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"I was just sleeping all the time," she said of that time before聽her senior year of high school, "and the joint pain was at a point that I would have to roll out of bed. I was almost crawling."

A bad flare put her in the hospital for several days with inflammation around her heart and fluid around her lungs.聽

"I realized the severity of the disease, and that was pretty disheartening," said Koop Daughtrey, now 28 and living in Omaha, Nebraska.

She tried a lot of different treatments over the years. She also graduated from college, married and had twins, now 17 months old. But the disease had begun attacking her kidneys in spite of intensive treatments. Some patients in that situation end up on dialysis and require kidney transplants, said Dr. Jennifer Medlin, a rheumatologist with Nebraska Medicine.

So when Medlin mentioned a newer type of therapy, Koop Daughtrey was excited. In April, she became the first lupus patient to receive CAR-T, or chimeric antigen receptor T-cell therapy, as part of a clinical trial at the University of Nebraska Medical Center.

The trial also involves another twist: While CAR-T therapies used in cancers and tested in autoimmune diseases typically have been derived from patients' own cells, researchers believe hers was the first treatment for an autoimmune disease to come from a donor source, known as an "off-the-shelf" therapy.聽

'I feel incredibly lucky'

Nearly six months later, Koop Daughtrey said the pain she had expected to live her life with is gone. "It's wild," she said. " ... I can believe it since I'm in my body, but it's amazing."

The past summer, in fact, proved a real test of the therapy, she said. Her husband was deployed with the military for a time, leaving her to care for their twins, including lugging the solidly built toddlers up and down the stairs in their home several times a day. She's experienced some back pain, but it's not lupus pain.

"I think I'm experiencing normal pain," Koop Daughtrey said. "It's amazing. I feel incredibly lucky."

Dr. Matthew Lunning,聽medical director of the gene and cellular therapy program at Nebraska Medicine, said doctors at the medical center have used CAR-T to treat hundreds of lymphoma and leukemia patients since the late 2010s.

Patients' T cells, a type of immune cell, are removed from their bodies and genetically engineered to recognize and attack cancerous B cells. B cells are another type of immune cell that makes antibodies and fights infections.聽

The therapy has proved powerful tool against lymphomas and acute leukemias, he said. But more recently, researchers have been testing the therapy on lupus and other autoimmune diseases, in which an overactive immune system attacks patients' own bodies. The hope is that the therapy, by destroying certain B cells, will reset the immune system and calm its overactive response.

"We think that, in the right situation, perhaps the risk and benefit is there that it may work in conditions like lupus," Lunning said.

Medlin said researchers at the University of Minnesota recently treated a second patient in the multi-site trial, which is being conducted by a biopharmaceutical firm.

"Lauren was brave enough to be the first," she said.

An off-the-shelf therapy, Medlin said, could speed the treatment process and make it more accessible to patients. Creating therapies from patients' own cells is time-consuming and not as accessible to patients in areas where the expertise needed to administer them isn't readily available.

"It may be more available to patients in the future if we find it's just as effective and safe," said Medlin, the principal investigator for the study at UNMC. "That's why these studies are important."

Therapy still early in early stages, but there's hope

Lunning said access remains the biggest barrier to the use of CAR-T cells not only in the United States but also around the world. He recently traveled to Singapore where he taught health care professionals from southeast Asia how to use the therapy and manage lymphoma patients who receive it.聽

Medlin said a successful trial by German scientists that resulted in medication-free remission for five hard-to-treat lupus patients started the ball rolling for using CAR-T in patients with autoimmune diseases. Now there are several trials in such conditions involving both self-derived, or autologous, cells and off-the-shelf, or allogeneic, therapies, including the one the Nebraska team is involved in.

However, she noted that CAR-T trials for lupus and other autoimmune conditions still are in very early phases. Lupus itself is fairly rare, affecting an estimated .05% of the population. But it impacts predominantly young women and children and can cause significant impairment and quality of life issues.

But as with any CAR-T therapy, patients must be monitored carefully for potential side effects.

Koop Daughtrey, who is originally from Raleigh, North Carolina, said she felt like she had tried everything else. Treatments didn't put her into remission like they did others. She had heard about CAR-T several years ago. After Medlin mentioned the trial to her, she decided to go ahead.聽

The hardest part was eliminating or reducing doses of her medications before trying the new therapy, she said. That was a rude awakening to the severity of her disease.

"That was a time for me to be like, 'Oh, this stuff was actually really working,'" she said.

She underwent a variety of tests and received chemotherapy. Then she was admitted to the hospital and injected with 360 million CAR-T cells. She was monitored for five days, but she said she felt fine. She went home to wait to see what the cells would do.

Since receiving the therapy, she has been able to do more and limit her activities less. She said she also feels good about the possibility that an off-the-shelf treatment could make the therapy more accessible to others in the future.

While cautioning that the trial is just a start, Lunning said he is feeling the same sense of nervousness and hope he experienced when administering the first CAR-T treatments in clinical trials for lymphoma not quite a decade ago.

"I hope that it is the continuation聽of better therapies for patients who ... have a lifelong condition that's quality-of-life altering," he said.