,000 MS patients take the drugs, Holland said. And surveys suggest up to a third of patients discontinue treatment within nine months - mostly because they don't perceive the benefit.
Yet the best evidence that patients still need the drugs is seen on specialized MRI scans of patients' brains, says Henry McFarland, neuroimmunology chief at the National Institutes of Health. The scans show about half of MS patients suffer steady buildup of nerve damage in their brains between full-blown MS attacks - times when they feel healthy.
"We can probably see 10 times more disease activity on MRI" than standard neurology exam spots, McFarland explained. He said the drugs are very effective in stopping those brain lesions - one study found them 80% effective - but few patients outside of special clinical trials get the brain scans so they can't see the benefit.
Some research suggests the drugs protect better early in disease; one recently concluded Avonex taken after the very first attack of MS-like symptoms could significantly delay a second attack.
Consequently the MS society is working to help patients start, and stick with, medication as soon as possible.
Early treatment isn't right for every patient, cautioned McFarland. He says it's OK to monitor closely those with very mild symptoms who don't want to take the drugs, but he says treatment is vital for anyone with several significant attacks within 18 months or MRI scans showing active disease.
Just ask Mary Ellen Miller, who was repeatedly hospitalized at the Johns Hopkins University Medical Center where she works until she started Avonex two years ago.
"I remember not having any energy - that debilitating tiredness," said Miller. Now her symptoms are mild. "It's been wonderful for me," she said.
For more information, go to the National Multiple Sclerosis Society's
Web site at www.nmss.org.