Liz

At 23 years old, Liz experienced her first symptom when she fell to the floor one morning and was unable to move for about an hour. Over the next few years, symptoms persisted, including numbness, tingling, and clumsiness, that would resolve after a few weeks or months. Twenty years later, Liz experienced an intense pain like an electrical shock in her leg and arm, which led her to make an appointment with a neurologist. The neurologist tested her for MS through a brain and cervical MRI, an EMG, and a lumbar puncture. At 43 years old Liz was diagnosed with MS.

Liz’s experience with medication clinical trials was a substantial part of her treatment history. After relapsing while on Copaxone, Liz worked with her MS specialist to decide on a different medication. She chose a newer medication called Tecfidera because of the promising efficacy. At the same time, there was an ongoing phase four study of the efficacy of switching from Copaxone to Tecfidera. During the study, Liz experienced gastrointestinal issues when taking Tecfidera but after receiving advice from her MS specialist, she found that eating peanut butter after taking the medication resolved the issue. During this year-long clinical trial, Liz went in for blood work, MRIs, full neurological exams, and appointments every few months.

A relapse after being on Tecfidera for two and a half years prompted Liz to switch medications. At the time, Ocrevus was being studied for FDA approval and Liz’s doctor asked if she would join the clinical trial since because fit the study criteria of having “been on a couple previous Disease Modifying Treatments that had not worked well enough.” Liz chose to participate in a 2-year, phase three study of Ocrevus for several reasons. Liz had her neurologist’s support and felt that she would get “just as much good care or better” because of the increased frequency of MRIs, blood work, and surveillance of MS progression associated with the trial. Throughout the study, Liz always had someone” she could call with questions or issues. Overall, the study “went well” for Liz and she is still on Ocrevus. 

Liz’s decision-making around trial participation involved a lot of discussion with her husband “looking at the study, looking at what is required and requested, and looking into what they already knew about the particular medications.” She also spent time discussing the decision with her doctor and her sister who was, at the time, participating in drug studies for stage four breast cancer. Liz’s participation in clinical trials stems from her being a data-driven person who was always for trying to advance things and trying to improve. Liz sees her decision to participate in clinical trials as a way to understand her MS and do whatever she could to help herself and others. At the end of the trial, Liz smoothly transitioned back to regular care because her doctors and the drug company worked together to get the medication approved through health insurance. Throughout the studies, Liz had access to her individual results and was able to monitor the results of the study from the government clinical trials website.