About three years ago, I was chatting about pain with a friend at a social function, and she told me she was taking a prescribed opioid for her chronic pain. I quickly got the uncomfortable feeling in my stomach that comes from discussing and prescribing opioids in clinical practice. I responded with my concerns, based on solid scientific evidence: “Opioids aren’t really effective for the treatment of fibromyalgia, or chronic pain in general. You are putting yourself at risk without much benefit.”
Her reply stopped me in my tracks: “But it’s the only thing that helps.”
It’s important not to understate how devastating chronic pain can be. It can make managing responsibilities at work or at home nearly impossible. By the time doctors see patients with chronic pain, many of the patients have been struggling with their maladies for months or years.
A lot of tension and emotion surrounds the treatment of chronic pain with opioids. It’s difficult for all parties. Several studies have shown that doctors experience a great deal more stress and regard their patients less favorably if opioids are discussed during visits. Likewise, in an unpublished study, our research team found that language reflecting negative emotions, such as anger and disappointment, was prominent in the medical charts of patients on chronic opioid therapy. As we work to slow the opioid epidemic, we have to acknowledge that even talking about opioids can lead to strong emotions.
Chronic Pain and Opioids
Opioids were first prescribed in a widespread fashion for the treatment of chronic pain in the 1990s, when major reevaluation of such treatment commenced. Early research suggested that they were safe and effective. Pharmaceutical companies aggressively marketed them for this purpose. As government and nongovernmental medical organizations recognized the importance of undertreated pain and set benchmarks for hospitals and clinics to treat it, the number of opioid prescriptions rose dramatically from the late 1990s through the middle of this decade.
By the time I was in medical training in 2010, prescribing opioids had become fraught with challenges. Many chronic-pain patients taking opioids reported a poorer quality of life. Meanwhile, opioid tolerance, or the need for increasing doses, was ballooning, accompanied by an epidemic of overdose and death. As a novice doctor, when I received a request to increase a dose of an opioid, I found it difficult to detect whether the request was due to undertreated pain, opioid tolerance, opioid addiction, or a combination of the three.
Tapering and Treating Pain
For chronic-pain patients, opioids can also lead to dependence and a side effect called “opioid-induced hyperalgesia”—increased sensitivity to pain due to the effect of the opioids. Starting around 2014, in response to the opioid crisis, the Centers for Disease Control and Prevention (CDC) released more-cautious recommendations for opioid prescribing. These endorsed tapering down the opioid dose for selected patients who were using chronic opioid therapy. The CDC also advised an individual evaluation for every patient, yet the guidelines caused concern among doctors and a dramatic shift in how patients on chronic opioid therapy were managed. Opioid prescribing, already down, now faced a greater, more marked decline.
Opioid tapering does decrease the risk of opioid overdose, opioid dependence, and even opioid-induced hyperalgesia. But this practice carries with it potential harm. For example, it can lead to worse general health or increased pain, especially for those tapered too quickly or by too much.
Though a large review of the scientific literature found that tapering does not generally result in worse pain, studies have shown that more research is needed to determine whether it could be harmful in other ways. Medicaid beneficiaries in Vermont who discontinued their high-dose opioids were more likely to visit the emergency room or be hospitalized because of opioid poisoning or a substance-use disorder. In a study our group conducted, we found that patients who experienced opioid tapering were four times more likely to terminate their care with a hospital system entirely.. We concluded that this could lead to worse health as patients then had to search for new doctors. More evidence is accumulating that patients with chronic pain have sometimes been left without the care they need.
Opioid Tapering and Race
There is controversy about how tapering is applied to certain patients. Our research found that black patients and female patients were more likely to be tapered than white patients and male patients, respectively.
Additionally, patients who experienced opioid tapering tended to be dissatisfied with their medical care. In a qualitative study we presented at the annual conference of the Society of General Internal Medicine, we observed that patients felt it was unfair if they were tapered despite having done nothing wrong. As they put it, they didn’t cause the opioid epidemic but they felt punished because of the actions of others.
After the CDC guidelines were published, there was a trend toward misapplication of the opioid-tapering guidelines. In 2018, Medicare came perilously close to imposing a rule that would effectively have refused to pay for long-term, high-dose opioid prescriptions. Some insurance companies toyed with hard dose limits for their patients. In response, a letter cosigned by more than 500 clinicians called on the CDC to provide clarification for its opioid-tapering recommendations in view of these misapplications. This controversy reached a breaking point earlier this year, when two of the authors of the CDC guidelines wrote an op-ed in the New England Journal of Medicine clarifying the CDC’s initial recommendations. Subsequently, both the Food and Drug Administration and the Department of Health and Human Services recommended that doctors not abruptly taper opioids.
Returning to my friend: my provocation created a temporary stir. I had science on my side, after all, but she had the debilitating pain. I stepped back and listened. The opioids helped her. I then realized my folly: while we must do our best to manage risks associated with chronic opioid therapy, having a one-size-fits-all mentality does everyone a disservice. It fails to recognize the patient as a person with needs, goals, and emotions. We do have an opioid crisis, but it’s incumbent upon us to be careful about what we do in response to it.
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Sorry doctor, but Science isn’t on your side, but more like the absence of any real testing, because, let’s face it, having a blind study with some patients receiving no pain control would be torturous.
I have 30+ years with RSD/CRPS of all limbs, and went through all the off-label alternative medications & therapies for several years before finding some relief with varying combinations of Percocet/oxycontin. And after fifteen years on those medications I detoxed myself in an effort to see if some of the lesser classes of drugs might work. They didn’t, and, almost year later, it was my pain specialist who recommended I give Nucynta a trial, the medication I’ve now used for a decade without asking for anything to supplement it. I’ve been in a wheelchair and a walker for many years of my CRPS life, and, though the medications are far from eliminating pain and related fatigue, I’ve worked my way to using canes, and tolerating hard physical therapy bi-weekly so that I depend on no one for my needs.
Even someone who is hardly a proponent of injudicious opiod prescribing, NIDA Director Nora Volkow, recognizes their are patients for whom long-term opiod therapy is beneficial. She also recognizes (NEJM March 2016) that the majority of opiod naive patients who become addicted (as opposed to physically dependent which many physicians seem to forget is an issue across many drug types) have a genetic predisposition, and also that upwards of 20-30% of so-called ODs are actually Suicides committed by under-treated chronic pain patients.
I would add that opiod-induced hyperalgesia has only been proven in studies with rats, and that if there was a direct correlation between drug effects on rodents and humans the number of available medications would be exponentially higher; and the few short-term studies assessing the worth of opiods for various pain conditions not only fall short in terms of the variability with which any medication works among different individuals (sometimes a result of genetics), but usually involves the ridiculous comparison of the lowest dose of Percocet with the highest, just short of liver-endangering, Extra Strength Tylenol. And, like the Iranian study our Surgeon General had to back away from, when the Tylenol fails to work the backup plan is, ironically, the Percocet.
I’m not advocating opiods first for every pain syndrome/type forever. What I’m against is this foolish one-size fits all treatment algorithm for pain patients that a key punch operator could follow as easily as a supposedly trained physician. I’m also against the ridiculous ‘heroin pills’ hype by the doctors at PROP who have made one hell of a living off the addiction industry & their expert testimony that goes beyond their expertise. (Examples: BMJ Jan 2018: of 500,000+ surgical patients from 2006-2013 who were given opiods post-op, PT6% showed any signs of misuse, not necessarily addiction, on follow-up. Erin Krebs/S.P.A.C.E. study for the V.A.: don’t know that osteo-arthritis of the knee is what I would consider opiods used for, and forgetting the Percocet/Extra Strength Tylenol type of comparison explored: of the 238 long-term opiod patients in the study, all pre-screened, and checked by PDMP and random urinalysis, NOT ONE OF THEM SHOWED ANY SIGN OF MISUSE at the study’s one year end.
Science Magazine had a study from the Univ of Pittsburgh in its Sept 2018 issue that more accurately stated that we are not in the midst of any prescription opiod epidemic, but rather a “38 year escalating ‘Drug Epidemic” of which prescription opiods were a cheap easily obtained alternative for a short time. SAMHSA stats show 80% of misused prescription opiods were Diverted medication NEVER PRESCRIBED for the abuser. Toss in ‘semi-legitimate’ scripte written at pill mills and the percentage of legit responsible pain patients who entered any of the media-hyped statistics goes way down. Where it could be whittled further would be by doctors who might assess mental health issues, prior substance abuse, or bad home life, but, unfortunately, not every patient is seen by a family doctor who can take the time to nurture a relationship and know their patient. But this constant harping on, for lack of a better term, legacy patients with real pain conditions who have improved pain relief and demonstrable functionality is harmful, deflating and wrong.
Dr. Perez saw your response and wanted to share his response with you. It follows here:
“I appreciate you sharing your story Lawrence. There is much I agree with you about. I just want to begin by clarifying something. Any decision to continue or taper opioids should be one that is individualized. It should take into account functional gains, and compare them to ongoing, anticipated risks.
Your last sentence says that “this constant harping on…legacy patients with real pain conditions who have improved pain relief and demonstrable functionality is harmful, deflating, and wrong.” I agree. The purpose of this piece was to acknowledge that, as you said, there should not be a one-size-fits-all mentality about opioids. We have to do better.