Gabapentinoids Raise Risk of Suicide and Overdose in Younger People

By Pat Anson, PNN Editor

Gabapentinoids – a class of nerve medication widely prescribed to treat chronic pain – increase the risk of suicide, overdose, traffic accidents and head or body injuries in younger people, according to a large new study published in The British Medical Journal.

Sales of the two main gabapentinoids, pregabalin (Lyrica) and gabapentin (Neurontin), have tripled in recent years in the United States, where they are often promoted in prescribing guidelines as safer alternatives to opioids.

A team of researchers followed nearly 192,000 people enrolled in the Swedish Prescribed Drug Register who filled prescriptions for gabapentinoids on at least two consecutive occasions from 2006 to 2013. That information was compared to data in the Swedish Patient Register, which collects information on hospital admissions and outpatient care, as well as the Swedish Cause of Death Register.

Over the study period, researchers found that patients taking gabapentinoids had higher rates of suicide or suicidal behavior (5.2%), unintentional overdose (8.9%), traffic accidents (6.3%) and head or body injuries (36.7%) than the general population.

The risks were strongest for people who were prescribed pregabalin and were most pronounced among adolescents and young adults aged 15 to 24.  Patients aged 55 and older taking gabapentinoids were not at greater risk.

Researchers believe the drugs may have more impact on younger people because they have faster metabolisms, which could lead to withdrawal problems that affect their impulsivity and emotions.

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“Overall, gabapentinoids seem to be safe for a range of outcomes in older people. However, the increased risks found in adolescents and young adults prescribed gabapentinoids, particularly for suicidal behaviour and unintentional overdoses, warrant further research,” said lead author Seena Fazel, MD, of the University of Oxford in England.

“If our findings are triangulated with other forms of evidence, clinical guidelines may need review regarding prescriptions for young people, and those with substance use disorders. Further restrictions for off-label prescription may need consideration.”

Pregabalin is approved by the FDA to treat diabetic nerve pain, fibromyalgia, post-herpetic neuralgia caused by shingles and spinal cord injuries; while gabapentin is approved for epilepsy and post-herpetic neuralgia. Both drugs are also widely prescribed off-label to treat back pain, depression, migraine and other chronic conditions.

Gabapentinoids are increasingly being used recreationally by addicts who have found the medications enhance the effects of heroin and other opioids. The drugs were recently classified as controlled substances in the UK.

Gabapentin is not currently scheduled as a controlled substance by the DEA, while Lyrica is classified as a Schedule V controlled substance, meaning it has low potential for addiction and abuse.  

A recent clinical review found little evidence the drugs should be used off-label to treat pain and that prescribing guidelines often exaggerate their effectiveness. The CDC’s controversial opioid guideline, for example, calls gabapentin and pregabalin “first-line drugs” for neuropathic pain.

“Despite documentation that these drugs were promoted improperly for off-label treatment of pain, the recent rapid increase in prescribing of gabapentinoids suggests a persisting sense among clinicians that gabapentinoids are highly effective pain medications,” wrote Christopher Goodman, MD, and Allan Brett, MD, of the University of South Carolina School of Medicine.

“Guidelines and review articles have contributed to this perception by often uncritical extrapolation from FDA-approved indications to off-label use.”

Honoring Our Veterans on Memorial Day

By Dr. Lynn Webster, PNN Columnist

On Memorial Day, we honor those who lost their lives while serving in the United States military. It is a time when we should also acknowledge the sacrifices all veterans have made, and continue to make, for our country.

Physical and mental trauma are some of the most devastating consequences veterans suffer as a result of their sacrifices. Opioid drug use in military populations is nearly triple that of civilian populations.

A 2014 JAMA study reported that more than 44 percent of active-duty U.S. infantry soldiers suffered from chronic pain. Other reports state that combat injuries cause most of the chronic pain.  

That doesn't surprise me. I've received many emails from veterans who describe their struggles to find treatment for the pain they acquired during their military service.

Here are three typical stories from veterans:

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A Persian Gulf veteran, John, is being forced to slowly taper from a combination of opioids that he claims worked for him. His dose of medication is being tapered because his physician feels pressured to comply with recommendations of the CDC Opioid Prescribing Guideline.  

John is afraid that the new limit will be inadequate to treat his pain.  

"I am VERY upset with my government, as their draconian 'solutions' to the perceived 'drug problem' will only exacerbate pain issues with legitimate chronic pain patients. I don't think their efforts will have ANY effect on the illegal drug problems that plague the U.S.," John wrote me.  

He may be more fortunate than others. At the time John contacted me, he had a pain specialist who was still able and willing to support his need for treatment. 

Others have not been as lucky. Mark is a 100% disabled veteran with post-traumatic stress disorder (PTSD), severe lower back pain and severe knee problems. After surgery, Mark was only able to get a two week supply of pain medicine. For two and a half months, he suffered without any medication until he was able to go outside the VA system to obtain oxycodone.  

Then there is Jason. He is a young American hero who used opioids to self-medicate his PTSD and chronic pain. His story may help people understand why there are approximately 20 suicides each day by America's veterans.  

Although firearms are a common method of suicide with veterans, the use of prescription medication has also been implicated. Having access to opioids gives veterans a less violent way to end their lives. 

Unfortunately, the number of veteran suicides may even be underreported. As many as 45 percent of drug overdoses -- including those of military members -- might be related to suicide, according to a former past president of the American Psychiatric Association. 

Veterans' suicides make up 18% of all suicides in the U.S. The suicide rate among members of the military is nearly 3 times that of civilians.  In 2012, for the first time in a generation, the number of active duty soldiers who killed themselves exceeded the number of soldiers who were killed in battles.

Approximately 20% of recent war veterans suffer from PTSD, in addition to chronic pain. PTSD was the most common mental health condition for almost 1 million soldiers who served between 2001 and 2014. Nearly one in four of those who served during those years developed PTSD within a year of coming back home. 

Much of the general public and many mental health professionals have doubted that PTSD was a true disorder until recently. Even now, soldiers with symptoms of PTSD face rejection by their military peers and are often feared by society as potentially dangerous. Movies ranging from "American Sniper" to "Thank You for Your Service" frequently depict characters with PTSD struggling to fit into society.  

In real life, those with PTSD symptoms are often labeled as “weak” and removed from combat zones, and sometimes they are involuntarily discharged from military service. 

These disturbing trends are difficult to read anytime, but they seem especially troubling as we commemorate Memorial Day. This is the time for us to acknowledge that those who have served our country deserve the best medical care available.  

Five years ago, retired Gens. Wayne Jonas, MD, and Eric Schoomaker, MD, wrote a commentary in JAMA titled “Pain and Opioids in the Military: We Must Do Better.” Recognizing that veterans often misuse opioids to self-medicate mental health disorders, they proposed teaching members of the military a greater degree of self-management skills such as problem-solving and goal setting.   

Of course, self-management would be preferable to using opioids if it were sufficient to afford veterans a quality of life they deserve. However, teaching self-management skills is often insufficient. That is clear in the cases of John, Mark and Jason. 

On Memorial Day, I hope we can take a moment to think about the men and women who have fought -- and sometimes died -- for a country they believed in.  

I also hope we honor the living by showing them that they deserve treatment for their chronic pain, PTSD, addiction and any other health care issues they may have. We owe it to them. 

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and is author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Forced Opioid Tapering: ‘The Next Great Experiment’

By Pat Anson, PNN Editor

Last month the Food and Drug Administration warned doctors not to abruptly discontinue or rapidly taper patients on opioid pain medication. The agency said it had received reports of “serious harm” to patients who’ve been suddenly cutoff, including withdrawal symptoms, uncontrolled pain, psychological distress and suicide.  

A new study published in the Journal of Substance Abuse Treatment shows just how common the practice is. And how millions of pain patients are being subjected to a public health experiment with hardly anyone keeping track of what happens to them.

“The United States went through a great ‘experiment’ of expanding treatment of pain with opioids which has proved to be disastrous for public health. We have entered the next great ‘experiment’ of discontinuing opioid medications among the millions of Americans who are currently taking them,” said lead author Tami Mark, PhD, senior director of behavioral health at RTI International, a non-profit research institute.

“Little is known about how many individuals are tapering off opioid medications, whether observed tapering follows any… guidelines, and the extent to which rapid tapering is associated with negative consequences.”

Mark and her colleagues looked at medical and pharmacy claims for nearly 500 Medicaid patients in Vermont who had high doses of opioid medication discontinued from 2013 to 2017.

All of the patients were prescribed a daily dose of at least 120 MME (morphine milligram equivalent) and over half had been on that high dose for over a year. 

Although most clinical guidelines recommend a “go slow” approach to opioid tapering – especially for patients on high doses – only 5 percent of the Vermont patients had a tapering period longer than 90 days. The vast majority (86%) were rapidly tapered in 21 days or less, including about half who were cut off from opioids without any tapering.

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The Centers for Disease Control and Prevention recommends that patients on opioids be tapered only 10% a week, with even slower tapers of 10% a month for long-term users. Had those guidelines been applied in Vermont, most tapers would have taken up to a year to complete.

Half of Tapered Patients Hospitalized

What happened to the patients who were cut off? Nearly half were hospitalized or had an emergency room visit for an “opioid-related adverse event” -- a medical code that can mean anything from severe withdrawal symptoms to acute respiratory failure. For tapered patients, the risk of being hospitalized was reduced by 7% for each additional week of tapering.

Researchers don’t know how many of the discontinued patients committed suicide or how many were referred to addiction treatment. Notably, less than one percent received medication assistance treatment (MAT) such as Suboxone.

The study did not look at why patients were taken off opioids or who initiated the discontinuation. But researchers believe some of the rapid discontinuations “may be due to a breakdown in the clinical relationship between physicians and patients” – suggesting the patients were forcibly tapered or abandoned by their doctors.

In its warning to doctors, the FDA strongly recommends that patients not be forcibly tapered and that patients and doctors should jointly agree to a tapering plan.

“Health care professionals should not abruptly discontinue opioids in a patient who is physically dependent. When you and your patient have agreed to taper the dose of opioid analgesic, consider a variety of factors, including the dose of the drug, the duration of treatment, the type of pain being treated, and the physical and psychological attributes of the patient. No standard opioid tapering schedule exists that is suitable for all patients,” the FDA said.

Forced Tapering Widespread

How many patients have been forcibly tapered or discontinued is unclear, but it probably runs in the millions. A recent report from IQVIA found that there were 75 million fewer opioid prescriptions filled last year compared to 2014, with the biggest decline in high dose prescriptions. 

In PNN’s recent survey of nearly 6,000 pain patients, over 80 percent said they had been taken off opioids or had their dose reduced since the CDC released its controversial opioid guideline in 2016. Many were turning to other substances – both legal and illegal – for pain relief. And nearly half said they had considered suicide because their pain is poorly treated.

“I have been forced to taper to 90 MME. I had been stable and functional for 10 years at 135 MME. Now I can no longer work, and can barely take care of my children. I am considering suicide because my pain is unbearable,” one patient told us.

“I have been forcibly tapered by more than half and my pain is not being relieved at this dose. I am now unable to work or care for my children,” another patient wrote. “I live in constant anxiety (which worsens my pain) that I will be abandoned, refused any pain management, or reduced to a dose so low that taking my own life is the only way to escape the pain.”

“My forced taper was a little over a year ago. Before that I lived a small but functional life on high dose opioids. I took the same dose, from the same doctor for over a decade. Then I was forced off of 75% of my dose,” said another patient. “Once we got down to my current dose the medication was no longer enough to control my pain. I now live a tiny, nonfunctional life. I spend all my time in bed watching TV. I never leave the house. Showers are my worst enemy. And I am lucky. I wasn’t abandoned by my doctor.”

A noted critic of opioid prescribing calls reports like these exaggerations. Andrew Kolodny, MD, the Executive Director and founder of Physicians for Responsible Opioid Prescribing (PROP), told Stateline that the number of doctors who are inappropriately tapering patients is likely very small and should not be blamed on the CDC.

"We have a very real problem in this country. But the CDC guidelines didn't cause it," Kolodny said. "The problem is that millions of Americans have been put on round-the-clock opioids at very high doses and for reasons that doctors now realize were not appropriate.

"What the FDA needs to tell doctors is that because it is so excruciating to come off of opioids, they need to be very selective about who they put on them.”

In a series of Tweets two years ago, Kolodny said patients on high doses should be forcibly tapered “even if patient refuses” and challenged assertions that forced tapering was risky and widespread.

Now Kolodny says he sympathizes with patients but claims they are being manipulated.

“Their emotions are real. But they’re being effectively manipulated to controversialize the CDC guidelines,” he told Stateline.

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Many of Kolodny’s colleagues disagree. Over 300 healthcare professionals warned in a joint letter last year that forced opioid tapering has led to “an alarming increase in reports of patient suffering and suicides” and called for an urgent review of tapering policies at every level of healthcare.

“This is a large-scale humanitarian issue,” the letter warns. “New and grave risks now exist because of forced opioid tapering.” 

Social Support Key to Recovery from Suicidal Thoughts

By Pat Anson, PNN Editor

Hardly a day goes by that I don’t get an email or a comment left on this website about suicide.

Recently a young military veteran named “Joe” reached out. Joe is depressed and unable to work because he has chronic back and leg pain

“The thing is, I’m just about to turn 28 and can’t fathom how I’m supposed to go on like this for another year or two let alone trying to live my life for the next 60-70 years,” Joe wrote. “I’m not going to do anything yet but I have been seriously looking into euthanasia. I haven’t been able to have a real conversation with anybody about it, not even one of my 5 therapists or my wife, because I already know their reactions.”

Joe said he felt very rational about his decision but was anxious to talk about it “without being thrown into a straightjacket.”

Joe’s instinctive urge to talk with someone could be the key to working through this difficult time in his life, according to a new study by researchers at the University of Toronto. They analyzed a survey of 635 Canadians with chronic pain who had seriously thought about suicide to find out what qualities made those thoughts go away. Suicide “ideation” disappeared in about two-thirds of them.

Having a social support network – someone to talk to – was the key.

“The biggest factor in recovery from suicidal thoughts was having a confidant, defined as having at least one close relationship that provide the person in chronic pain a sense of emotional security and well-being,” said lead author Esme Fuller-Thomson, PhD, a Professor of Social Work, Medicine and Nursing and Director of the Institute for Life Course & Aging.

“Even when a wide range of other characteristics such as age, gender and mental health history were taken into account, those with a confidant had 87 percent higher odds of being in remission from suicidal thoughts compared to those with no close relationships."

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People with pain who stopped having suicidal thoughts were also significantly more likely to be older, female, white, better educated, and more likely to use prayer and spirituality to cope with daily problems.

Living in poverty and struggling to pay basic living expenses were barriers to recovery from suicide ideation. Poverty can severely limit access to healthcare, transportation and social activity.

"Clearly we need targeted efforts to decrease social isolation and loneliness among those experiencing chronic pain. These participants reported that pain prevented some or most of their activities, so they were particularly vulnerable to social isolation,” said Fuller-Thomson. “More awareness by the general public that mobility limitations associated with chronic pain can make it difficult for individuals to socialize outside the household, could encourage friends and family to visit and phone more and thereby decrease loneliness."

PNN’s recent survey of over 6,000 patients and healthcare providers shows how pervasive suicide is in the pain community. Nearly half the patients said they have considered suicide, while nearly one in four practitioners said they have lost a patient to suicide.

The good news is that public health agencies are finally starting to pay attention to these issues. Last week the U.S. Food and Drug Administration warned doctors not to abruptly discontinue or rapidly taper patients on opioid pain medication because of the risk of suicide.

“(FDA) has received reports of serious harm in patients who are physically dependent on opioid pain medicines suddenly having these medicines discontinued or the dose rapidly decreased. These include serious withdrawal symptoms, uncontrolled pain, psychological distress, and suicide,” the agency said.

If you or a loved one are having suicidal thoughts, support is just a phone call away. The Suicide Prevention Lifeline has trained counselors on duty 24/7 at 1-800-273-TALK.

FDA Warns About Fast Opioid Tapers

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration issued an unusual warning Tuesday cautioning doctors not to abruptly discontinue or rapidly taper patients on opioid pain medication.

The agency said in a statement it had received reports of “serious harm in patients who are physically dependent on opioid pain medicines suddenly having these medicines discontinued or the dose rapidly decreased.” The harm includes withdrawal symptoms, uncontrolled pain, psychological distress and suicide.

The FDA gave no details on cases of patient harm but said it was tracking them and would require changes on opioid warning labels to help instruct physicians on how to safely decrease opioid doses.

“Rapid discontinuation can result in uncontrolled pain or withdrawal symptoms. In turn, these symptoms can lead patients to seek other sources of opioid pain medicines, which may be confused with drug-seeking for abuse. Patients may attempt to treat their pain or withdrawal symptoms with illicit opioids, such as heroin, and other substances,” the FDA said.

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In recent years, there have been an increasing number of anecdotal reports of pain patients committing suicide or turning to illegal drugs for pain relief. It is not clear why the FDA decided to act now, just days after the departure of former FDA commissioner Scott Gottlieb, MD.

In PNN’s recent survey of nearly 6,000 patients, over 80 percent said they had been taken off opioids or had their dose reduced. Nearly half said they had considered suicide because their pain is poorly treated and many were turning to other substances – both legal and illegal – for pain relief.

  • 11% obtained opioid medication from family, friends or black market

  • 26% used medical marijuana for pain relief

  • 20% used alcohol for pain relief

  • 20% used kratom for pain relief

  • 4% used illegal drugs (heroin, illicit fentanyl, etc.) for pain relief    

Last December, over a hundred healthcare professionals warned in a joint letter to the Department of Health and Human Services that forced opioid tapering has led to “an alarming increase in reports of patient suffering and suicides” and called for an urgent review of tapering policies at every level of healthcare.

“This is a large-scale humanitarian issue,” the letter warns. “New and grave risks now exist because of forced opioid tapering.” 

Federal agencies widely differ on opioid tapering recommendations. The Centers for Disease Control and Prevention recommend a "go slow" approach, with a "reasonable starting point" being 10% of the original dose per week. Patients who have been on opioids for a long time should have even slower tapers of 10% a month, according to the CDC.

The Department of Veterans Affairs recommends a taper of 5% to 20% every four weeks, although in some cases the VA suggests an initial rapid taper of 20% to 50% a day “if needed.”

In its warning, the FDA cautioned doctors that no standard opioid tapering schedule exists that is suitable for all patients.

When you and your patient have agreed to taper the dose of opioid analgesic, consider a variety of factors, including the dose of the drug, the duration of treatment, the type of pain being treated, and the physical and psychological attributes of the patient,” the FDA said. “Create a patient-specific plan to gradually taper the dose of the opioid and ensure ongoing monitoring and support, as needed, to avoid serious withdrawal symptoms, worsening of the patient’s pain, or psychological distress.”

The FDA urged patients and doctors to report side effects from opioid discontinuation and rapid tapers at druginfo@fda.hhs.gov or to call 855-543-DRUG (3784) and press 4.

What Pain Patients Say About CDC Opioid Guideline

By Pat Anson, PNN Editor

Are there better and safer alternatives than opioids for chronic pain?

That’s one of the questions posed in PNN’s latest survey on the CDC’s opioid prescribing guideline. The guideline states that “no evidence shows a long-term benefit of opioids” and recommends physical therapy, cognitive behavioral therapy, massage and a number of non-opioid medications as safer and more effective treatments.

People in pain disagree. Nearly 7 out of 10 patients tell us there are no better or safer treatments for chronic pain than opioids.

But the numbers tell only part of the story. Most of the 5,885 patients who responded to our survey left detailed comments on how the CDC guideline has affected them.  

Many have lost access to opioid medications after using them responsibly for years. They feel abandoned by the healthcare system.

Some are bedridden due to physical pain, but also live with the emotional suffering that comes from losing jobs, financial security, marriages and friends.

Many are suicidal. And a few have turned to street drugs.

ARE THERE BETTER AND SAFER ALTERNATIVES THAN OPIOIDS FOR CHRONIC PAIN?

We thought the comments below were important for you to see. They are representative of the thousands that we received. The comments are edited for clarity and to protect the patients’ identities.  

‘I Have Lost So Much’

“I am now only able to use Tylenol for my multiple, severe chronic pain conditions. In two years, I have had to quit working, I am homebound, mostly bedridden. I am severely depressed, think about suicide daily as my only remaining option for pain management. I have severe insomnia due to the pain. I have developed severe hypertension and cardiac arrhythmia due to the constant severe pain and twice have suffered sudden cardiac arrest. The cardiologist said there is no underlying cardiac conditions, it is due to long term, unmanaged, severe pain.”

“I have been diagnosed with over 30 different conditions and a rare muscular disease. I spent thousands on doctors and natural treatments. Now, I have to suffer until I die. I have missed out on so much and lost so much. In bankruptcy, lost my business, could not go to Thanksgiving or Christmas, but the worst was I could not go to my daughter’s wedding. My life has become PAIN and my bed. As Americans we are supposed to have freedom. The right to choose what’s best for our pain. Each individual is different. The government should not choose what medication we should not take or how much.”

“You have no idea what it feels like to hurt, every single day. To be accused of being a drug addict for needing opioids. I have tried physical therapy. I have tried essential oils and Epsom salt baths. I have tried acupuncture and going to a chiropractor. I have tried every single alternative, but nothing helps the debilitating bone pain. I think of suicide, often. The opioids don't even get us high, it barely helps with the pain. At least with them, we can lead somewhat of a life. Right now I can barely work, let alone live. Your guidelines help no one but yourselves. People will always find a way to abuse something. But you guidelines are not hurting them. They are hurting us. You, are hurting us.”

“People with chronic/intractable pain just want to have some form of quality life. We want to live our lives. We want to be able to work, run errands like grocery shopping, clean our homes, cook food and take care of our families. I don't mention a social life as that is even difficult with good pain management. These guidelines are stripping people of their dignity, self worth and will to live, not to forget the shame and humiliation for needing narcotic pain medication in order to live.”

‘American Genocide’

"I am ashamed that my chosen career in Public Health has actively created a campaign based on false data.  The fact that the ‘prescription’ drug epidemic was based on both the legal and illegal drug statistics was openly stated at every public health presentation I attended. That more accurate breakdowns have now been published has not altered the campaign, since grant monies have been awarded to organizations based on the inaccurate info, and those organizations must follow-through with the original requirements to get their money. Although they knew that data on suicides and the impact on pain patient quality of life would need to be measured, information systems to gather this information were not put into place.” 

“A prescription opioid was the only medication that worked for me. I went through every non-narcotic drug before my doctor would even prescribe opioids. These guidelines have made doctors scared to write pain med prescriptions.  Never in my life did I think I would live in a country that has legalized the torture of millions of American citizens by withholding necessary pain medication. This is beginning to look like the start of an American genocide of chronic pain/ill people.”

“I believe everyone has a right to be pain free. Every person has a different pain tolerance and to deny them medication for their pain should be absolutely illegal. People who are denied pain medication WILL find another way to handle their pain, and WILL be more likely to overdose and possibly die. Denying prescription pain medication will not stop people from finding it somewhere else, it will only increase their desperation to find another way to get it.”  

I'm scared. I am a senior citizen. I cannot afford to go on like this. I am now afraid to see a physician because I am using Heroin for pain. I do not have a addictive personality. It is the only substance I use and only enough to barely function. I am frightened. I am ashamed. The one thing the CDC was attempting to halt has sent numerous pain patients down the road of underpasses and scary encounters to try and keep functioning as we used to before we were treated like addicts.”

“I have lost good friends because of the CDC guidelines. I have had 4 friends commit suicide because they could not deal with their day to day pain levels. I had a friend who broke his ankle bad enough that the bone was sticking out and he had to have surgery and they told him to take Advil and Tylenol afterwards. This is starting to be barbaric and inhumane.” 

‘Living on Borrowed Time’

“I have been fortunate. My doctor continues to treat me, prescribe my meds, and help when there is a problem getting prescriptions filled. However, many of my friends have had problems ranging from doctors discharging them to pharmacists refusing to fill their prescriptions and more. One of my friends committed suicide when her pain meds were taken from her and she could no longer live with her pain. I feel so fortunate that I'm not having these problems, but then I wonder if I'm living on borrowed time.” 

“My spine specialist informed me one year ago he would no longer be doing pain management due to the DEA. I have not been able to find another pain doctor.  I am 55 years old. I spend 75% of my days in bed suffering. Even taking a shower puts me in tears. My house is a mess. I only go to the grocery store and my primary care provider when I have to. I have had multiple injections in my back, have tried every OTC med but nothing helps. When I was on opioids I passed my urine screens, my medication was never off count. I took them as prescribed. WHY AM I BEING NEGLECTED? DON'T I HAVE THE RIGHT TO BE TREATED FOR MY PAIN?”

“I have chronic pain due to multiple spine surgeries and fibromyalgia. I am on Medicaid and unable to work. I was on the same dose of opioids through a pain management physician for over 10 years with no issues whatsoever. I was able to work, raise my children (single mom) and have a life. I now have been cut back so far that I have to choose whether or not I want a good night’s sleep. The CDC guidelines have completely left the chronic pain community out to dry.”

‘Doctors Have a Responsibility’

“Please please please tell doctors they have a responsibility to provide pain medication to patients whose lives are being destroyed by chronic pain. I've lost everything because I got hurt at work. I used to run marathons and triathlons. Now my my blood pressure has skyrocketed, I gained 30 pounds, I lost my independence, I have no social life, I lost my sex life, and as a result of all these things I finally lost my wife of ten years. The guidelines needs to emphasize the need for people like me to have access to pain meds because so far, every doctor I have come into contact with since my injury has ignored that part of the guidelines. If you want to see a doctor's eyes glaze over and watch them stop listening to you, just mention pain medication.”

“My doctor was placed under investigation by the DEA for overprescribing. His practice was for high risk pain patients (many receiving end of life care), so he was red-flagged for a high volume of opioid Rx’s. As a result multiple chain pharmacies refuse to fill his scripts, Medicare & Medicaid patients were dropped with only 30 days notice, and he had to start tapering all other patients no matter our diagnosis. My insurance has refused to reimburse my prescriptions and half my disability check now goes to pay for them. I have no quality of life, it hurts to do everything, even basic self-care. I was openly mocked by doctor at a recent visit to the emergency room when I said I had a pain level of 7. He told me I wouldn’t get my fix from him. I had fractured my back in a rollover car accident.”

“Four years ago I was diagnosed with a B cell Lymphoma cancer. At that time my cancer doc prescribed pain meds for the broken vertebrae the cancer caused and the pain that the chemo caused. I came out of remission recently and started another round of treatment. My cancer doctor will no longer prescribe pain meds for me because I now see a pain doctor. The pain doctor doesn't understand the new cancer drug I'm on and that the side effects of this drug are pain, so he is very reluctant to manage my cancer pain. Many days I wonder if it would just be better to let the cancer take its course than to be scrutinized and treated like a criminal.”

“I am 88 years old and the dosage of medication I was given before these guidelines went into effect gave me a decent quality of life and I was able to endure the severe chronic pain I have had for years. I am now in a nursing home with a 38-year-old doctor who refuses to treat my pain. I feel helpless and fear I am going to remain in this nursing home much longer than I would like. I am also angry, in pain and have become depressed due to my situation. I have thought of suicide, often. I recall our lawmakers and others stating they did not want to do anything to keep the elderly from suffering due to these changes. I am here to tell you that they missed that goal by a long shot. As an elderly man, I should have the right to take what I need to live out my last bit of time on this earth as comfortable as possible. These guidelines have made that impossible.”

For a breakdown of some of the key findings from our survey, click here.  To see what doctors and other healthcare providers are saying about the guideline, click here.

Survey: CDC Guideline Having ‘Horrendous’ Impact on Pain Patients

By Pat Anson, PNN Editor

The CDC opioid prescribing guideline has harmed pain patients, significantly reduced their access to pain care, and forced many patients to turn to alcohol and other drugs for pain relief, according to a large new survey of over 6,000 patients and healthcare providers by Pain News Network. 

Today marks the third anniversary of the CDC guideline, which discourages the prescribing of opioid medication for chronic pain. Although voluntary and only intended for primary care physicians, the guideline has been implemented as mandatory policy by many states, insurers, pharmacies and throughout the U.S. healthcare system. The survey found many unintended consequences for both patients and providers.

Over 85 percent of patients say the guideline has made their pain and quality of life worse. And nearly half say they have considered suicide because their pain is poorly treated.

“The guidelines are affecting legitimate patients in a horrendous way while the actual addicts are just turning to street drugs,” said one pain sufferer.  “My quality of life has been so drastically reduced I attempted to take my life last year. Fortunately, I was found before I could bleed out but every single day has been an absolute struggle.”

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Over two-thirds of healthcare providers are worried about being sanctioned or prosecuted for prescribing opioids. Rather than risk going to prison, many have stopped treating pain, closed their practice or retired.

“Many of those doctors are scared to do their job, leaving patients in unnecessary pain, both acute and chronic. Tapering patients on chronic stable doses of opioids because some people abuse opioids is not just unjustified, it’s cruel and harmful,” a doctor wrote.

The PNN survey was conducted online and through social media from February 17 to March 15.  A total of 5,856 patients and 157 doctors and other healthcare providers in the U.S. participated.

Asked if the guideline is helpful or harmful, 96 percent of respondents said it has harmed pain patients — a startling verdict for an agency with a mission statement that says “CDC saves live and protects people from health threats.”

“Cannot understand or know why the CDC will not speak out on the harm done to undertreated, denied and abandoned patients,” one patient said.

“It was a criminal act. The outcome was foreseen, the guidelines were written in secret, and the carnage that we predicted has come to pass,” said an emergency medicine physician.

“They should be revoked. People are suffering and committing suicide due to inability to tolerate suffering. This is inhumane,” another provider wrote. “It blemishes CDC’s reputation.”

HAS CDC GUIDELINE BEEN HELPFUL OR HARMFUL TO PAIN PATIENTS?

Opioid Prescriptions Declining

Opioid prescriptions in the U.S. have been declining for several years and now stand at their lowest level since 2003. The drop in prescriptions appears to have accelerated since the CDC guideline was released in 2016.

Eight out of ten patients said they are being prescribed a lower dose or that their opioid prescriptions were stopped. Many indicated they were forcibly tapered off opioids without an effective alternative.

“I had my pain under control until my doctor told me he was cutting my pain meds by half,” a patient said. “He lied to me, he cut them by 85% and now I am home ridden! The CDC guidelines are a disaster to the chronic/intractable pain patients.”

“I have lost all quality of life and many days I no longer want to live with this pain,” another patient wrote. “I've never abused my meds, yet I'm being treated like a drug addict.”

“VA doctors are afraid to prescribe any opioids or narcotics, because of mandatory education courses given to all VA doctors,” a nurse with the Veterans Administration said. “The veterans are not being treated for chronic pain. Suicides have increased!”

“Our doctors should not have to choose between treating their patients in a safe meaningful way or feeling like they could lose their licenses to practice,” another patient said.

HOW HAS CDC GUIDELINE AFFECTED YOUR OPIOID PRESCRIPTIONS?

Patient Abandonment

It’s not just opioids that patients are losing access to. Nearly 9 out 10 pain patients report problems finding a doctor that’s willing to treat them. Many say they’ve been discharged or abandoned by a doctor or had problems with a pharmacy or insurer. Only a small percentage of patients have been referred to addiction treatment.

  • 73% of patients say it is harder to find a doctor

  • 15% unable to find a doctor

  • 34% abandoned or discharged by a doctor

  • 27% insurer refused to pay for a pain treatment

  • 27% pharmacy refused to fill an opioid prescription

  • 5% given a referral for addiction treatment

“As an RN in pain management I have seen decreased quality of life, increased pain and anxiety for patients. Providers fear for their license and livelihood. My staff spends HOURS on the phone trying to authorize scripts,” a nurse wrote.

“Most doctors in our area are refusing to prescribe any opioids, even the pain management doctors. This is forcing some patients to buy street drugs,” a primary care physician said.

Desperate Measures

The widespread denial of care has many patients taking desperate measures for pain relief. One in five are hoarding opioid medication because they fear losing access to the drugs. Many others are using alcohol, marijuana or the herbal supplement kratom for pain relief. A small percentage are using illicit drugs. Few have found medical treatments that work as well as prescription opioids.

  • 22% of patients hoarding opioid medication

  • 11% obtained opioid medication from family, friends or black market

  • 26% used medical marijuana for pain relief

  • 20% used alcohol for pain relief

  • 20% used kratom for pain relief

  • 4% used illegal drugs (heroin, illicit fentanyl, etc.) for pain relief

  • 2% found other treatments that work just as well or better than Rx opioids

“I know seven people personally that have gone to the streets to get pain relief. Four of them died because it was mixed with fentanyl. Two committed suicide,” one patient said.

“Since my doctor stopped prescribing even my small amount of opioids, I deal with days where I can’t even get out of bed because I hurt so much and I’m stuck turning to alcohol, excessive amounts of acetaminophen and NSAIDs,” another patient wrote. “Kratom has been the omly thing that has helped my pain.”

“I have been without a prescription for two years and have been getting medication on the street. I cannot afford this and I have no criminal history whatsoever. I have tried heroin for the first time in my life, out of desperation and thank God, did not like it. It was stronger than anything I need to help with pain,” wrote another patient.

Addiction and Overdoses Still Rising

While the guideline appears to have significantly reduced the dose and quantity of opioid prescriptions, patients and providers overwhelmingly believe it has failed to reduce opioid addiction and overdoses. Nearly 49,000 Americans died from opioid overdoses in 2017, but over half of the deaths involved illicit fentanyl or heroin, not prescription opioids.

“They are attacking the wrong problem. Pain patients are under strict scrutiny by their doctors and therefore have an addiction rate lower than the general population. The large numbers of deaths are among those who are using heroin and other illegal drugs,” one patient wrote.

“As a retired substance abuse counselor, these new guidelines do nothing to stop the real addict. It only hurts those of us in chronic pain,” said another patient.

“What happened to care for the elderly, disabled and sick?” asked one patient. “We are not the problem. The amount of prescription pain medicine has significantly gone down but the overdoses are continuing to rise. This is targeting the wrong people!”

HAS CDC GUIDELINE REDUCED OPIOID ADDICTION AND OVERDOSES?

Guideline Revisions Needed

An overwhelming majority (97%) of patients and healthcare providers believe the CDC guideline should be revised. When it released its recommendations in 2016, the agency said it was “committed to evaluating the guideline” and would make future updates “when warranted.” A CDC spokesperson recently told PNN there are several studies underway evaluating the impact of the guideline, but gave no indication that any changes are imminent.

Patients and providers say the the guideline is misunderstood, based on faulty evidence and needs revision.

“It is a falsified document created only to satisfy political pressure which demanded such a report. There is no medical/scientific evidence to support the conclusions made in the document,” a patient wrote.

“The CDC needs to correct their glaring error. They need to make sure that every doctor in America is re-educated and reassured that they can treat people with serious pain disorders without being jailed,” said another patient. “The CDC needs to stand up and admit their mistake, they need to correct the damage.”

“While the guidelines are useful, they should not have been made into mandatory rules followed by states and insurers. The patients with chronic pain issues are suffering. Can we revisit them?” asked a palliative care doctor.

SHOULD CDC GUIDELINE BE REVISED?

For more survey results and comments on the guideline, see “What Pain Patients Say About CDC Opioid Guideline” and “What Doctors Say About the CDC Opioid Guideline.”

Over 6,200 people responded to PNN’s survey. In tabulating the results, we did not include the responses of caretakers, spouses and friends of patients or those who live outside the U.S. We greatly appreciate everyone who participated and will be releasing more survey results in coming days.

CDC: Opioid Prescriptions Drop in 3 of 4 U.S. Counties

By Pat Anson, PNN Editor

The Centers for Disease Control and Prevention has released another study documenting how prescriptions for opioid medication have fallen dramatically in recent years. The study partially credits the CDC’s own guideline for the drop in opioid prescribing, but makes no mention of the suffering and suicides of pain patients who’ve been cut off from opioid medication.

Researchers at the CDC’s National Center for Injury Prevention and Control – which developed the agency’s controversial 2016 guideline -- looked at opioid prescribing trends nationally from 2015 to 2017.

They found significant declines in high dose opioid prescribing and in the average daily dose, which fell from 48.1 MME (morphine milligram equivalent) to 45.2 MME, a 6% decline. The guideline recommends that doses not exceed 90 MME except in rare instances.

Nearly 3 out of 4 counties experienced a reduction of 10% or more in the amount of opioids prescribed – the counties colored green in the map below. Relatively few counties, primarily in the Midwest and northern Rockies, had a 10% or more increase in opioid prescribing – counties that are marked in orange.

JAMA INTERNAL MEDICINE

JAMA INTERNAL MEDICINE

“The reduction in opioid prescribing that began in 2012 has accelerated in the United States. The amount of opioids prescribed decreased an average of 10.0% annually with reductions in 74.7% of counties from 2015 to 2017,” CDC researchers reported in JAMA Internal Medicine.

“Recent reductions could be related to policies and strategies aimed at reducing inappropriate prescribing, increased awareness of the risks associated with opioids, and release of the CDC Guideline for Prescribing Opioids for Chronic Pain—United States, 2016. Despite reductions in prescribing, opioid overdose rates continue to increase and are driven largely by illicitly manufactured fentayl.”

A similar CDC study in 2018 also documented a decline in prescriptions, but made no effort to measure the guideline’s impact on patients and whether it had improved the quality of their pain care or worsened it.  There is only a brief acknowledgement that both studies are limited by “the inability to determine the appropriateness of opioid prescriptions” -- a belated and backhanded admission by the CDC that its guideline is built on the false premise that it knows what an appropriate dose is.

Had the CDC looked in its own Twitter feed touting the latest study, it could have found insight from patients on the guideline’s effect on the quality of pain care.

“Yea this is why my wife has been bedridden for over 2 YEARS now as her doctor does NOT BELIEVE in pain medication.  And when we call all the other practices in the area its more of the same response. Either we don't prescribe opioids or we don't take pain patients,” one poster wrote.

“Let's not forget skyrocketing suicide and patients turning to the streets for relief. Good job you now have a #OpioidCrisis of your own making,” another poster wrote.

“When the numbers of a drug are more meaningful than the human lives they help. So caught up in numerical reduction people who once had managed pain are forced to suffer or #SuicideDueToPain. I guess this makes you folks very proud, to kill off the disabled,” said another.

CDC Twitter.png

“And here we see the CDC touting what they think is a great thing. Ironically of course they are likely NOT tracking how many patients committed suicides after being forcibly tapered for no medical reason,” said Dave Wieland, a pain patient and advocate.

“And you can bet they are NOT tracking how many patients who had been able to work on their stable medication dosage, have now been forced to apply for disability after having their medication also taken away for no medical reason. Oh yea that's right the CDC doesn't care about those things.”

When the CDC released its guideline nearly 3 years ago, it pledged to “revisit this guideline as new evidence becomes available" and to evaluate its impact on doctors and patients.

How has the CDC guideline affected you? As the third anniversary of the guideline approaches, PNN is conducting a new survey of patients and healthcare providers. Is the guideline working as intended?

Click here to take the survey, which should only take a few minutes.

Climbing Mountains Together

By Mia Maysack, PNN Columnist

Just about every time I'm in the bathtub, I contemplate slipping my head under water for a tad bit too long.  I do not consider myself suicidal, nor do I really want to die in the literal sense. But sometimes I reach a point when I'd do almost anything to kill this pain.   

Current situation: At least 30 cluster headache attacks thus far this week. Constant migraine going strong for about two weeks. Ongoing fibromyalgia flares. Working to pass kidney stones induced by stress and dehydration. Nausea, dizziness, fatigue and exhaustion have latched onto my soul like draining parasites. None of my go-to treatments have eased any of the discomfort.   

Despite my own battles, I consistently make myself available to others in the thick of their own private storms. The world needs more light and I can always use a distraction from my own body self-destructing. Win/win.  

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Recently I did what I could to talk a loved one off the ledge. This person is also unwell but in a very different way. Their infliction is not physical, but boils down to their own personal choices.  

You might imagine the frustration I feel when surrounded by others who could save themselves from drowning simply by standing up.

All the while, I've been standing strong for years but consistently get swept away by overwhelming undercurrents that are entirely out of my control. 

It can be difficult to encourage others to live when you're barely hanging onto a shred of hope for yourself. But I consider myself honored for the opportunity to try.  

I cannot keep track of how many times I've had to “die" in a figurative sense so that I could grieve the losses of countless aspirations, ideas, goals and dreams.  I've always been known as a positive person and that's most definitely who I am.  It is not an act, but people tend to think it’s easy for me and they couldn't be more wrong. 

It takes absolutely everything I have to lay my head down at night, knowing I'll awaken to the same demons I spent the previous day slaying. And that it'll likely remain this way, forever.  

My positivity began out of necessity and is a method of survival. Relentless pain every single day for 20 years straight is enough for anyone to question their sanity or possibly even lose it. As a matter of fact, we're currently mourning the medically assisted suicide of a fellow Pain Warrior, who endured similar pain for the same amount of time.   

I felt the need to write this so that others do not think they are crazy. Under our circumstances, it's understandable we might fantasize about no longer feeling this way. The mantras, positive quotes and clichés can only get us so far, and it can be downright devastating to not have adequate support, acknowledgment, validation or pain relief.  

I also had to write this because I want to convey that you are all the main reason why I still hold on. Knowing there's a community of others who truly get it, provides me with a purpose and reason to get myself out of bed in the morning.

It has become my mission to demonstrate that these mountains of misfortune aren't meant to be carried, but they can be climbed. They might even be moved if we all work together.   

No one can give us quality of life or the will to live outside of ourselves, but we can lean on one another during our deepest and darkest moments of despair. It's okay to have bad days, to be in a negative headspace, to question the purpose of all this, to feel angry, hurt or sad.  

As I envision the water calming my ailments and swirling its way down the drain, I think about the possibility of someone reading this at a time they needed it most. That thought gives me the strength I need. 

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Rising Overdoses Show CDC Guideline Not Working

By Pat Anson, PNN Editor

Rising suicides and drug overdose deaths led to another decline in U.S. left expectancy last year, according to two sobering reports released by the Centers for Disease Control and Prevention.

Americans born in 2017 are expected to live 78.6 years, about one month less than those born in 2016. Life expectancy has fallen or remained flat in the U.S. for three consecutive years. The UK is the only other country in the industrialized world where life expectancy is dropping.

“Tragically, this troubling trend is largely driven by deaths from drug overdose and suicide. Life expectancy gives us a snapshot of the Nation’s overall health and these sobering statistics are a wakeup call that we are losing too many Americans, too early and too often, to conditions that are preventable,” CDC director Robert Redfield, MD, said in a statement.

Redfield, who almost lost a son to a drug overdose, has been nearly invisible since becoming CDC director in March. He has previously called the opioid epidemic “the public health crisis of our time” and pledged to “bring this epidemic to its knees.”

So far, the CDC’s strategies, including its controversial 2016 opioid prescribing guideline, are not working. As PNN has reported, the guideline may even be contributing to the rising number of suicides and overdoses.

Over 70,200 people died of a drug overdose in 2017 – the highest number on record and nearly a 10 percent increase from 2016. Deaths involving illicit fentanyl and other synthetic, mostly black market opioids surged 45 percent, while deaths involving natural or semisynthetic opioids, mostly painkillers such as oxycodone and hydrocodone, remained flat.  The rate of heroin deaths also remained unchanged.

SOURCE: CDC

SOURCE: CDC

CDC researchers noted that their data is flawed. Drug overdose deaths often involve multiple drugs, and “a single death might be included in more than one drug category.” A death “involving” a specific drug also doesn’t mean that drug was the cause of death. It only means the drug was present at the time of death.  The competency of medical examiners and coroners who complete death certificates can also vary widely from state to state.

The CDC reported that over 47,000 people committed suicide last year, nearly 4 percent more than in 2016. Suicide is the 10th leading cause of death among all age groups – and the 2nd leading cause of death among adolescents and young adults aged 10 to 34.

Reports Ignored Role of Antidepressants, ADHD Drugs

The CDC reports did not explore the role of drugs used to treat depression, anxiety and attention deficit hyperactive disorder (ADHD) in either suicides or overdoses.

According to a recent study by the Substance Abuse and Mental Health Services Administration (SAMHSA), Xanax, Valium, Adderall and other psychotherapeutic drugs were involved in more overdoses in 2016 than prescription opioids.

A report this week from the Research Abuse Diversion and Addiction Related Surveillance System (RADARS), which tracks illicit drug use nationwide, underscores that emerging trend. RADARS found that the abuse of ADHD stimulants now exceeds the abuse of prescription opioids by Americans aged 19 or younger. The rising trend in “intentional exposures” to stimulants – which includes suicide – began in 2010 and is accelerating.    

PEDIATRIC CASES OF UNINTENTIONAL EXPOSURE (SOURCE: RADARS)

PEDIATRIC CASES OF UNINTENTIONAL EXPOSURE (SOURCE: RADARS)

“There have been more pediatric exposures involving stimulants than pediatric exposures involving natural/semi-synthetic opioid analgesics in every quarter since 4th quarter 2014. The increase appears to be driven by exposures where the intent of the patient was suicide,” the RADARS report found. 

“Multiple factors may contribute to the observed increase in suspected suicide exposures. The increase may reflect overall increases in suicides in the United States. It may also be a result of increases in stimulant misuse.” 

In the 2nd quarter of 2018, there were 822 reported cases of intentional exposure to stimulants among young people, while there were 503 cases involving opioid analgesics.