Among the deeply personal topic of illnesses and medical conditions, autoimmune disorders are often invisible and misunderstood by the public. However, when Springfield area resident Nancy Fagan, a former nurse, found a treatment for her rheumatoid arthritis, she wanted to share it with the world.
RA is a chronic autoimmune disorder in which the body attacks itself, causing swelling, pain, stiffness, and loss of function in joints. People with RA may also experience fatigue, occasional fevers, a loss of appetite, and secondary issues in the heart, lungs, blood, nerves, eyes and skin. While the causes of RA, which affects about 1% of the population, are not fully understood, it is known that genetics and environmental factors both contribute to it. Women are also three times more likely to be affected by RA than men.
Fagan developed RA about three decades ago. By 2005, the joint pain, fatigue and other symptoms forced her to leave her nursing career.
Since her diagnosis, Fagan said she has taken myriad “powerful meds” to control the symptoms and slow damage to her joints. While the side effects — including low levels of white blood cells and squamous cell carcinoma — were sometimes difficult to contend with, Fagan said she was “lucky” to have the medicines because without them, the disorder would have done more extreme damage to her body and quality of life.
Fagan had long had “well-meaning” people offer advice on how to “fix” her RA, she said. Often, it would be suggestions to change her diet or other lifestyle tweaks. While she understood that people were trying to help, she said it was hard not to become frustrated.
Then, Fagan’s husband recommended she read a 2014 article by Michael Behar in New York Times Magazine, titled, “Can the Nervous System Be Hacked?” The article explained that a medical trial was being conducted in Europe to test the effect on RA of an implant that electrically stimulates the vagus nerve.
The vagus nerve, located behind the carotid artery on either side of the human neck, sends signals from the brain to every major organ in the body. A vagus nerve-stimulating implant was approved by the federal Food and Drug Administration to treat epilepsy in 1997 and depression in 2005. The FDA also approved an external vagus stimulator to treat cluster headaches and migraines.
The method of treatment was “enticing” to Fagan, because “there was science behind it. The body is very mechanical. It made sense to me,” she said. She contacted SetPoint Medical, the company running the European trial, but was told an American trial was not yet open. A few years later, the company reached back out to her to participate in a three-year, 250-patient, randomized, double-blind study being set up in the U.S.
Despite her initial excitement, Fagan said she had concerns. She would have to have a neurosurgical procedure to implant the device. There was also a time commitment, with weekly monitoring in Stamford, Connecticut, two hours from her home.
“It’s hard to give up your time to a disease,” Fagan said.
The most concerning factor for Fagan was that she would need to discontinue all her RA medicines. If she were in the control group and the implant was not receiving a wireless signal to provide the stimulation, it would leave her without any method of controlling her pain and symptoms.
“It’s not an easy decision to say, ‘Oh, sure. You can experiment with my body,’” Fagan said.
However, she said, her health insurance had recently changed, and one of the medicines she relied on for her RA would cost $12,000 each year. She weighed the expense and side effects of her medicines with her concerns about the procedure and study.
In 2021, Fagan traveled to Long Island, New York to have the stimulation device, which she described as the size of a bullet, implanted.
Despite her hopes, Fagan suspects that she was put in the control group because after about three weeks, once the medicines had left her system, she began feeling terrible. RA symptoms that had been kept at bay by the medicines came back again. By the end of the summer, she was seriously considering dropping out of the study, so she could return to her regimen of prescriptions and get relief. However, when a nurse told Fagan that after four months, all participants would be given the stimulation, she decided to stick it out. She is glad she did.
“I started the stimulation and within, I’d say, three weeks I was feeling good,” Fagan said.
Each night while Fagan sleeps, the implant vibrates for about one minute. It is not disruptive enough to wake her, she said, but if she is already awake, she can feel the sensation. Sometimes, it startles her. Once per week she must wear a collar to charge the device. “It feels a little like Star Trek,” she said.
It has been about a year and a half since Fagan began receiving the stimulations. Her condition has improved to the point that she was able to complete graduate school and become a full-time writer. “I haven’t been able to work full-time in 20 years,” she said. While the damage to Fagan’s joints cannot be repaired, she said the swelling and pain have disappeared, adding, “I have energy. I can participate in life.”
Fagan decided to share her story and submitted an essay to the magazine Kaleidoscope: Exploring the Experience of Disability through Literature and the Fine Arts, an award-winning semi-annual publication for United Disability Services. She wanted more people with RA to know about this “important option. It’s a unique experience. I felt it is important to share with the wider community,” she said, adding, “Maybe this is the pharmacology of the future.” After all, she pointed out that hearts are kept working by pacemakers. She is somewhat concerned that if the implant is approved to treat RA by the FDA, pharmaceutical companies may try to use their influence to interfere with widespread rollout of the therapy.
Fagan still travels to Connecticut every three months for monitoring, which will last another year. “It’s a little eerie,” she said. “They’re monitoring me from some central office, somewhere.” She said she was grateful to her husband for going through the implant and monitoring sessions with her. It is difficult being the partner of someone with a chronic illness, she said.
The battery in the device is expected to be exhausted in about a decade and Fagan would likely need to have it replaced. Despite her positive experience, she said she is not sure she would have a new device implanted. “If it was now, I’d do it, but who knows what my life will look like [then],” she explained.
As an ongoing trial examining experimental treatment, Fagan said, she is not in contact with other participants and does not know how they are faring. Fagan urged people with questions about her experience and the implant to reach out to her at nancy@nancyjfagan.com. Her article, “Good Vibrations,” appeared in Issue 88 of Kaleidoscope: Exploring the Experience of Disability through Literature and the Fine Arts. It can be read for free at tinyurl.com/27s4r8sh.
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