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Tapering off long-term Rx opioids: a first-hand account
By ROGER PARLOFF|October 15, 2018
"Laura," a chronic pain patient who tapered off opioids
Stanford Center for Continuing Medical Education
Quick Takeaway
  • A chronic pain patient, who tapered her opioid meds to zero, narrates her wrenching story.
  • Her account is part of an online course, teaching physicians how to lead such tapers.

“It was just an intense burning throughout the whole body,” says Laura. “It feels like you’re on fire, but it also feels like everything inside is, like, cut up or bleeding. Just everything’s raw, and a terrible kind of gripping.”

“Laura” is a chronic pain patient who is recounting a particularly agonizing moment in the trying process of reducing her opioid medication dosage—that is, “tapering.”

Today, after having successfully tapered down to zero over a two-year period, Laura reports feeling less pain than when she was on opioid therapy, with improved quality of life.

Laura speaks in her own voice, though her image is not shown. Her riveting first-person account forms part of a free, online continuing medical education seminar devised by Anna Lembke, MD, of Stanford University School of Medicine.

The course aims to help physicians address a pressing, widespread problem that few doctors have been trained to handle. In her course, Lembke likens tapering to chemotherapy—a temporary ordeal whose lasting rewards may make it worthwhile for many patients.

Pain doctors, advocates urge curbs on “forced opioid tapering”

An estimated 18 million people are now receiving chronic opioid therapy—meaning that they’ve been taking opioid medications for more than 90 days. Many were placed on the medication years ago for conditions for which those drugs are no longer believed to be helpful.

Many are also now taking the drugs at dosages that their current doctors view as posing risks that outweigh their benefits. In 2016, the Centers for Disease Control and Prevention urged physicians to exercise great caution when prescribing opioids at more than the equivalent of 90 milligrams of morphine (MME) per day, because of the dangers of crippling side-effects, overdose, and death.

But because most chronic opioid patients have developed severe physiological dependence on the drugs, patients often find the notion of reducing their dosage to safer levels—and enduring the excruciating pain that will be unleashed—terrifying, if not unthinkable.

In the CME course, Lembke advises physicians how to broach the topic of tapering with patients, and then how to lead patients through the process.

“I have led or initiated scores of tapers,” Lembke tells Opioid Watch in an email. “On any given week in clinic, I am advising three to five patients on how to taper down or off opioids and/or benzodiazepines.” Benzodiazepines, such as alprazolam (Xanax) and diazepam (Valium), are anti-anxiety drugs that, like opioids, can lead to dependency and addiction.

Anna Lembke, MD, assistant professor of psychiatry, Stanford University Medical Center. (Photo: Norbert von der Groeben)

Some may ask why Lembke is leading this course, since she is an addiction psychiatrist, rather than a pain medicine specialist.

“I’ve learned a lot from my colleagues in the pain world,” she says, referring to doctors at Stanford’s department of anesthesiology, perioperative and pain medicine. “I consult in their clinic, have attended their weekly interdisciplinary rounds, and have a courtesy faculty appointment in the department of anesthesiology here at Stanford.

“I think that people in the addiction world were, perhaps, attuned a little earlier than others to the need to help people taper off opioids, since we deal with withdrawal and craving on a routine basis. Pain doctors get a lot of training, at least historically, in how to get people onto opioids . . . but no training on getting people off of opioids.”

Laura does not gild the lily. Her account is daunting, and lacks a fairy-tale ending. But she reports less pain and improved outlook.

The most wrenching, but eye-opening, part of the 1.25-hour course is Laura’s narrative of how she started on opioids, built up to a dosage of more than 120 MME per day, and then tapered back down to zero over a two-year period. In an email, Lembke describes Laura’s taper as “voluntary, with a lot of nudging and support.” (Most of Laura’s account is contained in a 23-minute video embedded at the end of this article. Excerpts also appear in other course videos.)

Laura does not gild the lily. Her account is daunting, and lacks a fairy-tale ending. She still struggles with pain every day. But she reports less pain, more time awake and active, and improved outlook.

Laura’s Story

“It started my sophomore year of college,” Laura says. “I was 19 and it started as just like a burning kind of pain in my lower abdomen.”

The pain gradually got worse. All the tests came back negative. Most doctors were dismissive. “I had one that told me that it was in my head,” she recalls.

In 2006, after she gave birth by C-section, the pain got a lot worse. Several doctors diagnosed her condition as fibromyalgia, while another called it “chronic regional sympathetic pain syndrome.”

Finally, one started Laura on prescription opioids— two Vicodin tablets per day. It was the first medication that seemed to work for her.

(Courtesy: Stanford Center for Continuing Medical Education)

Until it didn’t. Then her doctor escalated her to Vicodin HP, meaning “high potency.”

When that stopped working, a different doctor, who’d taken over her care, added OxyContin on top of the Vicodin HP. He started her on two 20mg pills a day. Then he upped that to four pills a day.

The pills “definitely relieved the pain, and it was so nice to have a break from the pain.” But when they wore off, the pain “would come back worse.”

“They definitely relieved the pain,” Laura recounts, “and it was so nice to have a break from the pain.”

But when the pills wore off, the pain “would come back worse,” she continues.

Gradually, she noticed another change. “I would feel like the medication would work better if I took it when I was laying down and just could relax all my muscles. And so that became my pattern.”

She spent more and more time in bed. Her depression got worse.

(Courtesy: Stanford Center for Continuing Medical Education)

“My husband would . . .  want me to do certain things, but I just could not get that motivation,” she recalls.

Lembke comments, in a voiceover to the video, that Laura never made the link between her deteriorating function, her depression, and her opioid use.

In addition, Lembke says, at some point the opioids began medicating the withdrawal symptoms from Laura’s last dose, rather than alleviating her underlying condition.

“I was terrified because the pain felt a little bit different,” Laura says. “It was still like burning, but this was more like an intense gripping all through the muscles.”

After about five years on opioids, Laura’s family moved to the Bay Area from the town where they’d been living for 11 years.

After a move she recalls: “I didn’t have anyone who wanted to fill the dang opiates. That was scary.”

“I didn’t have doctors yet,” Laura recalls, “and I didn’t have anyone who wanted to fill the dang opiates. . . . That was scary.”

During a brief family vacation, her anxiety overcame her. “I couldn’t get out of bed even to take a shower. I felt like I was going to die.”

Her family cut short their trip and drove her straight to the Stanford hospital emergency room.

“I felt like we needed to do something. Like we needed to have a team of people helping me.”

The ER doctors transferred Laura to Stanford’s inpatient psychiatric unit. The doctors there were concerned about the high doses of opioids she was then taking—now more than 120 MME—and were reluctant to add medications that could treat her depression and anxiety until the opioids were reduced.

In the hospital Laura began a taper.

Lembke’s course is about outpatient tapers, which she says should usually be quite slow, with the patient helping set the pace.

Standard taper instructions for many other drugs call for 5 to 10 percent reductions every one or two weeks. But Lembke believes that that pace will be “intolerable” for many opioid patients, especially those who have been on high doses for long terms. They may need to drop “as little as 5 percent or less every two or three months,” with “even smaller decrements toward the end of taper.”

Inpatient tapers, on the other hand, are sometimes conducted far more rapidly, because of the 24-hour wraparound monitoring and care that’s possible there.

“My sense is that the slower outpatient taper is better,” Lembke tells Opioid Watch, “giving the brain time to adjust and teaching the patient new coping strategies. But some patients will need to go into the hospital for intermittent support, particularly if they have underlying comorbidities such as a mental illness, cardiac risk factors, etc.”

The first phase of Laura’s taper, in the hospital, was very rapid. (Lembke was not involved at this stage.)

“It was the most intense crazy pain I’ve ever had. Definitely a ten, but beyond that. It was the worst pain, basically, that I could imagine. . . . I just felt like I was on fire throughout my whole body. So the next morning . . . I was just like, I can’t do this. . . . And [the doctors] saw me crying and everything, so they adjusted things, and it became a lot better after that day. I was still in a lot of pain, but . . . I could at least do it.”

(Courtesy: Stanford Center for Continuing Medical Education)

When she was discharged, she had been transitioned off both the Vicodin and OxyContin, and was taking 15 mg of methadone per day instead. That means she had descended from more than 120 MME to roughly 40 MME per day in just three weeks.

The plan, Lembke explains, was for her to continue the taper as an outpatient. She was taught strategies for coping with her continued pain, including dialectical behavior therapy, mindful breathing, mental distraction techniques, mind-body work, and others.

“I did keep decreasing, but I had to go much slower,” Laura recalls. ‘It took nearly two years to taper completely off opioids. . . .The last stretch was the hardest.”

In fact, it was taking her so long to finish, she decided to get it over with in the hospital again. She checked herself into Stanford’s Comprehensive Inpatient Pain Program for a week.

Notwithstanding all she’d already been through, the pain was at least as bad as at the very beginning. Her description of this final, inpatient taper is the one that starts this article: “an intense burning throughout the whole body . . . like you’re on fire, but . . . like everything inside is . . . cut up or bleeding.”

“It’s a very emotional type pain, too,” she adds. “More than any other pain I’ve had, it’s a very depressive pain.”

Upon discharge, she was opioid free.

“Up to that point I had not felt a real deep type of depression and anxiety that was, like, the worst thing you could possibly feel. Even more than the pain.”

Yet it still wasn’t over. She had hit rock bottom physically, but not mentally.

“Up to that point I had not felt a real deep type of depression and anxiety that was, like, the worst thing you could possibly feel. Even more than the pain.”

After a month off opioids she began to improve. After six months “she could say she felt better than she did on opioids,” Lembke narrates on the voiceover.

“I’ve been rating my pain every day,” Laura says, “and I’ve been saying, like, four to five, which is actually good for me. . . . So hopefully it’ll just keep trending down that way.”

Her functionality has improved, too.

“The goal is to not really even lay down at all,’ she says.  “It’s difficult . . . [but] it’s way, way less now, and I try to be doing something throughout the whole day. . . . I am awake much more and doing a lot more. . . .

“My husband now sees the positive changes that I’m making. He’s a lot more hopeful.”

Lembke’s voiceover ends with her acknowledging that Laura still “struggles with pain every day.” But she reports that it’s Laura’s “lowest pain in over a decade.” She’s “exploring new career paths” and “considering having another child.”