In Tiny Doses, An Addiction Medication Moonlights As A Treatment For Chronic Pain | KCUR

In Tiny Doses, An Addiction Medication Moonlights As A Treatment For Chronic Pain

Sep 23, 2019
Originally published on September 23, 2019 11:28 pm

Lori Pinkley, a 50-year-old from Kansas City, Mo., has struggled with puzzling chronic pain since she was 15.

She's had endless disappointing visits with doctors. Some said they couldn't help her. Others diagnosed her with everything from fibromyalgia to lipedema to the rare Ehlers-Danlos syndrome.

Pinkley has taken opioids a few times after surgeries but says they never helped her underlying pain.

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

Recently, she joined a growing group of patients using an outside-the-box remedy: naltrexone. It is usually used to treat addiction, in a pill form for alcohol and as a pill or a monthly shot for opioids.

As the medical establishment tries to do a huge U-turn after two disastrous decades of pushing long-term opioid use for chronic pain, scientists have been struggling to develop safe, effective alternatives.

When naltrexone is used to treat addiction in pill form, it's prescribed at 50 mg, but chronic-pain patients say it helps their pain at doses of less than a tenth of that.

Low-dose naltrexone has lurked for years on the fringes of medicine, but its zealous advocates worry that it may be stuck there. Naltrexone, which can be produced generically, is not even manufactured at the low doses that seem to be best for pain patients.

Instead, patients go to compounding pharmacies or resort to DIY methods — YouTube videos and online support groups show people how to turn 50 mg pills into a low liquid dose.

Some doctors prescribe it off-label even though it's not FDA-approved for pain.

University of Kansas pain specialist Dr. Andrea Nicol has recently started prescribing it to her patients, including Pinkley. Nicol explains that for addiction patients, it works by blocking opioid receptors — some of the brain's most important feel-good regions. So it prevents patients from feeling high and can help patients resist cravings.

At low doses of about 4.5 mgs, however, naltrexone seems to work completely differently.

"What it's felt to do is not shut down the system, but restore some balance to the opioid system," Nicol says.

Some of the hype over low-dose naltrexone has included some pretty extreme claims with limited research to back them, like using it to treat multiple sclerosis and neuropathic pain or even using it as a weight-loss drug.

In the past two years, however, there's been a big increase in new studies published on low-dose naltrexone, many strengthening its claims as a treatment for chronic pain, though most of these were still small pilot studies.

Dr. Bruce Vrooman, an associate professor at Dartmouth's Geisel School of Medicine, was an author of a recent review of low-dose naltrexone research. Vrooman says that when it comes to treating some patients with complex chronic pain, low-dose naltrexone appears to be more effective and well-tolerated than the big-name opioids that dominated pain management for decades.

"Those patients may report that this is indeed a game changer," Vrooman says. "It may truly help them with their activities, help them feel better."

So how does it work? Scientists think that for many chronic pain patients, the central nervous system gets overworked and agitated. Pain signals fire in an out-of-control feedback loop that drowns out the body's natural pain-relieving systems.

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

Despite the promise of low-dose naltrexone, its advocates say few doctors know about it.

The low-dose version is generally not covered by insurance, so patients typically have to 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 Wharton School at the University of Pennsylvania, explains that drug companies don't have much interest in producing a new drug unless they can be the only maker of it.

"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 out to doctors and TV advertisements that have 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.

The drugmaker Alkermes has had huge success with its exclusive rights to the extended-release version of naltrexone, called Vivitrol. In a statement for this story, the company says it hasn't seen enough evidence to support the use of low-dose naltrexone to treat chronic pain and therefore is remaining focused on opioid addiction treatment.

Pinkley says she is frustrated that there are so many missing pieces in the puzzle of understanding and treating chronic pain, but she, too, has become a believer in naltrexone.

She has been taking it for about a year now, at first paying $50 a month out of pocket to have the prescription filled at a compounding pharmacy. In July, her insurance started covering it.

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


This story is part of NPR's reporting project with KCUR and Kaiser Health News.

Copyright 2019 KCUR 89.3. To see more, visit KCUR 89.3.

ARI SHAPIRO, HOST:

The opioid epidemic has left doctors looking for other painkillers that are both safe and effective. One alternative getting attention is an older generic drug, naltrexone. Reporter Alex Smith explains naltrexone is a surprising choice for pain since it's commonly used to treat opioid addiction.

ALEX SMITH, BYLINE: Fifty-year-old Lori Pinkley of Kansas City, Mo., has struggled with puzzling chronic pain since she was a teenager. Over the years, doctors diagnosed her with lots of possible causes, but she never found a surgery or pill that totally relieved her pain.

LORI PINKLEY: I hate opioids with a passion - absolute passion.

SMITH: Recently, she decided to try an out-of-the-box remedy, naltrexone, which is usually used to treat addiction. But it's not usually available in the doses that chronic pain patients need. In a YouTube video, a do-it-yourselfer shows how to turn one big pill into tiny fractional doses of naltrexone to make a low-dose version of the drug.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: We're going to put it in this thing that cuts the pill in half, and we're going to cut it right in half. It's got a little razor blade in there.

SMITH: This kind of information has circulated underground through wellness centers and word of mouth since the '80s. Naltrexone might seem like exactly the wrong drug to use. When taken for addiction, it works by shutting down opioid receptors, some of the brain's most important feel-good regions. In tiny doses, though, naltrexone seems to work completely differently.

University of Kansas pain specialist Dr. Andrea Nicol has recently started prescribing low-dose naltrexone to her patients.

ANDREA NICOL: What it's felt to do is not shut down the system but rather restore some balance to the opioid system.

SMITH: In the past few years, as interest in alternatives to opioids has grown, there's been a flood of new studies on low-dose naltrexone. Pain management specialist Bruce Vrooman has reviewed the current research on low-dose naltrexone. Vrooman says that when it comes to treating complex chronic pain, low-dose naltrexone appears to be more effective and well-tolerated than the big-name opioids that dominated pain management for decades.

BRUCE VROOMAN: And those patients may report that this is, indeed, a game changer. It may truly help them with their activities, help them feel better.

SMITH: So how does it work? Scientists think that in many chronic pain patients, the central nervous system gets overworked and agitated. Pain signals get stuck in an out-of-control feedback loop that drowns out the body's natural pain-relieving systems. But it's thought that low doses of naltrexone damp down that agitation and help kickstart the body's production of pain-killing endorphins, all with relatively minor side effects. Vrooman thinks it's time for low-dose naltrexone to undergo the same kind of large-scale studies that new prescription drugs receive.

VROOMAN: There's a need for prospective studies and randomized controlled trials to evaluate the clinical effectiveness of low-dose naltrexone, particularly when considered as an opioid alternative.

SMITH: Despite the promising research, drug companies have shown little interest in producing naltrexone in low doses. That leaves many patients making it for themselves or, like Lori Pinkley, having it custom-made at compounding pharmacies. It's a hassle, but she says it's worth it.

PINKLEY: 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, you know, able to do stuff.

SMITH: Pinkley has been taking low-dose naltrexone for about a year and a half now. She wishes more people at least knew it's an option.

For NPR News, I'm Alex Smith in Kansas City.

SHAPIRO: And this story is part of a reporting partnership between NPR, KCUR and Kaiser Health News.

(SOUNDBITE OF LAURA MISCH'S "NIGHT DRIVE") Transcript provided by NPR, Copyright NPR.