Daina Faust’s parents left the decision in her hands.
It was 2007 and Daina, who was 9 at the time, has just been diagnosed with polyarthritis. Her pediatric rheumatologist provided an option. Did she want to participate in a clinical trial, designed to test an aggressive medication option?
Dubbed TREAT (for Trial of Early Aggressive Drug Therapy in Juvenile Idiopathic Arthritis), it was considered one of the best researcher efforts to determine whether hitting the autoimmune disease with an aggressive regimen shortly after diagnosis can trigger clinical remission. The approach had shown some success with adults with arthritis, but until the completion of TREAT in 2011, the effectiveness of early, aggressive treatment in children was not known.
For Daina, it didn’t take much second-guessing. Even if the study didn’t help her, she says, “It would help the doctors out so they know more about my arthritis and they could help other kids with it.”
Under TREAT, Daina and the other participants received weekly methotrexate shots. In addition, they were all randomly assigned to one of two groups: one receiving etanercept (Enbrel) and oral prednisone, the other receiving a placebo.
The children and families were blinded to which medications they were receiving, although nothing prevented them from guessing. Daina’s mother, Danielle, guessed that Daina was receiving the placebo, because she didn’t experience much relief at first. Six months later, during an open-label extension, however, she chose to continue the trial with the assurance of receiving etanercept and prednisone. Within two weeks she was symptom free – and has been ever since, says her mother.
With her disease under control, Daina’s doctor began weaning her off one medication. She was completely off all medication by June 2011.
“She still has no symptoms, but we are still watching because the number from her blood work isn’t what we are wanting,” says Danielle. “Our hopes are still up that it won’t return.”
Today, Daina is a typical 14-year-old, says her mother. “And as the oldest of four girls, she wants to grow up too fast!”