May 4, 2005
Drug returned vitality patient desired
OUR HEALTH
By DAVID RUMBACH
Tribune Staff Writer
SOUTH BEND -- Heather Smith watches her son zip around the house. He's a ball of energy, a typical non-stop toddler who flies between points of fleeting interest like a hummingbird in a flower garden.
His mother, Heather, does her best to keep up with 21-month-old Ezra.
But she's held up by multiple sclerosis. The disease forces her to plod with a walker. It saps her energy and makes her long for naps.
She especially hates the naps.
"You always feel like you're missing something when you have to leave in the middle of the afternoon,'' she says.
Smith made sure she was among the first local MS patients to receive a breakthrough drug called Tysabri after it won Food and Drug Administration approval last November.
She had been watching the drug from its early stages, when it was called Antigren and was being injected into rodents. She even bought some stock in Biogen Idec, the drug company behind Tysabri.
"I've known this drug since it was being given to mice,'' she says.
Tysabri did not disappoint her when she finally had a bag of it hanging by her side at Memorial Hospital and being infused into her arm through an intravenous line.
She received two treatments, one each in January and February. But then Tysabri was abruptly pulled from the market after two MS patients who were receiving it developed a dangerous brain disease. One of them died.
But Smith did not become sick on Tysabri. She got much better. Wonderfully, she no longer craved naps. It even reminded her what life was like before she was diagnosed with MS six years ago.
"I got a glimpse of my old body,'' she said.
She was able to leave the house by herself and go shopping at Walgreens -- parking in a handicapped spot and making it to the door with her walker.
"You know you're in the house too much when you're excited about a trip to Walgreens,'' she quips.
Smith was so disappointed with the withdrawal of Tysabri that, with the help of her younger sister, Hillary Beck, she wrote a letter to Biogen asking for a favor.
Smith asked the company if there was some way she could continue taking Tysabri. She'd even sign a statement saying she accepted the risk.
The company wouldn't let her do that. But it did invite her to join its national patient advisory board. It also asked permission to add her name to a list of patients available for media interviews. She agreed to both.
The media list led to an interview with The Wall Street Journal and a quote in a recent article on disappointed Tysabri patients from around the country.
She and her husband, Troy, were to fly to Boston today for her first meeting with the patient advisory group.
Life-changing diagnosis
MS has been shaping her life ever since she was diagnosed in 1998 at the age of 28.
The first tough decision was whether or not to take one of the three drugs available at the time of her diagnosis in the hope of slowing down the progress of the disease.
Such treatment decisions are tough to make for newly diagnosed MS patients. Half of patients diagnosed with MS will progress to a worse form of the disease.
But doctors can't predict whose symptoms will stay mild and whose will become severe. So patients are often unsure from week to week whether the drug is needed, or if it's doing them any good.
Smith chose Avonex, a medication that patients give themselves by intramuscular injection once a week.
The medicine's side effects were such that she felt like she had the flu for one day of every week, she said.
"I don't regret the decision, but it was frustrating to deal with the uncertainty (of whether the drug was making a difference),'' she said.
Every shot was a fearful reminder of her disease and the fact that it might progress, she said.
Smith stopped taking Avonex when she and Troy decided to have a baby.
Pregnancy often gives women a break from their MS symptoms, especially in the third trimester. But it didn't for Smith.
"I got gypped,'' she says.
Switching medicines
After Ezra was born, Smith decided to try another MS drug called Rebif, which requires three shots a week instead of one.
The advantage is that the shots are less painful because they go just under the skin rather than deep into the muscle.
The disadvantage was that she now felt sick three times a week instead of once.
Rebif also failed to prevent her worst MS attack, one that left her paralyzed and unable to move. After that she received five infusions of anti-inflammatory steroids to calm down her raging immune system and bring the exacerbation under control.
The good news is that an MRI scan last summer showed that the number of MS lesions in her brain is basically unchanged since her diagnosis six years ago.
Smith said she's taking a break from all MS medications for a while but will eventually resume taking Avonex.
That older drug helped keep her MS lesions in check.
But after her positive experience with Tysabri, the transition will feel like a step backward.
"Biogen did the right thing by pulling it,'' she said. "Even if they have to shelve Tysabri, I think they're on to something.''
Heather Smith, is disappointed that Tysabri, a breakthrough drug for multiple sclerosis, has been withdrawn from the market.
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