Thomas Blankenship, a 55-year-old retired IT specialist from Gilbert, Ariz., once was so weak that a wrinkle in a kitchen rug could potentially trip him if he wasn’t careful.
For more than a decade, he suffered from an autoimmune disease known as Polymyositis, an inflammatory myopathy that severely weakened major muscles in his arms and legs.
Thomas had been an accomplished amateur wildlife photographer, and his collection of bird photos is nothing short of stunning. But he abandoned his hobby after he was no longer steady on uneven ground, even falling once several years ago while on a trail in Phoenix’s South Mountain Park.
For years, he was told he simply needed to spend more time at the gym. But when a doctor noticed the difficulty Thomas had while simply trying to step up onto an exam table, he was referred to a neurologist who in turn referred him to Todd Levine, M.D., medical director of the Neuroscience Division at HonorHealth Research Institute.
The exact cause of Polymyositis is unknown. The disease shares many characteristics with autoimmune disorders, which occur when the immune system mistakenly attacks healthy body tissues.
Both hands needed to open car
Thomas was once so weak that he needed both hands to open the door to his car or work the nozzle at the gas pump.
His condition stopped progressing after Dr. Levine initially put Thomas on the standard-of-care therapy: a combination of immuno-suppressants and steroids. Physical therapy helped him regain some strength. But he was bothered by the constant hunger, weight gain and aggressive behavior that resulted from steroids.
In January, Dr. Levine cleared Thomas to enroll in a new clinical trial for a drug developed by Merck called M5049, otherwise known as Enpatoran. Ever since, Thomas has become progressively stronger each time he returns to Dr. Levine for monthly checkups.
“I’m seeing a measurable muscle-strength increase. I’m definitely feeling much better; much stronger,” said Thomas, who especially notices greater stability when he goes for a stroll: “I’m nowhere near as vulnerable and weak while walking.”
Now lifts 20-pound blocks
He recently lifted several 20-pound cinder blocks while building a backyard bar-b-que: “I couldn’t have done this just six months ago.”
And it’s now easier to carry heavier loads of groceries, though he’s still not able to lift a case of bottled water: “The worst part is getting up from a seated position, walking uphill and downhill and stairs are still a challenge.”
Still, he is pleased with his progress and describes as “excellent” the care he’s received from Dr. Levine, especially his introduction to the benefits of clinical trials, and from the staff at the Research Institute, especially clinical research coordinator Rebecca Otutoa.
“I’m very hopeful with the current medication. I have a much better outlook now and I’m looking forward to enjoying my retirement,” said Thomas, who also is anticipating another trip to Vietnam, birthplace of his wife, Ann, whom he met more than 20 years ago while living in the Bay Area. “I’m looking forward to being able to climb the stairs to the temples.”
