Being a Co-Adventurer

Clinical trials involve risks, rights, responsibilities

by Margaret Wahl

Twenty-year-old Carlie Brinker of Millersburg, Ohio, knows what it’s like to have a chronic, disabling condition and to have to take medications that come with a panoply of side effects.

When she was 8 years old, she learned she had dermatomyositis, an inflammatory muscle disease involving weakness, pain, rashes and calcium deposits under the skin that can lead to serious infections.

Over the years, she’s taken anti-inflammatory corticosteroid drugs, such as prednisone and methylprednisolone (intravenous prednisone); methotrexate, an immune-system suppressant; intravenous immunoglobulins, which redirect the immune system; and several other medications. All of them have potentially serious side effects. Prednisone had caused significant weight gain, severe mood swings and high blood pressure.

In 2006, at the suggestion of her doctor, she entered a phase 2 trial of rituximab, a drug used to treat rheumatoid arthritis and lymphoma that blocks B cells, which are part of the immune system.