Primary progressive multiple sclerosis patient joins clinical trial, notices symptoms stabilize

Despite a primary progressive multiple sclerosis diagnosis, Kristi Taylor, pictured with her husband Glenn, was still able to travel to Universal Studios in Florida. (Photo courtesy of Kristi Taylor)

Taylor, 52, has been participating in a clinical trial at UTHealth Houston since January 2021. (Photo courtesy of Kristi Taylor)

Taylor poses for a picture with her daughter, Amanda. (Photo courtesy of Kristi Taylor)

Kristi Taylor first knew something was off when her right leg felt weaker than usual, causing her to limp.

Looking for answers, the 52-year-old former teacher went to an orthopedic surgeon, who sent her to physical therapy for a couple of months. When that didn’t work, the orthopedic surgeon recommended Taylor visit a local neurologist, who diagnosed her with primary progressive multiple sclerosis (PPMS) in early September 2020.

Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord in which the immune system eats away at the protective covering of nerves. It can cause vision loss, weakness, numbness, fatigue, and impaired coordination. Nearly 1 million Americans are estimated to live with the disease, according to the National MS Society.

About 10% of people diagnosed with MS have PPMS – a form of the disease characterized by worsening neurologic function from the onset of these symptoms, without early relapses or remissions. People with PPMS tend to experience more problems with walking and may require more assistance with their everyday activities.

“I’m a worry-wart about everything, so when I found out I had PPMS, I was devastated,” Taylor said. “I started seeing a counselor because I was so depressed.”

Taylor’s initial neurologist referred her to J. William Lindsey, MD, professor and director of the Division of Multiple Sclerosis and Neuroimmunology in the Department of Neurology with McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth Houston). After examining Taylor in November 2020, Lindsey determined she was an ideal candidate for a clinical trial that had recently begun enrolling patients at UTHealth Houston.

The Phase III, multi-center trial is testing the efficacy and safety of fenebrutinib – a medication that inhibits the activity of certain malignant white blood cells – on the progression of disability in adult participants with PPMS.

The study will compare patients who receive oral fenebrutinib to those who receive intravenous Ocrevus, an FDA-approved treatment for PPMS.

“PPMS is relatively rare, and we need better agents for the treatment of those patients, so we hope fenebrutinib will do a better job than the current options,” said Lindsey, who sees patients at UTHealth Houston Neurosciences. “It’s very encouraging that we have a new class of agents we’re trying.”

So far, Lindsey has recruited eight patients for the trial, including Taylor, who began participating in January 2021.

“The trial has eased my mind so much about having PPMS because, this way, I can easily get my questions answered,” Taylor said. “I can email the nurse with any questions I have and get responses right away, and if I have any issues, I can get an appointment with Dr. Lindsey the next day.”

Since joining the trial last year, Taylor’s symptoms have stabilized. For the most part, she’s been able to live a normal life by walking around the block with her silver Labrador, substitute-teaching eighth-grade students, and going to water aerobics several times a week.

She’s also still traveling with her husband Glenn and 15-year-old daughter Amanda, with a trip to Universal Studios under her belt and Harry Potter-themed tours planned in England and Scotland.

“When I was first diagnosed, I thought my life was over,” Taylor said. “But now, I can still keep active.”

Lindsey aims to recruit an additional four patients for the study. Those interested may call 832-325-7080 for more information on enrolling.

The trial marks one of a handful Lindsey is overseeing at UTHealth Houston. Another study, now in its first phase, aims to evaluate the safety and tolerability of killer T-cells that specifically target Epstein-Barr virus (EBV) – which is believed to cause or contribute to MS – as a treatment option for patients with progressive MS.

“This study directly addresses one of our theories on what causes MS. The thought is, if you can get rid of EBV, you can improve how patients respond to MS,” Lindsey said. “If it’s successful, it will be another way to treat the disease with very low side effects.”

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