After being dealt a rare autoimmune disease, Marlin Pruismann can no longer shuffle a deck of cards. However, autoimmune neurology researchers at Mayo Clinic have just stacked the deck in his favor.
Pruismann, of Blairsburg, Iowa, has neuromyelitis optica spectrum disorder. The disorder causes the immune system to attack optic nerves and the spinal column. The attacks can cause paralysis, blindness or death.
Pruismann’s attacks began in 2014 and have robbed him of some of his fine motor skills. In 2016, he began participating in a study of a drug to treat the disorder. Mayo Clinic led the study that involved 143 patients across 18 countries.
“I thought I might as well be a guinea pig,” he said. “I guess I went into the study, obviously, because I thought it could help myself, but also if it helped others.”
He hasn’t had attacks since. That drug, eculizumab, was approved by the FDA in June for treatment of NMOSD. The treatment and test for NMOSD is good news for those suffering from the rare autoimmune disorder. However, the discoveries at the Mayo Clinic that led to both could have broader impacts, specialists say. Symptoms of NMOSD can sometimes appear to resemble multiple sclerosis.
“This is a situation in which you’ve taken a bite out of the M.S. apple,” said Dr. Sean Pittock, director of Mayo’s Center for Multiple Sclerosis and Autoimmune Neurology.
From farm to hospital
Pruismann had his first NMOSD attack in May 2014. He fell a couple times while working to build a fence at a family member’s alpaca farm, but thought little of it. The next morning, he was worse.
“My left leg was basically useless,” he said.
For weeks, he pushed through the paralysis walking with a cane and assistance from friends or family.
In June, he went to a hospital in Ames, Iowa where neurologists there determined something was attacking nerves in his spinal column. Later, at University of Iowa Hospital and Clinic, he was diagnosed with NMOSD.
One main treatment for an attack is a plasma exchange. That treatment basically resets the immune response carried by the body’s blood that is causing the attack. A regular dose of steroids is another treatment.
If treated quickly, damage from an NMOSD attack can be stemmed and even somewhat repaired. With nearly a month between the onset of his first attack and diagnosis, Pruismann permanently lost some mobility in his left leg.
Another attack in March 2015 affected his vision. He was a passenger in a car near Minot, N.D., traveling for work when grey shadows invaded his vision.
“I was seeing too many exits and too many cars,” he said.
He again went to the University of Iowa Hospital and Clinic where doctors found swelling of his optic nerve. He was referred to Mayo Clinic for treatment.
When he arrived in Rochester, his vision was 20/700 in his right eye. His left eye was worse.
Dr. Pittock told him he wasn’t happy with the results of steroid treatment and invited him to participate in the drug trial. Since the trial began Pruismann and a companion — usually his wife — would travel to Mayo Clinic for an intravenous infusion of eculizumab.
“(My wife and I) put a lot of trust in whatever Dr. Pittock said,” Pruismann said.
Pittock and trial researchers wanted Pruismann’s involvement. Most NMOSD patients are women and most present symptoms earlier in life. Pruismann was 57 when he had his first attack.
Pruismann has not only not had attacks since, but he has regained some mobility and vision. He’s not back to normal, but his new normal is closer to that than what an initial diagnosis would generally predict.
“Do I like my new normal?” he asked. “It’s not my cup of tea but I can do most things other people do.”
Pruismann has remained active since his diagnosis. He spends time working at his home woodworking shop. A financial planner, he still meets with clients. He’s also member of the Blairsburg City Council.
Even before the drug trial, Pruismann said he was determined to stay as active as he could despite the diagnosis.
“I would have adapted — I’ve got to believe that,” he said. “It would be tough and probably would take a few weeks, but I believe I would adapt.”
However, he said said he was some time before he understood the enormity of the diagnosis. It was after reading a note about his condition that he had a doctor write to excuse him from jury duty, did the severity of the NMOSD sink in.
“I read that letter and thought, they’re going to wonder why I’m not already dead,’” he said. “They’re never going to ask me for anything now.”
The FDA approval will mean Pruismann will be able to receive eculizumab at a nearby Iowa hospital by the end of September. The news means less travel time for him but that news is still somewhat bittersweet, he said.
“As crazy as it sounds, I’ll miss the people here,” he said while receiving his August treatment. “I’ve seen two nurses retire and a couple come on board since I started coming here.”