Clinical trial helps patient regain muscle strength

Patient stories

Lohman “Trey” B. III was once a San Francisco drummer from a musically inclined family who played in a band with one of his brothers. But in his late teens he started experiencing a weakness throughout his body.

“I started feeling a general weakness in my arms and legs, and it progressed to my eyelids,” shares Trey, which a common symptom of a condition known as myasthenia gravis. “I knew something was wrong.”

Diagnosis and initial treatment

He actually diagnosed himself by researching his symptoms at the nearby Stanford University library.

Myasthenia gravis is a neuromuscular disease that affects about 60,000 Americans annually. It leads to varying degrees of skeletal muscle weakness with the most commonly affected muscles being the eyes, face and those involved in swallowing. This autoimmune disease can result in double vision and difficulties in talking and walking. Onset can be sudden.

Trey received confirmation of the disease through a blood test taken by his doctor, who put him on a standard treatment for myasthenia gravis. This treatment included a muscle stimulant called pyridostigmine, which seemed to help a bit.

But over the decades, Trey’s condition continued to worsen until he eventually became so weak that he qualified for disability benefits.

Finding new hope through a clinical trial

It wasn’t until this past year, after he was seen at the HonorHealth Research Institute, that Trey started to substantially gain back his strength.

Anne Hatch, DO, a neurologist affiliated with the HonorHealth Research Institute’s Neuroscience Research Division, at first put him on an anti-inflammatory medication drug called prednisone, which provided a slight, incremental benefit. “It didn’t cure the disease – it just made the symptoms less aggressive and I wasn’t as weak,” Trey says.

Dr. Hatch then suggested he try a clinical trial testing a drug called Regeneron R3918-MG-2018.

Trey still doesn’t know if he received the test drug or a placebo, but he is happy that, after decades of living with this debilitating condition, he is finally getting his strength back.

On a scale of one to 10, Trey estimates his strength was at about a five. But now, since he began the clinical trial in early 2024, he feels he’s more at an eight or nine.

“It does work a lot better than the prescription drugs I’ve been on (and am still taking) since the 90s,” Trey explains. “With the clinical trial, I notice that I’m a little stronger than I have been. I have a little more strength in my eyelids, hands and my grip strength. My stamina has improved.”

All this has helped him as he cares for his 18-year-old daughter, a senior in high school, who is following in the musical footsteps of her father and family as a keyboardist and is considering going to a music college.

Clinical trials available for neurologic and spine conditions

The HonorHealth Research Institute provides the broadest range of neurologic and spine clinical trials in metro Phoenix. The trials offer treatment for a variety of conditions including disorders of the spine, multiple sclerosis, dementia and myositis.

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