It’s a trickle at present, but the conversation around chronic pain between doctors and patients is no longer one way only.
Over the past few months, the constant messaging suggesting chronic pain patients are dying in dramatically increasing numbers because of opioid overdoses has been questioned.
Understand, the messaging was indeed clever. Chronic pain patients weren’t directly and specifically named, but the messaging caused listeners and readers to believe it was pain patients whose lives were being shattered, or even ended, due to opioids.
Then a few of us in media began to ask questions, and immediately the anti-opioid medication messaging began to falter. Patients suffering hideously from non-stop pain willingly spoke about the horrific conditions of their lives.
They voluntarily shared longtime doctors who had prescribed opioid medication which made their lives at least livable were under pressure to cut dosages dramatically, with the objective to end prescribing altogether.
There is pressure from supervisory medical bodies and governments. Ontario ended coverage of opioids on January 1, 2017, and now the elderly on fixed incomes, battling constant vicious pain, are required to pay for their not inexpensive medications out of pocket.
I interviewed the Federal Minister of Health at her request. Dr. Jane Philpott was ineffective in making the case against opioids for pain patients. In fact, she repeatedly told me my questions were “fantastic” and “excellent.” The only reason I asked the questions is that they reflected the need for relief from pain that can destroy the quality of life.
Last weekend, Dr. Lynn Webster of Salt Lake City, Utah, past president of the American Academy of Pain Medicine and co-producer of The Painful Truth documentary revealed the anti-opioid medication crusade was undertaken by U.S. insurance companies, which we’re finding opioid prescriptions expensive to cover.
Today I’ll be speaking with Dr. Stephen Nadeau, a scientist and neurologist with over 30 years in a U.S. tertiary care center treating patients with non-malignant pain. Dr. Nadeau heard my interview with the health minister and chronic pain patients and will share his own views on the subject.
Back with me today as well is Dawn Rae Downton, a national journalist and chronic pain patient who has a euthanasia plan in place in the event her opioid medication is arbitrarily stopped. Downton recently wrote a Globe and Mail column about her Fentanyl use.
Marvin Ross, who writes on health matters for Huffington Post Canada, has been challenging politicians and their anti-opioid agenda for some time.
If you’re a chronic pain patient, doctor, or even a politician who cares about the crushing weight of never-ending massive pain, listen today and then speak out.
Living pain-free is a human right. Pain patients should not be reduced to pleading for help and meeting arrogance and indifference as a reply.
Lyrica is the brand name for a prescription medicine called pregabalin. Although it is an anticonvulsant or an anti-epileptic drug, pregabalin is commonly prescribed to alleviate nerve or neuropathic pain – a type of pain caused by damage to, or a disease affecting nerves.
Neuropathic pain doesn’t normally respond to common painkillers such as ibuprofen or paracetamol. This is because the mechanisms that cause neuropathic pain are different from the underlying causes of other pain.
Pregabalin is closely related to gabapentin, a medication developed to treat partial seizures. This is a type of epilepsy caused by a surge in nerve cell excitability in one area of the brain.
Because nerve pain and epilepsy are related to abnormal levels of nerve excitability, an American neurologist tested gabapentin on patients in the mid-1990s and found it relieved their neuropathic pain.
Both are recommended as first-line treatments for nerve pain by the International Association for the Study of Pain. Lyrica was approved in 2004 in the United States for the treatment of partial seizures of epilepsy and some neuropathic pain.
Subsequently, pregabalin was developed as an improved version of gabapentin. The amount of pregabalin absorbed into the bloodstream increases in a linear fashion; unlike gabapentin, where the dose goes up, the proportion absorbed into the bloodstream goes down. This makes the effects of pregabalin more predictable than those of gabapentin.
In 2007, pregabalin was approved in the United States to treat fibromyalgia, a chronic disorder characterized by pain and muscle tenderness throughout the body. In Australia, it was registered by the Therapeutic Goods Administration in 2005.
In neuropathic pain, damaged nerve fibres are hyper-excitable, which means sensations such as light pressure or touch, which are normally barely felt, are perceived as painful.
Pregabalin (and gabapentin) are thought to interact with specific proteins in nerve endings in the brain and spinal cord. This reduces the entry of calcium ions into nerve terminals to dampen the release of pain neurotransmitter molecules in the spinal cord and brain.
Nerve pain is more severe than non-neuropathic pain. Patients with persistent nerve pain often describe it as intense burning or shooting sensations in their arms, hands, fingers, legs, feet, or toes. Because it’s often poorly relieved by available medications, the pain is unrelenting and intrudes into all activities of daily living.
Some groups have a higher prevalence of neuropathic pain than others, particularly those who suffer from conditions that cause damage to the nerves, such as those with diabetes or following a bout of shingles.
Neuropathic pain is also common after certain operations, such as a mastectomy, and affects about 35% of people with HIV infection. About 20% of cancer patients with chronic pain will have pain with neuropathic characteristics either because a tumor is pinching one or more nerves or because of damage to nerves that results from the cancer treatment itself.
The recommended pregabalin dose to relieve nerve pain is 150 mg to 600 mg per day. The doctor will initially prescribe a relatively low dose that is typically 75 mg once or twice daily, and 25 mg once or twice daily for the elderly or children. This will gradually be increased over several months.
In people with partial seizures, a doctor may prescribe pregabalin as an add-on treatment to other anti-epileptic medications. But it is not the best add-on treatment for everyone.
The doctor will gradually increase the dose, usually starting at 75 mg twice a day or 50 mg three times a day. The goal is to reach the dose that gives the best control of partial seizures without causing troublesome side effects.
Pregabalin capsules are marketed in strengths ranging from 25 mg to 300 mg. It’s listed on the Pharmaceutical Benefits Scheme in Australia, which means you pay up to A$38.30 for a pack of 56 capsules or A$6.20 if you have a concession card.
How many people use it?
When pregabalin was first listed on the Pharmaceutical Benefits Scheme in 2013 to treat neuropathic pain, the then health minister announced it would help 270,000 Australians. However, between June 2015 and 2016, pregabalin’s item number was claimed around 650,000 times. This may be because the effects of pregabalin are more predictable than those of its predecessor, gabapentin.
Side-effects are the main reason patients stop taking pregabalin for nerve pain. So it is really important that the initial dose is not too high and that the dosage gets increased slowly, especially in older people and those with impaired kidney function.
Pregabalin is excreted from the body in urine through the kidneys. People with impaired kidney function need lower doses of pregabalin as the drug would be excreted more slowly. Pregabalin is not broken down in the liver so it does not interfere with the liver breakdown of other medications.
Prolonged use of pregabalin does not produce tolerance and dependence, nor does it have the same potential for misuse, abuse, or addiction. Pregabalin can also be used safely with other painkillers such as paracetamol and morphine.
Another study is raising questions about the safety of the anti-seizure drug gabapentin, especially when it’s taken with opioid pain medication.
According to research published online in PLOS Medicine, combining gabapentin with opioid painkillers is associated with a significantly higher risk of dying from an opioid overdose than opioid use alone.
“Clinicians should consider carefully whether to continue prescribing this combination of products and when deemed necessary, should closely monitor their patients and adjust opioid dose accordingly,” wrote lead author Tara Gomes, Ph.D., principal investigator for the Ontario Drug Policy Research Network and an assistant professor at the University of Toronto.
Gomes and her colleagues analyzed data from 1,256 people in Ontario, Canada who died from opioid-related causes, and compared them with a control group of 4,619 people who also used opioid medication, but did not die of an opioid-related cause.
Overall, 12.3% of the people who died and 6.8% in the control group were prescribed gabapentin in the prior 120 days. After adjusting for additional risk factors, the researchers estimated that the combination of gabapentin and opioids was associated with a 49% higher risk of dying from an opioid overdose.
Although gabapentin is an anticonvulsant originally developed as a treatment for epilepsy, it is now widely prescribed for neuropathy and other chronic pain conditions, sometimes in combination with opioids.
Until now, no previous study had examined the risks of using gabapentin and opioid medication simultaneously, even though both are known to cause respiratory depression that can lead to an overdose.
“Our study has important implications for public health, particularly given the high degree of co-prescription. Almost 10% of patients treated with an opioid in our study also used gabapentin, while nearly half of patients treated with gabapentin were co-prescribed opioids,” said Gomes.
“Gabapentin is frequently used as an adjunct to opioids for neuropathic pain syndromes, but physicians may not be aware of the potential for respiratory depression with this drug; thus, increased awareness among patients and clinicians about the potential for a life-threatening interaction between these drugs is essential.”
The researchers believe pregabalin, an anticonvulsant that acts similarly to gabapentin, may also raise the risk of overdose when taken with opioids. But they were unable to test their theory because of the limited use of pregabalin during the study period.
Both pregabalin and gabapentin are produced by Pfizer — under the brand names Lyrica and Neurontin — and are two of its top-selling drugs. Pfizer did not respond to a request for comment on the Canadian study.
Gabapentin is approved by the FDA to treat epilepsy and neuropathic pain caused by shingles. It is also prescribed “off-label” for depression, migraine, fibromyalgia, and bipolar disorder. About 64 million prescriptions were written for gabapentin in the U.S. in 2016, a 49% increase since 2011.
Pregabalin is approved by the FDA to treat diabetic nerve pain, fibromyalgia, epilepsy, post-herpetic neuralgia caused by shingles, and spinal cord injury. It is also prescribed off-label to treat a variety of other conditions.
The CDC’s opioid prescribing guidelines recommend both pregabalin and gabapentin as alternatives to opioids, without saying a word about their potential for abuse or side effects. Pfizer has signed agreements with local prosecutors in Chicago and Santa Clara County, California to support the CDC guidelines and withdraw funding from patient advocacy groups and non-profits that question their validity.
“We believe… that gabapentinoids are being prescribed excessively — partly in response to the opioid epidemic,” wrote Christopher Goodman, MD, and Allan Brett, MD. “We suspect that clinicians who are desperate for alternatives to opioids have lowered their threshold for prescribing gabapentinoids to patients with various types of acute, subacute, and chronic noncancer pain.”
1. “[My partner] reminds me daily I am wanted and needed and not just a burden.” — Ally Small
2. “I often feel bad that I can’t do ‘normal couple things’ with him like walking or standing much, going out when our friends do or even holding hands properly, so we often struggle to find ‘things to do other than just hanging around (which is lovely in its own right). One day he suggested we could go to the local nature preserve and he could wheel me around. He didn’t suggest we go for a walk (which would either make me feel bad because I would have to tell him I can’t walk that much or we would both know that ‘walking’ really meant ‘rolling’) but actually used the proper wording. He didn’t know how much that simple syntax meant to me until a few weeks later. It was at that moment I realized that he just ‘got it and understood me more than either of us thought. It was the perfect example of automatic acceptance.” — Katie Taaffe
3. “My husband is a research scientist. We were together 11 years before I got my diagnosis. When we finally had a name for what plagues me (severe rheumatoid arthritis) he read all of the medical literature available and [now] attends all of my medical visits including exams but doesn’t say a word unless I ask him for his opinion. I once joked he was more of an expert about my illness than I was and he dropped what he was doing, wrapped me in a hug, and said, ‘You’re my hero. I’m just your biggest fan.’” — Joy Hanford
4. “My boyfriend came home from the marines when I was admitted for fistulas, and he slept on the floor the whole week so he could be with me in the hospital.” — Grace Shockey
5. “My boyfriend has been my partner for going on seven years and caretaker for four years. He gets my medication for me every night. He brings juice and keeps track of all of my different pills for different nights.” — Katelyn Burd
6. “My partner does little things every day. He helps me keep my dignity by not [making me] have to ask for help when I need it most but am too stubborn to ask.” — Emma-Jayne Tucker
7. “I have ulcerative colitis so spend a lot of time in the bathroom. My husband wanted to give me something I could put all around the house to look at and feel better and know he’s there for me when I’m not feeling well. He bought a dozen little jars with a piece of chalkboard on the front. He wrote our initials on the chalk and put a folded-up copy of the lyrics to our wedding song inside each bottle. There is now a bottle in every bathroom, the kitchen, and all the bedrooms. It makes me smile every time.” — Heather Hecht
8. “My husband comes to every appointment with me to get a better understanding of how my illness really affects me. When he knows I’m nervous, he says something to make me laugh, and when he can tell I’m scared, he reaches out to hold my hand. His little gestures touch my heart every time.” — Rebecca Lalk
10. “He calls me every day on his lunch break. If he knows I am having a rough day (or he just senses it) he will either text or call me at least every hour.” — Shelly Jones
11. “I suffer from chronic migraines, and at times I live in my dark, cold bedroom for days at a time. My husband of 19 years has done numerous little things that have touched my heart during my attacks, however, the one I love the most is when he climbs in bed and holds me. He doesn’t ask me how I am feeling because he already knows, he doesn’t try to fix my pain because unfortunately he cannot… he is simply there, loving me unconditionally.” — Robyn Eastwood
12. “We’d been walking for a while, and he realized by the end of the walk I was starting to lean on him. I try my best not to most of the time, but I just didn’t realize it that night. When he felt me putting my weight on him, he asked if I was OK. I brushed it off, but he could tell I was really hurting. He picked me up. I vigorously protested because I was so embarrassed. I never wanted him to see my weakness. Not only did he accept me, but he didn’t look at me any differently. Not even for a second. He carried on the conversation we were having and carried me all the way home.” — Destin Shyann
13. “He told me, while I was mid-migraine, that he was not leaving. He said, ‘I need to make sure you are going to be OK.’” — Kristin Marie Kaskeski
14. “When I was hospitalized for the first time my husband packed me a picnic tea party complete with a teapot, my best teacups, and even a pretty tablecloth. We also wrote letters to each other every day and exchanged them at night during visiting hours. He’s also done really hard things for me too. Like when I would call him on the first night of my hospitalizations begging for him to take me home, weeping, and he would say he loves me but no, it breaks his heart, but I have to do this. Through all of this, he’s my hero.” — Claire Nieuwoudt
15. “I recently had one very good day where I had managed to shower, dry my hair, get dressed, and put on makeup. I joked, ‘I’m pretending to be a normal person today.’ He wrapped his arms around me, kissed me on the forehead, and said, ‘Just be a normal you.’ It told me he accepted me for who I am, illness and all.” — Jen Keating
16. “He lets me ask for help. He knows it makes me feel bad if he swoops in every time I struggle to open something or pick something up. He’s there when I need him, but he lets me make that call and that means so much.” — Emily Matejic Souders
17. “He gave up school and a fantastic job to be my 24/7 caregiver — riding out each seizure with me, carrying me to the bathroom, bathing me, taking me to each appointment, etc. He’s given up everything to fight for me.” — Melody Hitzeroth
18. “[My partner] washes my hair and ties my shoes when I don’t have the energy. I have multiple sclerosis (MS) and am seven months pregnant. Small things add up.” — Jordann Chitty
19. “He will just hold me. Any time I am symptomatic he will just hold me and it’s enough to help improve my mood and make everything seem tolerable and manageable. I don’t know if I would be doing as well as I am without him.” — Hallie Ervin
20. “[My partner will] ignore it, but not me. I’ll be doubled over, and she’ll ask if I’m good, and if I say, ‘Yes just dealing,’ she’ll leave it at that. She won’t hover or get in my way. She just keeps on about her business, still talking and interacting as much as she sees I can stand.” — Loretta Woods
21. “He believed me and helped fight for answers.” — Jennifer Peterson
U.S. Attorney General Jeff Sessions recently shared his idea for solving the opioid crisis: aspirin, sleep, and less marijuana.
Speaking at an event in Tampa on Tuesday to celebrate Ronald Regan’s birthday, Sessions said his goal for 2018 is to see a greater decline in the number of opioids prescribed (he said last year there was a 7 percent decline).
“That may be an exaggerated number, they had it as high as 80 percent. We think a lot of this is starting with marijuana and other drugs too,” Sessions said. “But we’ll see what the facts show, but we need to reduce the prescription abuse and hopefully reduce the addiction that’s out there.
On Wednesday, Sessions doubled down on his previous remarks during a speech to Tampa law enforcement.
“I am operating on the assumption that this country prescribes too many opioids. People need to take some aspirin sometimes and tough it out a little bit,” Sessions said, then cited White House Chief of Staff John Kelly as someone who refused to take painkillers after surgery on his hand. “You can get through these things.”
Sessions’ remarks were met with criticism from the chronic pain community, who explained that pain relief isn’t always as simple as “taking aspirin and going to bed.”
LITTLE JEFF SESSIONS HAD OBVIOUSLY NEVER BEEN IN CHRONIC PAIN. LET HIM LIVE A WEEK WITH WHAT I ENDURE DAY IN AND DAY OUT. HE’LL BE SINGING A DIFFERENT TUNE. HE SHOULD LEGALIZE MARIJUANA FOR PEOPLE IN CHRONIC PAIN SO THEY CAN WEAN OFF OF OPIODS.
I MAY NOT PLAY A DOCTOR ON TV, BUT I AM A REAL ONE, AND I THINK JEFF SESSIONS IS THE WORST MAN IN AMERICA TO BE GIVING MEDICAL ADVICE OR CREATING HEALTH CARE
Sessions’ comments are at odds with data on opioid use and addiction. The opioid crisis claimed approximately 63,000 lives in 2016, according to data from the National Center for Health Statistics. However, syntheticopioids like fentanyl caused about a third of these deaths — which have increased 88 percent per year since 2013. Heroin caused about a fourth, and prescription opioids caused 23 percent, down from 26 percent in 2009.
Studies show the majority of people prescribed opioids do not become addicted (only between 1 and 12 percent develop an addiction). And a 2017 study found that 51.9 percent of people entering treatment for opioid use disorder started with prescription opioids, which is down from 84.7 percent in 2005. Among those, research has found that 75 percent of all opioid misuse starts with medication not prescribed to them.
Addiction to opioids often begins in the doctor’s office. These drugs are typically the only option to manage pain after an operation or in patients with serious injuries. They’re also frequently prescribed to patients with chronic pain, and it’s these patients who are most at risk for opioid addiction.
Ted Price is an associate professor of neuroscience at the University of Texas at Dallas. His work focuses on the molecular mechanisms that cause pain to persist even after the injury that triggered it has healed.
What he and his colleagues have discovered is that a buildup of a particular substance between neurons plays a major role in our experience of ongoing pain. That new understanding could help lead to a new treatment for chronic pain that leaves addictive drugs out of the equation altogether.
On KERA’s Think, he talks about the future of chronic pain research — and what it might mean for the U.S. opioid crisis, which claimed more than 50,000 American lives in 2016.
It can go beyond acute feelings of pain. Chronic pain can result in a host of problems including cognitive disorders, clinical depression, and hair loss. The NIH reports about 11 percent of American adults to suffer from this condition.
“For many, it’s very disturbing. Even when they’re not doing anything, they’ll feel this stabbing or burning pain coming from the limb,” Price says. “Normally, pain is a danger signal to the brain that something’s wrong, but when they look, nothing looks wrong.”
When we feel pain, nerve cells called “nociceptors” are activated and send that signal to the brain. When working normally, this process is helpful: It tells you that you’re hurt and you need to protect yourself. After a severe injury or surgery, nociceptors fire frequently and are meant to stop once you’ve healed.
But in the roughly 30 percent of patients who develop chronic pain, nerve cells rewire themselves before healing, which can cause them to fire at random, months after the injury is gone.
Price’s research focuses on this “rewiring” process, called “neuroplasticity.” It’s the idea that the nervous system can “rewire” itself throughout our lives to help us adapt to our surroundings.
“We were originally looking at how brains learn. We had this idea that pain is a learning phenomenon, too. Synaptic plasticity, or the cellular process of learning, is common to things that are beneficial and things that aren’t.”
There are some really complex genetic factors at play,” Price says, “but it really is a plasticity disease.”
Chronic pain, like opioid abuse, is often stigmatized. Price argues it’s not as important to try and quantify pain as it is to treat it more effectively. Chronic pain often affects every aspect of people’s lives. In that sense, the chronic pain epidemic and the opioid crises are one and the same.
“There’s no question that opioids are effective for acute pain,” Price says, “but the issue that we have right now is that the drugs that we have to treat chronic pain don’t work very well and the drugs that are efficacious are incredibly dangerous.”
While opioids are still often necessary after surgeries, Price says there’s evidence that they may actually increase the likelihood of chronic pain after surgery.
“We need to have better, non-addictive therapeutics that are not only going to treat acute pain but also prevent the development of chronic pain,” he says. “When you take a drug more frequently over time, it requires a larger dose to achieve the same efficacy. This will actually happen in almost everyone taking opioids.”
Tolerance is most problematic when people begin taking opioids again after a period without, Price says. Many chronic pain patients experience pain after a long period following surgery. They may take what used to be their normal dose of opioids. In many cases, this dose is enough to induce an overdose, as they may have lost their tolerance, he says.
There is no cure yet. But Price says that science is very mature.
The leap from preliminary research to clinical trials is difficult to navigate for many scientists, especially those in an academic setting. So Price, and many researchers like him, are starting their own companies to try and bring their research into realization on their own.
“If … there is one thing I try to convey to [my colleagues] … there really isn’t anybody else who is going to be quite as passionate about [turning] your ideas into medications as you are. […] It’s a steep learning curve … but it’s very exciting and extraordinarily rewarding.”
I would argue [we’re] completely failing in trying to treat this,” Price says. “There are some interesting treatments [for migraines] which may be approved by the FDA this year, but we need to see successes like this across the board.”
Price stresses the need to conduct clinical trials as early as safely possible so researchers don’t waste time on disproved hypotheses and patients can get treatments sooner. Price points to McGill University, in Montreal, as a good example. He attributes the success of the Canadian university to its emphasis on collaboration between basic science researchers and clinical trial labs.
Treating chronic pain takes a multimodal approach, Price says. Treatments should go beyond painkillers and other medications; for example, exercise, whenever possible, can help dramatically. Managing pain, much like managing an epidemic, requires creativity and collaboration.
People who live with chronic pain need options beyond prescription opioids, and it’s up to the British Columbia government to provide more services such as physiotherapy, says the head of a group that supports patients and their families.
“There has really been a lack of any appropriate response to chronic pain in our province and in our country,” said Maria Hudspith, executive director of Pain BC, the only non-profit society in Canada to bring together clinical experts and policy-makers to work on chronic pain management initiatives.
Besides painkillers, patients must have access to physical therapy and psychological support but wait for lists stretch from one to three years at the few specialized pain clinics in the province, she said.
“We’ve seen this overreliance on the prescription pad as the only tool in the toolbox,” Hudspith said. “Some people may become dependent on the medication in order to function and some of those people may become addicted.”
One in five people in B.C. lives with pain that can be relentless and crippling but she said some communities have no specialized healthcare providers for patients who need intervention after an injury or surgery, for example.
A lack of dedicated pain services means patients make more doctorsvisits and may require more surgeries, resulting in high healthcare costs and poor quality of life, Hudspith said.
“There’s a growing recognition that this is a huge problem that is really, in any way, at the root of a lot of issues that we’re seeing.”
Hudspith said Pain BC has been in discussions with the provincial government to expand services.
Neither the Ministry of Mental Health and Addictions nor the Health Ministry could provide any information when the provincial government was contacted for comment.
The Food and Drug Administration has just issued what’s called a “Medwatch Alert” warning that Epidural steroid injections or “ESIs” for back and neck pain can be extremely dangerous. The alert says: “Injection of corticosteroids into the epidural space of the spine may result in rare but serious adverse events, including loss of vision, stroke, paralysis, and death.”
Epidural steroid injections – and catastrophic injuries from them – were the subject of my debut investigation for The Dr. Oz Show almost exactly a year ago. The epidural space is an area between the spinal cord and the bony structure of the spine.
Our investigation revealed that the steroids – called corticosteroids – used for epidural injections are not even FDA approved for this purpose and yet ESIs are done nearly 9 million times a year, according to an analysis by Dr. Laxmaiah Manchikanti.
In 2009, the FDA convened a group to study the safety of some types of epidural steroid injections. In its new notice, the FDA said that the group’s recommendations still are not ready and will be released when they are.
Dennis Capolongo of the EDNC, a group that has been campaigning against epidural steroid injections for years, called the FDA’s new warning “bittersweet” because it did not go further. Capolongo wants the FDA to go beyond telling doctors that injecting steroids into the epidural space COULD have severe side effects and instead state that they MUST NOT do it.
In February of this year, Australian and New Zealand health authorities came out with exactly that stronger language, stating that steroids like this, “MUST NOT be used by the intrathecal, epidural, intravenous or any other unspecified routes.” The South African government issued similar warnings, according to Capolongo.
Since the FDA is still actively studying these procedures, it will be interesting to see if the agency takes any further steps. If and when it does, you can bet I’ll pass the information along.
If you aren’t on this medication, chances are you know someone who is. It’s used to treat everything from pain to mood disorders and can be just what the doctor ordered for many.
But now, there is mounting research uncovering misuse of and even a black market for this popular prescription.
We’re talking about gabapentin. It’s approved for some types of seizures and nerve pain.
Doctors also use it off-label to treat everything from insomnia to migraines to anxiety. Sixty-four million prescriptions of it were sold in the U.S. in 2016, up more than 60% from four years earlier.
The thing is, experts, say there is growing evidence it’s being abused, too. It’s even being sold on the streets under the name “Johnnys.”
Dr. Joseph Insler, an addiction psychiatrist, says he’s seeing it all too often.
“Sometimes, I’ve even experienced patients ask me for their “Johnnys” and then they’ll, maybe, catch themselves and say, ‘No, no, no. I mean gabapentin’,” he says.
“I think that some individuals may say that they use it to get high, and others may say they use it and get a drowsy effect. So, we’re talking about the euphoria versus sedation, “ says Rachel Vickers Smith, Ph.D.
Dr. Vickers Smith wrote her dissertation on gabapentin abuse when studying drug abusers in Appalachia.
“We found a nearly 3000 percent increase from 2008 to about 2014 in individuals reporting gabapentin abuse for the purposes of getting high,” she says.
We wanted to see for ourselves, so we searched online. We easily found people talking about taking “Johnnys”, or gabapentin, to get high. There were also threads of people trying to spread awareness about the abuse.
Experts say gabapentin is typically misused by substance abusers who mix it with other drugs.
But, Dr. Insler says it’s also possible for people with legitimate prescriptions to misuse, too.
He says, “If somebody’s taking excessively high doses or needing early refills” or if their mood changes, family members or clinicians should see these signs as red flags.
A growing body of research shows the problem of abuse, especially among substance abusers is clear. But some experts also worry about the number of prescriptions being handed out.
A recent New England Journal of Medicine letter warned that “clinicians who are desperate for alternatives to opioids” are “increasingly prescribing gabapentin” and that “evidence suggests that some patients misuse, abuse or divert gabapentin.”
Dr. Rachel Vickers Smith says, “ I think that’s why it’s really important to get out the message,” about abuse, in general.
Gabapentin is not a controlled substance or scheduled drug on the Federal level.
We reached out to several government agencies. There was little information on potential abuse although the National Institute on Drug Abuse pointed us to existing research and the DEA says it is beginning to receive calls.
Dr. Vickers Smith says, “ I don’t think that gabapentin abuse is on the CDC, DEA’s, NIDA’s radar, in part because we had this opioid epidemic.”
All experts we talked to stress that this is NOT the next opioid epidemic, but they believe gabapentin abuse is something to watch closely and believe more research is needed.
We contacted two of the manufacturers of gabapentin, including Pfizer, which told us, “Gabapentin is an important treatment option for their approved indications”.
We have received so many complaints about duloxetine side effects that we have lost count. Far more disturbing is the number of people who tell us how hard it is to discontinue this drug.
Decades ago doctors might have told patients taking a drug like Cymbalta that if they experienced anxiety, irritability, or strange sensations after stopping the drug, it was probably their underlying psychological problem returning. Now we know it is withdrawal from the medicine.
Cymbalta was originally approved by the FDA in 2004 for the treatment of major depression. It is officially an SNRI-type antidepressant. In doctorspeak, that means it is a serotonin-norepinephrine reuptake inhibitor and is somewhat similar to other antidepressants such as Effexor(venlafaxine) and Pristiq(desvenlafaxine).
In other words, there was a drug that could relieve your blues and your aches and pains. And the drug company that makes Cymbalta (Lilly) has been aggressively marketing it as a good way to deal with chronic low back pain and osteoarthritis. Perhaps you have seen the commercials on TV promoting the pain-relieving power of the drug with the slogan “Cymbalta can help.” It sounds almost too good to be true.
Ah…and there is the rub. Although there is a long list of serious side effects mentioned during the commercial, the video images seem quite reassuring and trump the scary message the FDA requires for this medication. So, let’s set the record straight. Here, without visual interference, are a list of potential complications associated with this medication.
Depressed mood, suicidal thoughts and behavior, suicide
Such a long list of side effects makes your eyes glaze over after the top 3 or 4. That is why we have included stories from real people so you can better understand what these complications feel like.
Even though such side effects are scary, there is another problem with Cymbalta. When people try to stop taking this drug they frequently report unpleasant withdrawal symptoms. An organization (QuarterWatch) that monitors the FDA’s database of serious adverse drug events has noted that:
“We observed a signal for serious drug withdrawal symptoms associated with duloxetine (CYMBALTA), a widely used antidepressant that is also approved to treat arthritis and back pain, anxiety, and fibromyalgia. In the first quarter of 2012, the FDA received 48 case reports of drug withdrawal identifying duloxetine as the suspect drug. They described a wide spectrum of withdrawal effects that began when the patients stopped the drug, including blackouts, suicidal thoughts, tremors, and nausea. Several cases involved hospitalization.
Probing deeper into the scientific record for duloxetine we found that withdrawal symptoms were reported in 44-50% of patients abruptly discontinuing duloxetine at the end of clinical studies for depression, and more than half of this total did not resolve within a week or two. In addition, we identified a serious breakdown at both the FDA and the manufacturer, Eli Lilly, and Company, in providing adequate warnings and instructions about how to manage this common adverse effect.”
Doctors have taken to calling this “discontinuation syndrome.” These clinical words do not do justice to what it is like to stop antidepressants like Cymbalta, Effexor(venlafaxine), Paxil (paroxetine), Pristiq (desvenlafaxine), or Zoloft(sertraline) suddenly.
Again, a list of symptoms does not do this problem justice. Below you will read some stories from people who have posted their comments to this website. We would love to hear your story, positive or negative. Share your experience with Cymbalta or any other antidepressant below.
Should you wish to learn more about dealing with depression through some other strategies, we offer our Guide to Dealing with Depression. You will also find a whole chapter on prescribing mistakes doctors make when treating depression and fibromyalgia in our book, Top Screwups Doctors Make and How to Avoid Them.
“My lovely, young daughter-in law, who was about to celebrate her 29th birthday, was prescribed Cymbalta, Klonopin, and Ambien and has committed suicide. “She told her physician and her therapist that she’d had thoughts of suicide but no one took her seriously. She suffered from depression, as well as an eating disorder, and had very low body weight. She also used alcohol. “Please remind your readers of the potentially disastrous effects these chemicals can cause when taken carelessly or in combination with alcohol.”
This from – P.J.: “I have been on Prozac over the last 20 years off and on and it finally stopped working. The last time I took it about 2 years ago I was taking the generic from Barr – the blue and white capsule. I was feeling as if I were in the deepest dark hole there ever was.
“My doctor put me on Cymbalta from which I had a lot of side effects such as palpitations, feeling constant dread, panic attacks, sweats, lightheadedness, and a general feeling of not being well.
“She added Abilify which put me over the edge. I was in the worst depression I have ever been in. Finally, after living like this for several months, I asked to be put back on Prozac. I was taking the generic from Sandoz. When the prescription ran out I ended up on the big blue and white capsules from Barr.
“Over the last couple of weeks, it has been constant crying spells, arguing with everyone, and feeling pretty low. I talked to my doctor and she wrote the prescription for Sandoz only generic. The blue and white capsules are like taking a placebo. My doctor said she had had other patients who complained of the same thing and she had to write prescriptions for a certain generic or name brand.”
Click Here to Visit the Store and find Much More…. – R.P. says: “I took Cymbalta for 3 days and thought I’d go nuts. I’m off it now and refuse to try any other drug like this. My main complaint was extreme hot flashes that estrogen wouldn’t help. I thought I’d be given Prozac but was given Cymbalta instead. It was a rough 3 days and I stopped it last night. I am extremely tired yet cannot sleep at night. I think I was sweating even worse and my legs started feeling like I had Lyme disease again. And to be honest, within those 3 days of taking it, I didn’t contemplate suicide, but I had this crappy attitude of “who would care?” – Nancy relates how hard it was to get off Cymbalta: “It took me 18 months to get off Cymbalta, with no doctor’s help. I can hardly believe that doctors have no exit strategy for this dangerous drug. I had to find this out on my own from reading and as soon as I weaned off that – about a month, the tinnitus that had occurred decreased almost completely. No doctor told me this.” — J.K. shares a parent perspective: “My daughter experienced severe side effects when trying to come off Cymbalta – she had nausea, vomiting, lost peripheral vision for 24-48 hours, had to shake, etc. This was while she was doing a clinical in a hospital for college. Had she known she would have stayed on it until after clinical. I called the manufacturer and they acted like there were no such side effects from withdrawal.
“She too took apart the capsules and it took a while, but finally she is free from that drug. I think it is a crime that the manufacturers don’t publish more detailed information concerning withdrawal. They could even make money selling a one-month or two-month step-down prescription so individuals aren’t taking the capsules apart themselves.” – P.C. Tells what it is like to switch around from one drug to another: “I just turned 52 today. I went on a very low dose of Zoloft about 8 years ago to treat generalized anxiety disorder. It really did help for a long time. I recently have been pretty depressed (however I can cover it up really well) and my psychiatrist switched me to Effexor which was terrible for me. Now I’m trying Cymbalta which has not done anything either except make me feel more anxious and headachy and weird.”
“I am a registered nurse and I do not understand what the long-term effects of these meds are and I am concerned. I really want to get off and see what I can do naturally for myself.” – K.T. tells what it is like to try to stop Cymbalta: “Getting off Cymbalta is challenging but not impossible. I, too, experienced light-headedness, dizziness, and “brain zaps.” I described it as being able to “hear my eyes move.” It sounded like the light sabers on Star Wars. Very strange and disconcerting.
“The key is to do it very very slowly. Take the capsules apart and begin by removing 5 or 10 of the tiny balls inside. Do this for a week or so, then slowly increase the amount you remove each week or two as you can tolerate it.
“Your doctor will probably be no help at all. Mine wasn’t. He instructed me to wean off over a two to three-week period and I almost lost my mind. I did it myself over about a YEAR or more. Be patient. I am completely off now and feeling GOOD.” – Karen’s story: “I was prescribed Cymbalta ‘off-label’ to manage fibromyalgia pain When I stopped taking it because it wasn’t delivering on the promised effect of reducing my pain, I became so horribly depressed that I required hospitalization as I had become SUICIDAL!
“I will NEVER take another anti-depressant for an off-label purpose….such as Elavil/amitriptyline as a “sleep aid” which is very commonly prescribed.
“I believe it should be criminal to prescribe ANY drug for a purpose other than the one it was approved to treat.” – R.H. and Erectile Dysfunction: “I’m a 76-year-old man, my libido was very low. Taking Cymbalta for peripheral neuropathy added ED as a side effect of the drug. I had a testosterone blood test; it was 1/3 what the minimum should be. So I’m taking Androgel to raise testosterone levels and it is magic. I have great libido now and am working on minimizing the Cymbalta pills. In the meantime, I have been prescribed Cialis for the ED. Each pill solves the sex problem for a couple of days.” – M.O. on stopping Cymbalta:
“I have the exact symptoms as everyone else and it’s been a week. I only took Cymbalta for 2 months, but the side effects from stopping it are horrible. My doctor didn’t, nor did anyone else tell me, about any side effects and I did read the insert. Most of the time the listed side effects of meds don’t bother me, so I figured no problem. “From reading other posts on this website and on other sites, the drug seems to affect every person the same way. I would never have taken it for my neck pain if I had known about the likelihood of side effects. The worst part for me is the dizziness, the brain zings and the sudden burst of tears for no reason. I would never take this drug again. I think the FDA needs to do longer studies on all drugs and be honest with their findings and that doctors should be honest and tell their patients what really happens when you take Cymbalta.”
Please add your own experience below in the comment section.
