Medical Marijuana Saved Me After Forced Opioid Tapering

By Christine Kucera

I can tell you outright that medical marijuana saved my life!  

I am an intractable pain patient who was harmed in 2019 when the chief medical officer at my well-known health institution decided to implement mandatory system-wide opioid policies for all doctors and patients, based on the CDC’s opioid guideline.

I am not opioid naive, don't have adverse reactions to opioids (other than some don't work on me), and I wasn't misusing or even at risk of overdose. But that didn't matter to the CMO. He forced my pain management provider to taper all his patients on opioids or risking losing his position.

I was subsequently tapered to 90 MME (morphine milligram equivalent), which was a third of the well-managed opioid regimen I was on for over 30 years.  Messed up, right?  

Medical marijuana/cannabis was the alternative of last resort for me. Unlike opioids, I'm extremely sensitive to marijuana, and need to be able to think and talk. As the taper continued, my ability to cope with unmanageable, agonizing pain went bye-bye. I couldn't sit, stand, lay down or sleep without the pain being unbearable. I was literally being tortured to death.  

I became severely ill, my health destabilized, and I was hospitalized numerous times. I became depressed and suicidal, reaching out to everyone for help as hopelessness set in. Thoughts about transitioning to death were my constant companion. 

I had a choice: fight with what's available or give in to despair. I refused to give up hope and decided to try medical marijuana. After discussing it with my provider, I applied for a Massachusetts medical marijuana license. Once approved, I immediately went to a dispensary and the experimentation began. 

Everyone will have different experiences with cannabis. Just like opioids, it depends how your body metabolizes it. I had more than a few negative experiences, but refused to give up. It took me 2 years of experimentation to figure out the right dose, strain (sativa, indica, hybrid) and preparation (flower, edibles, tinctures, topical).  

After a lot of trial-and-error, I found my goldilocks zone. It was micro dosing a 1:1 tincture (equal parts THC and CBD) and applying a 1:1 cream. That regime saved my life!  

Key to Success: Start Slowly 

Some important things I learned along the way:  

For naive patients using cannabis for the first time, I recommend starting with a couple drops of tincture (0.25ml to 0.5 ml under the tongue) every 6-8 hours. It can take upwards of 2 hours to feel the full effects. Do not consume additional tincture too soon or you will potentially experience a compounding effect, producing unwanted side effects.

Increasing the dose, amount and frequency should only be attempted once your body adjusts. Everyone has different titration periods, which can take days or weeks. Experimenting is the only way to figure out what will work for you personally.

I suggest going slowly, incrementally increasing the dose by 0.25ml (0.5ml, 0.75ml, 1ml and so forth) over days to weeks until you reach optimal effect. I personally use <0.25ml during the day and <0.5ml at night. During my experimentation period with the 1:1 tincture, I would try increasing every 3 days.

There are many types of tinctures. I do not recommend jumping straight to a full strain tincture, using indica or sativa, without building a tolerance first

The same goes for edibles. Cut them in half or even a third to start with. Remember it can take up to 2 hours for edibles to work, so don't take more or you may experience unwanted side effects. I could successfully microdose edibles 2-4 times daily, depending on need.  

Topicals are amazing and work! I prefer the ointment over creams and gels, but the costs can add up. You can make your own inexpensive topical by mixing a tincture with a favorite ointment or cream.  

For first time users, I don’t recommend smoking marijuana flower or buds until you've first built-up tolerance with a 1:1 tincture or edibles. Smoking has a much faster mode of action and it can be difficult to manage the unwanted side effects.  

If you're willing to experiment, I recommend smoking at night at home when you have no responsibilities. I found that was best. Start slowly with one very small hit, it doesn't take much. Wait approximately 15-20 minutes before deciding to inhale a second or third hit. The side effects can be bad if you smoke too much, especially if you haven't built up tolerance.  

Always research the side effects and talk with staff at the dispensary. They can help with selecting flower or edibles that have pain, sleep, and mood helping properties. 

If you live in a state where medical marijuana is legal, get a license or card to protect yourself from discrimination, pain management contracts, and urine drug tests. I informed my providers and gave them a copy of my license to put in my medical health records.  

Before you use marijuana, be sure to talk with your prescribing provider, as you don't want to unintentionally breach your pain contract. If you smoke at home, landlords may also be an obstacle. 

The war on drugs propaganda is only meant to illicit fear. Educate yourself about the benefits of marijuana. It's not a gateway drug. Utilized responsibly, with the right strain, dose and preparation, marijuana can help reduce pain, inflammation and anxiety. It is absolutely worth trying.   

Lastly, don't give up! 

Christine Kucera lives with psoriatic arthritis, spondyloarthropy, spondylitis, polyarthritis, sacroiliitis, degenerative joint disease, dermatomyositis, mixed connective tissue disease, spinal radiculopathy, hypoparathyroidism, rare endocrine tumors, psoriasis, endometriosis stage IV, pelvic adhesive disease, and other painful conditions.

Prior to becoming disabled, Christine was a healthcare research systems developer and analyst for federally funded CMS, AHRQ, and NIH grants and programs.

Pain Patients Feel Abandoned by U.S. Healthcare System

By Pat Anson, PNN Editor

Many pain patients feel abandoned by the U.S. healthcare system and say it’s increasingly difficult to find a doctor or obtain opioid analgesics, according to a large new survey by Pain News Network. Some patients have turned to other substances – both legal and illegal -- for pain relief, and almost a third have contemplated suicide.

Nearly 3,000 pain patients or their caregivers participated in PNN’s online survey in the final weeks of 2023.

Over 90% of those with opioid prescriptions said they faced delays or problems last year getting their prescriptions filled at a pharmacy. Nearly a third were hoarding opioids because of fear they’ll not be able to get them in the future. And over 40% rated the quality of their pain care as “bad” or “very bad.”

“I’ve given up hope of getting help for chronic, severe pain in this country. I’m planning to move to where I can receive humane treatment,” one patient told us.

“The hoops in which I have had to jump through to get the minimal help that I have gotten throughout the years is ridiculous,” said another. “I have a very extensive and very well documented history of mental and physical trauma, but I am still treated as a drug seeker. I am currently unable to get any form of medication.”

“Every pain patient worries, from one month to the next, if their doctor will cut them off opioids or force taper them to such low levels that there is NO pain relief,” another patient wrote.

HOW WOULD YOU RATE THE CURRENT QUALITY OF YOUR PAIN CARE?

“I’ve spent the last 8 years explaining my inadequate pain control and lack of sleep that has fallen on deaf ears. I’ve tried so many different doctors and now feel like no one cares at all. Honestly feel as though they would rather see me die and be rid of me,” said another.

‘Impossible to Find Help’

About one in every four patients said they were tapered to a lower dose or taken off opioids — but only a small number were referred to addiction treatment. Less than one percent of those who stopped opioid treatment said it improved their pain and quality of life.

One in five patients couldn’t find a doctor to treat their pain. Many were abandoned by a physician or had a doctor who retired from clinical practice.   

• 20% Unable to find doctor willing to treat pain

• 14% Doctor retired or left their practice  

• 12% Abandoned or discharged by a doctor

• 27% Tapered to a lower dose or taken off opioids

• 3%   Received a referral for addiction treatment

• 0.6% Stopped opioids & pain and quality of life improved

“My primary retired. Then my rheumatologist moved to another state. Now most doctors don't prescribe and it's impossible to find help,” a patient wrote.

“Every pain management office in my area were nothing but nightmares waiting to happen. And every person I talked to… were solely concerned with either getting people off of pain medication or reducing the amount of medicine by over half,” said another.

“Doctors I talked to said they felt like they had a gun to their head and that they are being watched, so they won't prescribe or prescribe very little,” a patient wrote.

“My insurance just capped opioids to 7 days a month, so I have to choose whether to buy the other 3 weeks and cut back on my food budget, or take to my bed for 3 weeks a month,” said another.

“I am unable to find a new doctor to treat pain. A couple of years ago I was tapered from a previously working amount of pain med, so now I have daily severe pain and too many sleepless nights from pain. But the doc doesn't care. It seems my clinic system only sees me as an addict,” wrote another pain patient.

Risky Choices

With pain care increasingly difficult to find, nearly a third of patients said they considered suicide in the past year because their pain was so severe. Others adopted risky behaviors, such as hoarding opioid medication, obtaining opioids from another person, buying illicit substances off the black market, or using alcohol, cannabis and other substances for pain relief.    

• 29% Considered suicide

• 32% Hoarded opioid medication

• 30% Used cannabis for pain relief

• 14% Used alcohol for pain relief

• 11% Used kratom for pain relief

• 11% Obtained prescription opioids from friend, family or black market

•  4%  Used heroin, illicit fentanyl or illegal substance for pain relief

“I was taken off my prescription opioid twice and attempted suicide twice because the other prescriptions were not effective,” one patient told us.

“I have a therapist that has been helpful, because I have considered taking my life. He is concerned that I'm not getting adequate pain relief,” said another.

“Since suicide is against my faith, I prayed for death,” one patient wrote. 

“I know so many people that have stopped going to doctors and started buying heroin off the street. They say it’s easier and cheaper,” another patient said.

“The obscenely high cost of medical marijuana made me suffer so much financially that I have been unable to make use of the compassion center’s offerings,” wrote another patient. “Why on earth do we let plants be illegal in the first place, then let them be sold for so much money that they are almost impossible to afford on a disability income?”

“We desperately need to get away from the denial of opioids as a way to deal with this crisis. So far, the results of these laws on opioids have been an abject failure. Deaths have not been reduced, but actually increased due to chronic pain patients having to resort to suicide,” said another.

“I hope that all the people who are in charge of this will one day feel what I do and have some grasp of the pain situation people are forced to live through. They take care of their dogs and cats better than human beings,” a patient said.

“I have considered suicide multiple times over the past few years. These laws, while meant to curb illicit abuse of these medications, are harming legitimate patients like myself,” another patient wrote. “The worst part is that, for the time being, it looks like things are going to get much, much worse for me and the millions of others like me.” 

PNN’s online survey was conducted from November 13 to December 31, 2023. A total of 2,961 U.S. pain patients or caregivers participated. We’ll be releasing more results in the coming days.  

Why We Need to Study Suicides After Opioid Tapering

By Stefan G. Kertesz, MD

How can we understand and prevent the suicides of patients in the wake of nationwide reductions in opioid prescribing?

Answering that question is the passion and commitment of our research team at the University of Alabama at Birmingham School of Medicine. Our study’s name, “CSI: OPIOIDs,” stands for “Clinical Context of Suicide Following Opioid Transitions.” Let me tell you why we are doing this work, what we do, and how you can help.

Opioid prescribing in the US started falling in 2012, after a decade of steady increases. The original run-up in prescribing was far from careful and a judicious correction was needed. A judicious correction, however, is not what happened. Instead, opioid prescriptions fell, rapidly, to levels lower than those seen in 2000. It may require a book to understand how prescribers swung so easily from one extreme to another.

For the 5 to 9 million patients who were taking prescription opioids long-term, reductions and stoppages were often rapid, according studies in the US and Canada. In one Medicare study, 81% of long-term opioid discontinuations were abrupt, often leaving patients in withdrawal and uncontrolled pain.

Prescription opioid reductions are not always good, and not always bad. For some patients, modest reductions are achievable without evident harm, especially if a reduction is what the patient wants to achieve. For others, the outcomes appear to be harmful. Several who serve on our research team have witnessed friends, family, or patients deteriorate physically or emotionally following a reduction. Some attempted suicide and, tragically, others died by suicide.

Large database analyses tell a similar (and nuanced) story. In research derived from Kaiser Permanente, Veterans Health Administration, Oregon’s Medicaid program, and Canadian databases, patient outcomes were diverse. Some researchers found no safety problems after opioid reductions, but others describe suicides, mental health crises, medical deteriorations, and overdoses at frequencies that are too common to ignore. These are not acceptable outcomes. 

The shocking nature of patient suicides led some experts to jump to conclusions, arguing that acute withdrawal from opioids explains all the bad outcomes, and that slow reductions or tapers prevent harm. But that’s not true. In two studies, mental health crises or overdoses occurred at elevated rates a full year after modest dose reductions, such as a 39% reduction in one national study.

Jumping to conclusions about why something bad happens is another way of saying, “We don’t want to investigate.”

After a suicide, we think the right step – the respectful step – is to ask questions: What happened here? Why did it happen? What were all the factors in a person’s life that might have played a role in their death? And where does an opioid reduction fit, or not fit, into explaining what happened?

Asking those questions is crucial. The decision to end one’s life through suicide is rarely simple, but understanding the person’s history and reasoning will spur better approaches to care. Approaching these questions through in-depth rigorous research, rather than pretending we already know why suicides happen, could also induce leaders to take them more seriously than they have to date.

Just like investigators examining a plane crash, we intend to collect the full story of what happened, carrying out detailed interviews and, where possible, reviewing medical records. Studying just one case can tell us a great deal. But our goal is to study over 100 patient suicides.

This approach is called a “psychological autopsy interview.” That phrase can sound a bit daunting. In reality, it’s an interview where we ask about the person’s life, their health, their care, and what happened before they died.

How You Can Help

We seek people who have lost somebody, such as a close family member or good friend, to suicide after a prescription opioid reduction. We are studying deaths in the US among veterans and civilians, and hope to interview more than one person for each suicide.  

Interview topics range from health and social functioning, to care changes prior to death, to whether the person who died felt a sense of connection to others or perceived themselves to be a burden. To our knowledge, no other team is attempting to do this work.  

We face a singular challenge: recruitment. That’s why we need your help. For the last 60 years, studies of suicides involved collaboration with medical examiners in a state or county. That option is not available to us, because medical examiners usually don’t know about health care changes that took place prior to a person’s death.  

There is no master list of suicides that occurred following a reduction or stoppage in opioids. Yet those deaths are precisely the ones we need to learn about. The only way we can document those cases is to reach out to the public and ask if survivors are willing to come to us, either online or by phone (1-866-283-7223, select option #1). 

If enough survivors are willing to participate in this initiative, then we can begin to describe, understand, and prevent future devastating tragedies.  

For the people who are considering participation in the study and wondering what risks are involved, let me offer some reassurance. First, there is an online questionnaire housed on a very secure server. A person can start it and stop at any point if they choose, no questions asked.  

Also, this study is protected by two federal “Certificates of Confidentiality.” These federal orders prohibit release of identifiable data under any circumstances, even a court order.  We are aware that some families are pursuing legal action, and this was a major factor in our decision to take this extra step to protect participants. 

When a person completes the survey, we will evaluate their answers to see how confident they were that the death was likely a suicide, and whether the death occurred after a prescription opioid dose reduction. If they meet these criteria, then we will reach out to discuss further participation in the research study.  

What follows is a more detailed informed consent process. There is a modest incentive ($100) for being interviewed, and a smaller one if the person can work with our medical record team. It is not necessary for a survivor to have access to a loved one’s medical records.  

So far, the interviews we’ve conducted have been serious, warm and thought-provoking. At the outset, we were concerned that these interviews could be upsetting. We learned from reading the literature on this type of interview, that the individuals who agree to participate usually have a desire to share their feelings about their loved one’s death and tend to perceive the interview as a positive experience.  

In the long-run, we hope that after looking at 110 suicides, we can formulate recommendations and programs for care, without leaping to any conclusions. We want to help save lives.  

A study like this is clearly not the only answer to an ongoing tragedy. Research is almost never a “quick answer” to anything. That’s why many members of our team have already engaged in direct advocacy with federal agencies. It was 4 years ago that several of us urged the CDC to issue a clarification regarding its 2016 Guideline on Prescribing Opioids for Pain. A revised CDC guideline was released last year, but we’ve noticed that the health care situation faced by countless patients with pain remains traumatic and unsettled.

These events are hidden and need exploration. We need to take this next step and learn more to prevent further tragedies and lost lives.

If you would like to enter the screening survey for this research, please click here.

If you would like to learn more general information about our study, click here.

If you know a group of patients or clinicians who would like a flyer, presentation, or a link to our study, please let us know by email at csiopioids@uabmc.edu or stefan.kertesz@va.gov

Stefan G. Kertesz, MD, a Professor of Medicine and Public Health at the University of Alabama at Birmingham School of Medicine, and a physician-investigator at the Birmingham Alabama Veterans Healthcare System.  Stefan is Principal Investigator for the CSI: OPIOIDs study.

Views expressed in this column are those of Dr. Kertesz and do not represent official views of the United States Department of Veterans Affairs or any state agency.

For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.”  A comprehensive set of resources can also be found at this link.

JAMA: Patients on Long-Term Opioids Often ‘Irrational’

By Pat Anson, PNN Editor

Do pain patients on long-term opioid therapy make irrational decisions? Is their mental capacity so diminished by opioids that they shouldn’t be involved in treatment decisions with their doctors?

The answer to both questions is often yes, according to a controversial new op/ed published in JAMA Internal Medicine. At issue is a recent update to the CDC’s opioid prescribing guideline, which calls for shared decision-making (SDM) when a prescriber considers tapering a patient or abruptly discontinuing their opioid treatment. The guideline was revised last year after reports of “serious harm” to patients caused by forced tapering.

“In situations where benefits and risks of continuing opioids are considered to be close, shared decision-making with patients is particularly important,” the 2022 guideline states.

But that advice about consulting with patients goes too far, according to the lead author of the JAMA op/ed, Mark Sullivan, MD, a professor of psychiatry at the University of Washington and a longtime board member of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group.

“The value of SDM has been recognized for many years but also has its limitations, including where patients make irrational or short-sighted decisions,” Sullivan wrote. “Long-term opioid therapy induces a state of opioid dependence that compromises patients’ decisional capacity, specifically altering their perception of the value and necessity of the therapy; and although patients with chronic pain are not usually at imminent risk of death, they often can see no possibility of a satisfying life without a significant and immediate reduction in their pain.”

Sullivan and his two co-authors, Jeffrey Linder, MD, and Jason Doctor, PhD, have long been critical of opioid prescribing practices in the U.S. In their conflict of interest statements, Sullivan and Doctor disclose that they have worked for law firms involved in opioid litigation, a lucrative sideline for several PROP members.

Sullivan, Linder and Doctor call for more “structured” decision-making that includes the patient’s family and friends, “motivational interviewing” of patients about opioid risks and treatment goals, and education about non-drug alternatives such as yoga and meditation.

“We believe that a fully individualized, unstructured decision-making process will not be adequate to protect patients receiving long-term opioid therapy,” they wrote.

“In the case of opioid prescribing, and especially opioid tapering, working to persuade the patient is almost always the best clinical strategy. But there are circumstances where tapering should occur even if the patient objects.”

— Dr. Mark Sullivan

And what happens if a patient refuses to have their dose reduced? The op/ed doesn’t explicitly state it, but in an email to PNN, Sullivan said forced tapering would be acceptable in some situations.

“In the case of opioid prescribing, and especially opioid tapering, working to persuade the patient is almost always the best clinical strategy. But there are circumstances (opioid use disorder, diversion, serious medical risks) where tapering should occur even if the patient objects,” Sullivan wrote.

Opioid diversion by patients is actually rare. The DEA estimates that less than one percent of oxycodone (0.3%) and hydrocodone (0.42%) will be used by someone they were not intended for.

As for patients on opioids behaving “irrational,” Sullivan and his co-authors cite an op/ed published 33 years ago in The New England Journal of Medicine (NEJM). But that article doesn’t even discuss opioids or tapering, it’s about whether patients and doctors should collaborate in making decisions about end-of-life medical care.  It also makes an important disclaimer that “even the irrational choices of a competent patient must be respected if the patient cannot be persuaded to change them."

Sullivan rejects that approach to opioid treatment.

“We cite (the NEJM article) to demonstrate that SDM does not exclude or prevent irrational decisions,” he wrote in his email.  “You are right that we do not endorse the conclusion you cite, that patient’s irrational decisions must be respected.”

In a rebuttal to Sullivan’s op/ed also published in JAMA Internal Medicine, Mitchell Katz, MD, and Deborah Grady, MD, dispute the notion that a patient’s choices shouldn’t be respected.

“Primary care professionals generally highly value the inclusion of the patient’s perspective in decision-making, consistent with the principles of patient autonomy and self-determination, and are loathe to go against a patient’s wishes,” they wrote.

“As primary care professionals, we have found it helpful to tell patients that it is not recommended to take more than a specific threshold of opioids and that we do not want to prescribe something that is not recommended. However, that does not mean sticking to rigid cut points for dose and duration of opioid use, abandoning patients, or having them undergo too rapid a taper.”

Others questioned JAMA’s decision to publish Sullivan’s op/ed.

“While I recognize the editors’ legitimate intellectual interest in providing a forum for open discussion on the opioid policy space, I question their decision to publish an editorial that represents an ongoing call for broad, ill-defined reductions in opioid prescribing,” said Chad Kollas, MD, a palliative care specialist who rejects the idea that patients shouldn’t be involved in their healthcare choices.

“Errantly embracing a lower evidentiary standard for medical decision-making capacity creates an unacceptable risk for harm to patients with pain by violating their rights of medical autonomy and self-determination.”

Opioids were once commonly prescribed in the U.S. for both acute and chronic pain, but those days are long over. Opioid prescribing has been cut in half, to levels not seen since the 1990’s. And many patients today have trouble just getting their prescriptions filled at pharmacies due to opioid shortages.

Despite that, fatal overdoses have climbed to record levels, with illicit fentanyl and other street drugs involved in the vast majority of drug deaths, not prescription opioids.

Australian Guideline Calls for Safer Opioid Tapering

By Pat Anson, PNN Editor

Public health experts in Australia have released what is being called the first international guideline to help primary care doctors safely reduce or stop prescribing opioids to adults with chronic non-cancer pain.

The Guideline for Deprescribing Opioid Analgesics contains 11 recommendations developed by a panel of general practitioners, pain specialists, addiction specialists, pharmacists, nurses and physiotherapists. The guideline emphasizes slow and individualized tapering for patients when long-term opioid use does not improve their pain and quality of life or when they experience adverse side effects. Tapering is not recommended for anyone nearing the end-of-life.

“Internationally, we were seeing significant harms from opioids, but also significant harms from unsolicited and abrupt opioid cessation. It was clear that recommendations to support safe and person-centred opioid deprescribing were required,” said lead author Aili Langford, PhD, a pharmacist and Research Fellow at Centre for Medicine Use and Safety, Monash University.

Millions of pain patients in the U.S. were tapered or cut off cold turkey after the CDC released its 2016 opioid prescribing guideline. Both the American Medical Association and the FDA warned that rapid tapering was causing “serious harm” to patients, including withdrawal, uncontrolled pain, substance abuse and suicide.

In response to that criticism, the revised 2022 CDC guideline took a more cautious approach to tapering, recommending a dose reduction of just 10% a month, a much slower rate than the 10% a week that the agency previously recommended.

The U.S. Department of Veterans Affairs and Department of Defense (VA/DoD) also modified their approach to tapering, which at one time called for tapers of up to 20% every four weeks.  The updated VA/DoD guideline says there is “insufficient evidence to recommend for or against any specific tapering strategies.”

The Australian guideline doesn’t get caught up in fractions or percentages. It simply calls for “gradual tapering” that is tailored to each patient’s needs and preferences. A key recommendation is to discuss tapering as early as possible with patients, to develop a plan when they are first prescribed opioids.  

“Shared decision-making and ensuring that patients have ways to manage their pain are essential when a deprescribing plan is being discussed,” said Liz Marles, MD, a general practitioner and clinical director at the Australian Commission on Safety and Quality in Health Care.  

“These new guidelines further support appropriate use of opioid analgesics and how to safely prescribe and stop prescribing them. They ask clinicians to consider reducing or stopping opioids when the risk of harm outweighs the benefits for the individual.”

One in five adults in Australia have chronic pain, but few actually wind up taking opioids long-term. The guideline authors estimate that only 5% of opioid “naive” patients become long-term users, well below misleading claims by anti-opioid activists that over 25% of pain patients develop opioid dependence or opioid use disorder.

“I am curious to know how many people who are on chronic opioid therapy feel a need to be tapered,” said Lynn Webster, MD, a pain management expert and Senior Fellow at the Center for U.S. Policy.  “Only 5% of opioid-naïve patients remain on opioids for 3 months or longer. Considering the fact that about 10% of the population has severe enough pain to affect quality of life, this statistic argues against the theory that just being exposed to an opioid leads to chronic opioid use.”

Webster says most of the recommendations in the Australian guideline are practical, but he’s concerned that some of the evidence used to support them is “misunderstood and misleading.”

“They make it abundantly clear that tapering should not be forced and that there are serious consequences to forced tapering. But they also use the common yet flawed statement that there is little evidence that opioids are effective for chronic non-cancer pain. Of course, the lack of evidence is not evidence,” Webster said.

Although opioids have been used for thousands of years for pain relief, the clinical evidence for or against their use remains thin. Most of the evidence used to support the Australian guideline was deemed by the authors to be insufficient, unclear or weak. Only one of the 11 tapering recommendations was supported by evidence of “moderate certainty.”

Study Links Rx Opioids to Higher Suicide Risk

By Pat Anson, PNN Editor

Suicide is an all-too-common experience in the pain community. About one in every ten suicides in the U.S. involves chronic pain, and in a PNN survey of nearly 6,000 pain sufferers, an astounding 49% told us they thought about suicide because their pain was so poorly treated.

Many of those patients lost access to opioid pain medication after the CDC released its opioid guideline in 2016. The resulting backlash against opioids by regulators and law enforcement had predictable results on people in pain, resulting in an untold number of suicides by mothers, husbands, veterans, advocates and others – that the CDC didn’t even bother to track.

Just a few months ago, a Georgia man and his wife died by suicide after the doctor who was treating the husband had his license to prescribe opioids suspended by the DEA.

A new study is now casting doubt on the association between suicide and cutbacks in opioid prescribing. Researchers at Columbia University Mailman School of Public Health looked at U.S. prescription data from 2009 to 2017 and found the suicide rate was significantly higher in census regions where there was more high-dose, long-term opioid prescribing.

“The relationship between opioid prescribing and suicide risk is a complex one. This is particularly the case when people have their opioids tapered,” said Mark Olfson, MD, professor of epidemiology at Columbia School of Public Health.

“People can become desperate if their pain is not well controlled. Yet opioids also pose a greater risk of overdose than any other drug class and approximately 40 percent of overdose suicide deaths in the U.S. involve opioids. At a population-level, the national decline in opioid prescribing over last several years appears to have reduced the number of people who died of suicide.”

The study findings, published in the American Journal of Psychiatry, are surprising because they cover a period when the U.S. suicide rate was steadily rising, fueled by factors such as mental illness, substance abuse, economic hardship and social isolation. The study ignores those societal issues and focuses solely on opioid medication as the driving force behind suicides.   

Olfson and his colleagues found that geographic regions with the biggest declines in opioid prescriptions tended to have the largest declines in suicide deaths, including suicide overdoses that involved opioids. If the national decline in opioid prescribing had not occurred, they estimate there would have been 3% more suicide deaths overall, and 10.5% more suicide deaths involving opioids.

“It is not surprising that regional declines in opioid prescribing were found to ameliorate local trends in suicide deaths. These findings reinforce the importance of safe opioid prescribing practices and proper disposal of unused opioids,” they reported. “While some patients with pain need and benefit from opioids without risk, those for whom opioids are prescribed should be evaluated and, if necessary, treated for co-occurring mental health disorders that might otherwise increase their risk of suicide.”

‘Confusing and Contradictory’ Findings

The new study is at odds with recent research in British Columbia, which found that tapering or stopping opioid therapy significantly raises the risk of a patient dying from an accidental or intentional overdose. A large 2021 study of U.S. patients on long-term opioid therapy also found that tapering raises the risk of a non-fatal overdose and attempted suicide.

There are “serious methodological problems” with the Columbia study, according to Stefan Kertesz, MD, an associate professor at the University of Alabama at Birmingham, who is leading a federally funded study of pain patient suicides. Kertesz says the study’s reliance on prescription data overlooks all the other issues in a community that may contribute to suicide.

“Let’s use common sense: If communities can change their level of opioid prescriptions, then surely they can change in countless other ways that might bear on community-level suicide risk. Some communities might have a decline in economic well-being. Others might invest in crisis centers,” Kertesz told PNN by email. “However, this paper’s statistical choices require us to assume that none of the 886 regions changed in any respect that would affect suicide, other than the number of opioid prescriptions.”

Kertesz is concerned the study findings could be used to justify further cuts in opioid prescribing.

“Unfortunately the paper offers a confusing, unnecessary and internally contradictory message about the application of its findings to individual patients, one that distracts from the work of the authors and is likely to be misapplied in ways that put patient safety at risk,” he said.

The study was funded by the National Institute on Drug Abuse.

Studying suicides is difficult for researchers because many suicide deaths are misreported as accidental or of undetermined cause, making much of the data unreliable. Drug experts say up to 30% of opioid overdose deaths listed as accidental may have been intentional.

New VA Guideline: Opioids Should Not Be Used for Chronic Pain

By Pat Anson, PNN Editor

The U.S. Department of Defense (DoD) and Department of Veterans Affairs (VA) have doubled down on a guideline first released in 2017 that strongly recommends against the use of opioids for chronic pain.

In an updated clinical practice guideline, the agencies continue to recommend that opioids not be used to manage chronic non-cancer pain, especially in younger patients, and that long-acting opioids not be used to treat patients with short-term, acute pain.

The VA/DoD guideline will potentially affect millions of service members, veterans and their families. Nearly 1.5 million Americans serve in the armed forces and over 800,000 in the National Guard and Reserves. The Veterans Administration provides health services to another 6 million veterans and their families.

The updated guideline was quietly released in May 2022, but is only drawing attention now in a mostly favorable review published in the Annals of Internal Medicine.

“Compared with the 2017 recommendation against initiation of long-term opioid therapy, the updated recommendation against opioid therapy in general for chronic pain is broader and reflects the evidence that opioid therapy for any duration may be harmful,” wrote lead author James Sall, PhD, Director of VA’s Office of Evidence-Based Practice.

“Ultimately, despite finding some evidence for a small improvement in musculoskeletal and noncancer neuropathic pain, the guideline development group maintained that the potential for catastrophic harms of opioids and serious adverse events, especially with long-term use, outweighed any potential benefits of temporarily improved pain severity and functional status in patients with chronic pain.”

‘Potentially Transformative’ for U.S. Healthcare

The updated opioid guideline has 20 recommendations, nine of which are based on weak or inconclusive evidence. Unlike the recently revised CDC opioid guideline, there were no public hearings or opportunities for the public to comment or provide input. There is also no discussion of dose thresholds or morphine milligram equivalents (MME), suggesting the authors believe that any dose of opioids is potentially risky.

Three new recommendations in the new VA/DoD guideline involve opioid tapering, mental health evaluations, and the use of buprenorphine to treat pain.

The guideline urges doctors to consider using buprenorphine instead of full agonist opioids for patients needing opioids daily for chronic pain. Although the quality of the evidence for this recommendation was deemed “insufficient,” the VA/DoD believe buprenorphine as a partial agonist has less risk for overdose and misuse, and is less likely to cause euphoria.

Buprenorphine is a Schedule III opioid that is FDA approved for pain when used alone. Buprenorphine is also used to treat opioid use disorder when combined with naloxone in drugs like Suboxone. The DEA recently eliminated the “X-Waiver” program for buprenorphine, which is likely to significantly increase the number of doctors that prescribe it and the number of patients that receive it.

An editorial published in the Annals of Internal Medicine called the recommendation that buprenorphine be used for pain “potentially transformative” and "likely to expand into the greater U.S. healthcare system."

"The updated VA/DoD guideline is both conservative and radical," wrote co-authors Chinazo Cunningham, MD, and Joanna Starrels, MD, both from Albert Einstein College of Medicine. "Although the VA/DoD guideline recommends that buprenorphine be prescribed for chronic pain if daily opioids are prescribed, the recommendation itself is likely to change decision-making about whether opioids should be prescribed."

Although several recent studies have found that opioid tapering significantly raises the risk of an overdose, withdrawal or mental health crisis, the VA/DoD guideline found there is “insufficient evidence to recommend for or against any specific tapering strategies.” It only recommends that doctors and patients “collaborate” on reducing opioid doses and that tapering not be forced.

“The potential benefits of opioid tapering outweighed the potential harms of opioid withdrawal,” the guideline claims.

Before opioids are prescribed for either acute or chronic pain, the guideline recommends that the mental health of patients be evaluated for depression, anxiety, psychotic disorders and suicide. Although some patients may resent being screened for mental health problems, the guideline says “it is better for providers to know about underlying behavioral health comorbidities than to initiate long-term opioids without this clinical knowledge.”

The revised guideline reaffirms previous recommendations that benzodiazepines not be co-prescribed with opioids and that patients on long-term opioid therapy be regularly screened with urine drug tests “to decrease the risk of self-directed violence.”

Opioid prescribing to veterans, family members and those on active duty has declined significantly in recent years, as it has for the rest of the population. The revised VA/DoD guideline notes – without a hint of irony – that reduced prescribing has led to an increased use of illicit opioids by veterans and higher overdose rates.

Opioid Tapering Disrupts Healthcare and Worsens Doctor-Patient Relationships

By Pat Anson, PNN Editor

Tapering patients on long-term opioid therapy results in more emergency department visits and hospitalizations, according to a large new study that found reduced opioid use was particularly disruptive to the healthcare of pain patients with diabetes and high blood pressure.

The study by researchers at University of California Davis is the latest to document the “unintended negative consequences” of policies that limit opioid prescribing. A previous study by the same research team found that tapering raises the risk of an overdose and mental health crisis.

In their latest study, UC Davis researchers analyzed health data for over 113,000 patients who were on opioid therapy for at least 12 months, comparing those who were not tapered to those who had their dose reduced by 15% or more.

Their findings, published in JAMA Network Open, showed that tapering significantly increased hospitalizations and ED visits, while at the same time reducing the number of primary care (PC) visits. Researchers think the latter is at least partially due to “ruptures in relationships” with primary care providers (PCPs) due to patient dissatisfaction with tapering.

Opioid tapering was also associated with a significant reduction in patients taking medication for hypertension or diabetes – even though their blood pressure and blood sugar levels rose when their opioid doses were reduced.

“Tapering may be associated with reduced medication adherence due to an increased patient focus on managing pain and psychological distress due to the taper, disruption in PC due to more frequent ED visits and hospitalizations, or fracture of the PCP-patient relationship,” wrote lead author Elizabeth Magnan, MD, a family medicine physician at UC Davis Medical Center.

“Although cautious interpretation is warranted, these outcomes may represent unintended negative consequences of opioid tapering in patients who were prescribed previously stable doses.” 

Opioid prescribing has fallen dramatically in the U.S. over the past decade, particularly after the release of the CDC’s 2016 opioid guideline. Although millions of patients were affected by the guideline’s recommendations, few efforts were made at the federal level to see what happened to patients who had their opioid doses reduced or even stopped.

A recent study found the number of cancer patients seeking treatment for pain in emergency departments has doubled. Of the 35 million ED visits made by cancer patients, over half were deemed preventable – meaning the visits could have been avoided if the patient has received proper care earlier.

Stopping Rx Opioid Therapy Raises Risk of Overdose

By Pat Anson, PNN Editor

Discontinuing opioid therapy for people with chronic pain raises the risk of a patient dying from an overdose, according to a new Canadian study that calls for better guidance for healthcare providers on the risks associated with abrupt tapering.

Researchers analyzed the medical histories of over 14,000 pain patients in British Columbia who were on long term opioid therapy from 2014 to 2018 – a period when physicians in Canada and the United States were being urged to restrict opioid prescriptions due to a worsening overdose crisis. The vast majority of patients studied were either tapered to a lower dose or their opioid treatment was discontinued, regardless of whether they showed signs of opioid use disorder (OUD).  

The study findings, published in PLOS Medicine, show that discontinuing opioid therapy for pain was associated with increased overdose risk. The association was even stronger for the small minority of patients diagnosed with OUD. In total, 530 people in the study (3.8%) experienced either a fatal or non-fatal overdose, with 120 of them dying.

“Our findings underscore the need for healthcare providers and policymakers to carefully consider potential unintended adverse effects of discontinuing opioid treatment for chronic pain when developing prescribing interventions and making practice decisions,” wrote lead author Mary Clare Kennedy, PhD, a Research Scientist with the BC Centre on Substance Use and a Research Fellow at the University of British Columbia.

“Given the harms of opioid treatment discontinuation identified in this and past studies, non-consensual and abrupt discontinuation of opioid treatment for pain is contraindicated in almost all instances.”

Kennedy and her colleagues were unable to determine what substances were involved in the overdoses, but they believe some patients who had their opioid therapy stopped may have resorted to illicit fentanyl and other street drugs to manage their pain, withdrawal and other symptoms. Over 73% of the overdose deaths that occurred in British Columbia during the study period involved fentanyl.

Previous studies have also found that opioid tapering raises the risk of an overdose and mental health crisis. A study published last year in JAMA found that tapered patients were 68% more likely to be treated for opioid withdrawal, drug overdose or alcohol intoxication, and they were twice as likely to experience depression, anxiety or a suicide attempt.

The FDA warned in 2019 that rapid tapering or abrupt discontinuation of opioids could result in serious harm to patients, including withdrawal, uncontrolled pain, psychological distress and suicide.

‘Reckless Mistreatment of Patients’

Despite this growing body of evidence, forced tapering and opioid discontinuation continues – some of it caused by the heavy-handed tactics of law enforcement. Over 200 pain patients were recently cut off from opioids after their California doctor had his DEA license suspended without warning. One patient and his wife died by suicide within a week of the DEA’s action.

“Not only are we collectively causing harm, we are failing to stop causing harm even when we agree that we're causing it, which is actually worse,” says Stefan Kertesz, MD, an associate professor at the University of Alabama at Birmingham, who is leading a study of pain patient suicides.

Kertesz says regulators, insurers, journalists and law enforcement have misinterpreted overdose studies to suggest that opioid prescribing, particularly at higher doses, was the root cause of the overdose crisis.  

“Many clinicians and policymakers engaged in aggressive extrapolation that went far beyond the data. Many journalists and legal plaintiffs described the prescriptions in a way that aggravated matters. They made dose into a fetish, a performance metric, and a threshold for law enforcement,” Kertesz told PNN. “Dose based quality metrics, payor standards and legal investigation thresholds incentivize reckless mistreatment of patients.

“My ultimate question is when will agencies like the National Committee for Quality Assurance, the Office of Inspector General, and law enforcement actually come to appreciate the evidence in play?”

It took six years, but the CDC recently revised its 2016 opioid guideline to include specific language warning of the dangers of tapering or discontinuing opioids.

“Clinicians should avoid abrupt discontinuation of opioids, especially for patients receiving high dosages of opioids, should avoid dismissing patients from care, and should ensure appropriate care for patients with pain and patients with complications from opioid use,” the revised guideline states.

Opioid Tapering Raises Risk of Overdose and Mental Health Crisis

By Pat Anson, PNN Editor

Tapering patients to lower doses of opioid pain medication significantly raises the risk of opioid withdrawal, drug overdose and a mental health crisis such as depression, anxiety or suicide attempt, according to a large new study. For most patients, the risk remains elevated up to two years after their doses were reduced.

Opioid prescribing has fallen dramatically in the United States over the past decade, particularly after the release of the CDC’s controversial opioid guideline in 2016. Although millions of patients were affected, few efforts were made to study patient outcomes or what happens to those who have their opioid doses reduced or even stopped.

To address this knowledge gap, researchers at the University of California Davis School of Medicine analyzed health data for over 19,300 patients on long-term opioid therapy who had their doses reduced by at least 15 percent. In addition to medical and pharmacy claims, researchers looked at emergency room visits and hospital admissions for overdose, withdrawal or mental health crisis, both before and after tapering.

"We used an innovative observational study design to understand the patients' experience before and after opioid dose reduction. We compared outcome rates in pre- and post-taper periods with patients serving as their own controls," said co-author Daniel Tancredi, PhD, a pediatrics professor at UC Davis Health.

"While patients may struggle during the early tapering period, we reasoned that many may stabilize with longer-term follow-up and have lower rates of overdose and mental health crisis once a lower opioid dose is achieved," said lead author Joshua Fenton, MD, professor and vice chair of research at UC Davis School of Medicine.

But Fenton and his colleagues found patients continued to struggle long after their doses were cut. Their findings, published in JAMA Network Open, show a 57% increase in overdose or withdrawal incidents and a 52% increase in mental health crises 12 to 24 months after doses were lowered.

For every 100 patients during pre-tapering, there was an average of 3.5 overdose or withdrawal events and 3 mental health crises. After tapering, there were 5.4 overdose/withdrawal events and 4.4 mental health crises for every 100 patients. The risks associated with tapering were greatest in patients with the highest doses.

"Our findings suggest that, for most tapering patients, elevated risks of overdose and mental health crisis persist for up to two years after taper initiation," said Fenton. "We hope this work will inform a more cautious approach to decisions around opioid dose tapering."

An earlier study at UC Davis found that tapered patients were 68% more likely to be treated at a hospital for opioid withdrawal, overdose or alcohol intoxication, and were twice as likely to have a mental health crisis.

‘I Was Cut Off Cold Turkey’

The FDA warned in 2019 that rapid tapering or abrupt discontinuation was causing serious harm to patients. The CDC Director also pledged that year to evaluate the impact of the agency’s opioid guideline on patients and to “clarify its recommendations.”

Three years later, not a word of the CDC guideline has changed and the agency is slow walking efforts to revise it. A revised guideline draft, which cautions doctors to avoid rapid tapering or discontinuation, is not expected to be finalized until late this year. In the meantime, many doctors continue to taper patients – even those who’ve taken opioids safely and responsibly for years.

“Yesterday, I was cut off of one of my opioid medications, cold turkey. I've been given one last 30-day supply of the other, after 19 years of chronic pain treatment with opioid medication. I am bedridden,” a patient told us in a recent PNN survey on the impact of the 2016 guideline.

“Currently my pain management doctor is tapering everyone from schedule II (opioid) medications, even with years of good results and no side effects. This is dangerous when people are dealing with real pain,” said another patient.

“Before the guidelines, my pain was controlled with fentanyl patches and Vicodin for breakthrough pain. I was able to work, care for my home and family. That's all been taken away and now I spend my time either in bed or on my couch, in pain. Tapering down was 7 months of hell in my bedroom. It was cruel and unnecessary to take away medicine that allowed me to enjoy and participate in my life,” another patient wrote.

In an editorial also published in JAMA Network Open, two University of Alabama at Birmingham researchers who are studying the role of tapering in patient suicides urged doctors to be more cautious.

“Our view is that opioid dose reduction is likely to offer benefit for some, while harming others. The harms may include worsening pain, distress, or death,” wrote Stefan Kertesz, MD, and Allyson Varley, PhD. “Given this uncertain balance of harm and benefit, it would be wise for health systems to stop promoting this change to care. A policy of tapering all patients to doses lower than a specified threshold cannot be supported from available evidence.”

Kertesz and Varley are currently recruiting family and friends of patients who died by suicide to participate in a pilot study about the impact of opioid tapering on their loved ones. To participate in their study, click here to take an online survey or call 1-866-283-7223.

Revised CDC Opioid Guideline Gives Doctors More Flexibility

By Pat Anson, PNN Editor

The Centers for Disease Control and Prevention has released a long-awaited draft revision of its 2016 opioid prescribing guideline, making significant changes to recommendations so that healthcare providers have more flexibility in how they manage pain.  

Although voluntary and only intended for primary care physicians treating chronic pain, the original guideline was widely misapplied as a rigid “standard of care” by many states, insurers, providers and law enforcement, causing millions of patients to be taken off opioids or forcibly tapered to lower doses. As result, many went into withdrawal, became bedridden and disabled, committed suicide or were abandoned by their doctors. And while opioid prescribing declined, drug overdoses soared to record levels.  

“We certainly have learned and recognized the harm that has resulted when aspects of the 2016 guideline have been applied as inflexible, rigid standards that really go beyond the intent of what we wanted to occur,” said Christopher Jones, PharmD, Acting Director of the CDC’s National Center for Injury Prevention and Control. “We wanted to be very clear in this guideline that this is a clinical tool. It’s intended to support individualized patient centered care.

“There is a role for opioids in pain management and if the decision between a provider and a patient is to use them, here’s how we think that can be done in a safe manner.”

The updated draft guideline has been published in the Federal Register, where it will be available for public comment for 60 days. A final revised document is not expected until late this year.

Perhaps the most significant change to the guideline is the elimination of dose thresholds. The original guideline strongly encouraged providers not to exceed daily opioid doses of 90 morphine milligram equivalents (MME).

The revised guideline still maintains that opioids should not be used as first-line or routine therapy for pain, but takes a more nuanced and flexible approach to dosing. Providers are urged to be careful about increasing doses above 50 MME and to weigh the individual needs of each patient.

The revised guideline also has a strong warning to providers not to abruptly taper patients. And it drops a previous recommendation that limits the initial supply of opioids to a few days for acute, short-term pain. Rather than a specific number of days, the guideline recommends that opioids be provided for the “expected duration of pain severe enough to require opioids” – essentially leaving it up to providers to determine how long that may be.  

“I think we want to avoid something being seen as a rigid standard of care.  We’re quite explicit that is not the goal here,” Jones told PNN in an exclusive interview. “I think we’ve tried to frame the recommendations with more nuance than what was done in 2016, based on the latest science and feedback from the clinical community and patients that when there are hard thresholds, it is very easy for those to be misapplied and go beyond the intent of why they were there.”

‘They Listened to People in Pain’

Patients advocates who have lobbied the CDC for years to withdraw or revise the 2016 guideline were generally pleased with the updated version.

“I feel like they listened to people in pain,” says Kate Nicholson, Executive Director of the National Pain Advocacy Center and a member of the “Opioid Workgroup” that advised the CDC as the guideline was being rewritten. “It’s better than I feared. It’s trying to be more balanced. And I do feel there’s some intent to listen to people with pain and their experience, and acknowledge the guideline’s flaws. You’ve got to be grateful to them for that, that they listened. It’s a pretty big change for a federal agency.”

“The wording of the recommendations themselves is much improved over the 2016 version. In particular, the elimination of specific dosage numbers is welcomed because those were very easy for policymakers and payers to latch onto in setting policies,” said Bob Twillman, PhD, former Executive Director of the Academy of Integrative Pain Management.  

“While it's good that they are removing those, I fear that it's a bit like closing the barn door after the horse has escaped. There is a lot of work that needs to be done to modify or eliminate policies that were tied to the specific numbers in the 2016 guideline, and I'd like to see CDC play a role in that work.”  

Twillman, who was a stakeholder consulted by the CDC during the drafting of its original guideline, said he was pleased to see the agency caution against the use of “step therapy,” which requires insured patients to try non-opioid treatments first before moving on to stronger pain relievers. He believes treatments should be decided by patients and providers, not insurers.    

“I'm gratified to see that they did what I advised them (twice) to do with the 2016 guideline, in that they are calling for clinicians and patients to jointly determine the goals of care,” Twilllman said in an email. “That is absolutely vital, and it's really nice to see the emphasis on that. Developing some tools that help patients and clinicians do that seems to be a task that needs to be done.” 

The transparent rollout of the revised guideline is in marked contrast to how CDC handled the release of the original guideline in 2015, a process that was cloaked in secrecy and included little input from patients or pain management experts. The agency initially refused to disclose who they consulted with, which included several anti-opioid activists.

The CDC’s secrecy sparked distrust in the pain community, which only worsened when the agency ignored early complaints that the guideline was being misapplied. It wasn’t until 2019 the CDC admitted the guideline was harming patients and that revisions were needed.

Six years have now passed since the original guideline was released. More work remains and the CDC is hoping to get additional feedback from patients, providers and others on its revisions.

“It’s important to point out that the guideline is not final and the step that we’re at now is a real critical point in the process to wrestle with and get feedback on the issues that you’re raising,” said Jones. “And that’s why it’s important that we hear from readers of Pain News Network to get feedback, to get that experience, so as we move toward a final guideline, we can incorporate that feedback. We hope that insurers, medical community, law enforcement and others will also review the guideline and provide feedback.”

You can leaver an online comment in the Federal Register by clicking here. Comments must be received by April 11.

Does Opioid Medication Make You Euphoric?

By Carol Levy, PNN Columnist

“Dose escalation, dose reduction or discontinuation of long term opioid analgesics, have potential to harm or put patients at risk if not made in a thoughtful, deliberative, collaborative, and measured manner.

Clinicians have a responsibility to provide or arrange for coordinated management of patient's pain and opioid-related problems, and they should never abandon patients.”

That was written in a tapering guideline put out by the U.S. Department of Health & Human Services (HHS) in 2019. In some respects, it was an attempt to undo some of the damage caused by the release of the CDC opioid guideline three years earlier, which led to many patients being rapidly tapered and/or abandoned by their doctors.

Out of curiosity, I went back to the CDC guideline. A Google search took me to a 2016 New England Journal of Medicine article, co-authored by then-CDC Director Thomas Frieden, who explained the rationale for the guideline this way:

“Whereas the benefits of opioids for chronic pain remain uncertain, the risks of addiction and overdose are clear…. nearly all the products on the market… are no less addictive than heroin.”

How can patients fight against this kind of propaganda? The purpose seems clear: opioid medication and heroin are basically the same. And when chronic pain patients take them, they get addicted. Not only that, we are told, they enjoy it!

“Heroin and prescription opioid pain relievers both belong to the opioid class of drugs, and their euphoric effects are produced by their binding with mu opioid receptors in the brain,” reads information from the National Institute on Drug Abuse.

In other words, we enjoy our opioids because they make us feel “euphoric.”

I could not find any articles or research that asked people in chronic pain, “Do you feel euphoric when you take opioids? Do you enjoy the opioids you are on? Would you take them if you didn't have chronic pain?”  

No one in the online chronic pain group I administer or the others to which I belong has ever said or written, “Dilaudid makes me feel wonderful, it makes me feel high. I love it.”

But they have said or written, “Demerol makes me feel cloudy-headed and my mouth feels like cotton. But I can do more with my life now that I am on it.”

I cannot find research that asked us if our doctors have made us partners with them when tapering or ending our opioid prescriptions. Where are the papers that use us as the experts about the side effects we have when the reduction or withdrawal of opioids is forced on us?

HHS is right. It has to be a collaborative effort when doctors reduce or end opioid prescriptions. But it seems that most doctors are too afraid or unable to act as partners, instead seeing themselves as the ultimate authority.

Changes in opioid prescribing policy should have input from all of us: researchers, policy makers, doctors and patients. It should be thoughtful, deliberative and collaborative -- just as tapering should be a collaboration between our docs and ourselves.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

More Evidence That Rapid Opioid Tapering Is Harmful

By Roger Chriss, PNN Columnist

The overdose crisis has motivated a sea change in prescribing practices. Opioid tapering is seen as a part of this change. But the risks and harms of tapering often outweigh its potential benefits, especially when tapering is rapid.

The risks of rapid tapers are well known. The CDC warns providers to “avoid abrupt tapering or sudden discontinuation of opioids,” with a dose decrease of 10% per month a “reasonable starting point.”

But more rapid tapers are very common. A new study looked at retail pharmacy claims for over 810,000 patients taken off high-dose opioids in 2017 and 2018, finding that 72% were tapered more rapidly than recommended by clinical guidelines. Rapid tapering was significantly more common among Medicare patients than in commercially insured ones. Critically, the study also found that counties with high overdose rates had more rapid opioid discontinuation.

The U.S. military health system has also significantly reduced opioid prescriptions. Among active-duty members, a recent study found a 69% decline in prescriptions filled for opioids at daily doses of 50 morphine milligram equivalents (MME) or more.

The Departments of Defense and Veterans Affairs adopted guidelines in 2017 that urge military doctors to taper or discontinue opioids for patients on high doses. But a recent Washington Post investigation found that the VA’s Opioid Safety Initiative was associated with a 75% increase in suicides among veterans living in rural areas and a 30% increase in suicides for veterans in urban areas.

Further, a recent JAMA investigation found that in a study of over 113,000 patients on stable, high-dose opioid therapy, tapering was “significantly associated with increased risk of overdose and mental health crisis.”

“This study highlights important potential harms that are associated with prescription opioid tapering in people with chronic pain,” Beth Darnall, PhD, director of the Stanford Pain Relief Innovations Lab at Stanford University, told Practical Pain Management. “While work remains to understand these associations in greater detail, these findings reveal that patients with chronic pain need better protections within the healthcare system.”

There is, in other words, a clear pattern of harm here. Rapid tapers are destabilizing individual patients and are associated with increased rates of overdose and suicide. The goal of tapering was to reduce opioid-related risks and harms, but the data to date suggests the opposite is happening.

In general, the overdose crisis is getting worse fast. The latest data from the CDC shows over 96,000 drug overdose deaths in the 12 months ending in February, 2021. Opioid tapering has coincided with the rise in drug overdose deaths, though how and to what extent this happens is an open question that urgently requires attention.

There are, of course, risks to prescription opioids and patients may benefit from consensual tapering as described in a federal guideline for dosage reduction. Some people may also do better with non-opioid approaches to pain management.

But the current tapering efforts seem geared toward satisfying a statistical need to reduce prescriptions at the expense of individual welfare. As more and more public health data shows increasing harms without attendant benefits, it’s time to reconsider tapering practices and slow down deprescribing.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Opioid Tapering Raises Risk of Overdose and Mental Health Crisis

By Pat Anson, PNN Editor

Taking a patient off opioid medication or reducing their dose – a practice known as opioid tapering – significantly raises the risk of a non-fatal overdose or mental health crisis, according to a large new study.

Researchers at University of California Davis looked at medical and pharmacy claims for over 113,000 patients on long-term opioid therapy at a dose of at least 50 morphine milligram equivalents (MME) per day. About 25% of those patients were tapered.

The study findings, published in JAMA, show that tapered patients were 68% more likely to be treated at a hospital for opioid withdrawal, drug overdose or alcohol intoxication, and they were twice as likely to have a mental health crisis such as depression, anxiety or suicide attempt.

“Our study shows an increased risk of overdose and mental health crisis following dose reduction. It suggests that patients undergoing tapering need significant support to safely reduce or discontinue their opioids.” said first author Alicia Agnoli, MD, an assistant professor at UC Davis School of Medicine. “We hope that this work will inform a more cautious and compassionate approach to decisions around opioid dose tapering.”

Agnoli and her colleagues found that patients on high daily doses who were tapered rapidly were more likely to overdose or have a mental health crisis.

“I fear that most tapering patients aren’t receiving close follow-up and monitoring to make sure they’re coping well on lower doses,” said senior author Joshua Fenton, MD, professor and Vice Chair of Research in the Department of Family and Community Medicine at UC Davis.

The UC Davis study is the largest to date to examine the impact of tapering on patients. Previous studies were generally small, poor quality or limited in scope.

“The paper is well done,” says Stefan Kertesz, MD, an associate professor at the University of Alabama at Birmingham School of Medicine, who is currently leading a study of pain patient suicides. Kertesz said it’s important to remember that people on high opioid doses are usually quite sick. Any abrupt discontinuation of therapy for them is going to be risky.

“People who have been on opioids at a relatively high dose are people who have significant risk. They have significant risk of bad things happening. Whether that’s due to the opioids or not is debatable,” Kertesz told PNN. “This is a group of people who often have high medical morbidity, high disability and high psychological vulnerability. Those risks remain after opioids are stopped or maybe become even worse.”

‘My Life Has Been Ruined’  

The 2016 CDC opioid guideline led to significant increases in tapering, as many doctors, pharmacies, insurers and states adopted its recommendation to limit opioids to no more than 90 MME a day — in many cases even smaller doses.

Three years after the guideline’s release, the Food and Drug Administration warned doctors to be more cautious about tapering after receiving reports of “serious harm in patients who are… suddenly having these medicines discontinued or the dose rapidly decreased.”   

In a recent PNN survey of over 3,600 pain patients, nearly 60% said they were taken off opioids or tapered to a lower dose against their wishes. Nearly every respondent who was tapered said their pain levels and quality of life were worse.

“My life has been ruined by the involuntary opioid medicine taper I have been forced to undergo. I spend so much more time in severe pain, in bed. I no longer can participate in most activities with friends and family. I am so unhappy,” one patient told us.

“I was force tapered to 2/3 of my pain medications. I had been on the same dosage for 8 years without problems. Eight months after being tapered, I developed AFib (atrial fibrillation) and I believe it was due to stress and anxiety of under treated pain,” wrote another patient.

“My pain management doctor tapered my meds by 80% and I had no choice but to accept it.” said another patient. “I have declined so much due to CDC Guidelines that I have become completely homebound and have lost any chance I had for quality of life.”

“I was rapidly tapered without monitoring or concern for my health, pain level, mental health or ability to function,” another patient wrote. “The CDC guideline is completely responsible for increased stigma, patient abandonment, reduced access to care, increase in disability, forcing patients to the black market and to much more affordable but dangerous heroin, and sadly to suicide because the suffering is too great.”

CDC Guideline Revision

The CDC has acknowledged its 2016 guideline caused “unintended harms” and is now in the process of revising its recommendations. But the current draft revision contains the same dose thresholds as the original guideline. That’s drawn criticism from the Opioid Workgroup, an independent panel advising the CDC on the guideline update.

“Many workgroup members voiced concern about the dose thresholds written into the recommendation. Many were concerned that this recommendation would lead to forced tapers or other potentially harmful consequences,” the workgroup said in in a report last month.

In crafting its original guideline, the CDC relied on several researchers and advisors who were critical of opioid prescribing practices. One of them is Roger Chou, MD, a primary care physician who heads the Pacific Northwest Evidence-based Practice Center at Oregon Health & Science University. Chou is not only one of the co-authors of the 2016 guideline, he’s currently involved in efforts to revise it.

As PNN has reported, Chou has numerous ties to Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that publicly advocates for forced tapering. In 2019, Chou co-authored an op/ed with PROP President Dr. Jane Ballantyne and PROP board member Dr. Anna Lembke that encourages doctors to consider tapering “every patient receiving long term opioid therapy.”

Chou also belonged to a state task force in Oregon that recommended a mandatory opioid tapering policy for Medicaid patients.  

“I can’t tell you whether the tapers I do in my practice are voluntary or involuntary,” Chou told The Bend Bulletin in 2019. “I don’t think there’s anything compassionate about leaving people on drugs that could potentially harm them.”

In a 2017 tweet, PROP founder Andrew Kolodny, MD, challenged the idea that anyone was being harmed by opioid tapering.

“Outside of palliative care, dangerously high doses should be reduced even if patient refuses. Where exactly is this done in a risky way?” wrote Kolodny. “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion. Where is this happening?”

The UC Davis study appears to have answered Kolodny’s question. It’s happening everywhere.

“This study adds to a growing body of retrospective cohort studies that have identified harms associated with opioid tapering,” lead author Marc Larochelle, MD, wrote in a JAMA editorial that urged tapering policies be reconsidered.

“It is increasingly clear that opioid tapering needs to be approached with caution. In almost all cases, rapid or abrupt discontinuation should be avoided.”

Opioid Tapering Is Not the Solution to the Overdose Crisis

By Roger Chriss, PNN Columnist

The lawsuits against opioid manufacturers and distributors assume that the fault of the overdose crisis lies with manipulative marketing and medical mismanagement of patients and communities. There is some truth to this, as the HBO documentary “The Crime of the Century” describes. But there is also a lot missing.

The lawsuits and most of the media assume that the solution to the overdose crisis is to reduce opioid prescribing. But a decade of public health data has shown a more complicated picture, as prescribing levels and overdose rates have gone in opposite directions. And changes in prescribing policy were implemented in a heavy-handed way that destabilized patients and nurtured street drug markets.

Policy makers and anti-opioid activists made the overdose crisis worse, as Maia Szalavitz explains in Scientific American.

“If the goal of reducing prescribing were actually to help addicted people and improve pain care, these patients could have been contacted and given immediate access to appropriate treatment for their medical conditions when they lost their doctors. This would have left far fewer customers for dealers,” Szalavitz wrote.

“Instead, however, supply was simply cut and, in some cases, thousands of people were left to suffer withdrawal at the same time. As the crackdown progressed, even doctors who see their patients as benefitting from opioids began either to reduce doses or stop prescribing entirely for fear of being targeted by police and medical boards.”

Risks Are Not Uniform

Under-girding this policy of reduced prescribing is the assumption that risks don’t vary. In other words, it was assumed the risk of addiction and overdose is the same on the first day of opioid use as it is on the 10th or 100th day, regardless of age, gender or other factors.  

But a recent Australian study of patients on opioid medication showed that opioid use and misuse are more complex. Researchers found there was “substantial variation” in how patients answered questions from year to year about their opioid use and behavior. More patients stopped taking opioids on their own than were diagnosed with opioid dependence, suggesting that long-term opioid use does not automatically lead to misuse or addiction.

Further, the risks seem to rise quickly during the first week or two of opioid use, then drop to a stable level. That level is typically maintained over time, except in the face of changes in health status, psychosocial trauma or other medication use.

The risks seem to rise again when patients are taken off opioids. A 2019 study found that tapering actually increased the risk of a patient dying, particularly if the tapering was done quickly or non-consensually.

Irresponsible Advocacy

Anti-opioid advocacy groups like PROP (now officially called Healthcare Professionals for Responsible Opioid Prescribing), FedUp and PharmedOut are quick to point out the risks of addiction and the wrongdoings of Big Pharma.

But there is a clear failure by these groups to address the opioid hysteria they helped create or the unintended consequences of opioid deprescribing, such as sickle cell patients losing access to opioids because of what the NIH calls “rampant fear of opioid addiction and overdoses.” A similar rush to deprescribe is even impacting hospice and cancer patients.

The overdose crisis is rapidly evolving. Drug researcher Dan Ciccarone, PhD, of the University of California, San Francisco School of Medicine, told Buzzfeed that the U.S. is entering a “fourth wave” in the overdose crisis, in which illicit fentanyl and methamphetamine are the main problems, not prescription drugs.

The U.S. has both systemic and systematic issues that have impeded progress in the overdose crisis for decades. Szalavitz, Ciccarone and many others have pointed to better ways forward. From gentle transitioning of patients to harm reduction for people at risk, the U.S. could have done much better, as history now shows. Hopefully, we won’t wait again for history to tell us what we should be doing.  

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.