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An Unlikely Treatment Offers Hope For Chronic Pain Sufferers But Drug Makers See Little Incentive

Alex Smith
KCUR 89.3
Lori Pinkley of Kansas City has struggled most of her life to find relief from chronic pain.

Doctors generally agree that opioids are not a good choice for treating most chronic pain. But scientists have struggled to develop safe pain treatments that provide the same level of relief as opioids.

Now there's hope that might change. New research supports the use of a treatment method that’s lurked for years on the fringes of medicine. The question is whether it will remain stuck there.

One patient who's benefited from that treatment is Lori Pinkley of Kansas City. She still remembers the exact moment she recognized she had chronic pain, even decades later.

She was 15 years old, trying to get comfortable in her chair in English class, when she realized that she couldn’t remember the last time her body didn’t hurt.

“I was terrified,” Pinkley says. “I didn’t know what was going on. I was afraid to tell my parents. And I just lived with it for about 10 years.”

As an adult, Pinkley had endless disappointing visits with doctors. Some said they couldn’t help her. Others diagnosed her with everything from fibromyalgia to lipedema to Ehlers-Danlos syndrome.

She’s taken opioids a few times after surgeries but says they never helped alleviate the underlying pain.

“I hate opioids with a passion,” Pinkley says. “An absolute passion.”

For patients like Pinkley with complicated chronic pain, naltrexone may seem like exactly the wrong drug to take. It’s typically used to treat alcohol or opioid addiction by shutting down opioid receptors – some of the brain’s most important feel-good regions. And many people who take naltrexone for addiction often experience side effects like headache, muscle pain and cramps.

Since the 1980s, however, some patients have sworn by low doses of the drug to treat their chronic pain. On a YouTube video, a young woman with multiple health issues raves about it.

“After getting on it and being on it for a couple of months, I felt so, so happy about life. I felt healthy for the first time in my entire existence,” she says.

To be sure, some of the chatter over low-dose naltrexone has included some pretty extreme claims, such as its effectiveness in treating multiple sclerosis and neuropathic pain or even obesity. 

But in the past two years, there’s been a flood of new studies published on low-dose naltrexone. Many have found that a lot of these claims could actually be legitimate.

“A lot of the evidence that we have to date is superior to many of the medications that have been industry-sponsored and made available through marketing to patients or FDA-approved for specific conditions,” says Dr. Bruce Vrooman, an associate professor at Dartmouth’s Geisel School of Medicine who recently took part in a review low-dose naltrexone research.

Vrooman cautions there are still many questions about the treatment. But scientists believe that for many chronic pain patients, the central nervous system gets so overworked and agitated that pain signals almost turn into a feedback loop that drowns out the body’s natural pain relieving systems.

Credit Alex Smith / KCUR
Dr. Andrea Nicol of The University of Kansas Health System says she has successfully treated many chronic pain patients with low doses of naltrexone.

They suspect that low doses of naltrexone dampen that inflammation as well as kick-start the body’s production of pain-killing endorphins — all with relatively minor side effects.

Andrea Nicol is a University of Kansas Health System doctor who treats Lori Pinkley. She describes low-dose naltrexone as hitting the body’s reset button.

“What it’s felt to do is not shut down the system but restore some balance to the opioid system,” Nichol says.

Despite the promise of low-dose naltrexone, however, many doctors aren't aware of  it. It’s typically not covered by insurance, and patients must pay out of pocket to have it specially made at compounding pharmacies.

Advocates worry that the treatment is doomed to be stuck on the periphery of medicine because, as a 50-year-old drug, naltrexone can be made generically.

Patricia Danzon, a professor of health care management at the University of Pennsylvania's Wharton School, says drug companies simply don’t have much interest in  producing a new drug unless they can be its only manufacturer.

“Bringing a new drug to market requires getting FDA approval and that requires doing clinical trials,” Danzon says. “That’s a significant investment, and companies, unsurprisingly, are not willing to do that unless they can get a patent and be the sole supplier of that drug for at least some period of time.”

And without a drug company’s backing, a treatment like low-dose naltrexone is unlikely to get the big promotional push that has turned drugs like Humira or Chantix into household names.

“It’s absolutely true that once a product becomes generic, you don’t see promotion happening, because it never pays a generic company to promote something if there are multiple versions of it available and they can’t be sure that they’ll capture the reward on that promotion,” Danzon says.

In a statement, drug maker Alkermes, which has had huge success with the extended- release naltrexone drug Vivitrol, said it hasn’t seen enough evidence to support the production of low-dose naltrexone and that it was focused on increasing opioid-addiction treatment.

Lori Pinkley says she’s frustrated there are so many missing pieces in the puzzle of understanding and treating chronic pain. She’s been taking low-dose naltrexone for about a year now and while she says the pain relief isn’t complete, it’s definitely an improvement.

“I can go from having days that I really don’t want to get out of bed because I hurt so bad to within a half hour of taking it, I’m up and running, moving around, on the computer, able to do stuff.”

Alex Smith is a health reporter for KCUR. You can reach him at alexs@kcur.org.

As a health care reporter, I aim to empower my audience to take steps to improve health care and make informed decisions as consumers and voters. I tell human stories augmented with research and data to explain how our health care system works and sometimes fails us. Email me at alexs@kcur.org.
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