by Paul Clement
Pain and hemophilia go hand-in-hand. During a joint or muscle bleed, blood fills the joint cavity or makes muscles swell. Nerves alert the brain, prompting the body to respond. The result? Pain. Repeated joint bleeds cause the joint cartilage to deteriorate, causing arthritis. The result?
Long-lasting chronic pain.
Types of Pain
Pain is either acute or chronic. Acute pain lasts hours, days, or a few months, while the body is healing. Chronic pain lasts six months or longer. Acute pain is considered necessary, even beneficial—alerting our bodies to danger or injury, and prompting us to react (think: touching a hot stove), protect ourselves, rest, and get treatment. Chronic pain, on the other hand, can affect us physically and mentally and, if not properly managed, can be destructive and debilitating. For people with hemophilia:
- Acute pain is usually caused by bleeding that leads to swelling in joints and muscles. Acute pain resulting from a bleed is often described as sharp, tender, or throbbing.
- Chronic pain is usually caused by arthritis in joints, a consequence of bleeds that have damaged the joint’s cartilage. Chronic pain is often described as aching and tiring. Pain level may vary during the day: higher in the morning, and then decreasing through the day as the joint is used.
Acute pain and chronic pain require different treatment approaches. But in both cases, the goal of pain management is not necessarily to eliminate the pain through the use of drugs, but to reduce it to a level that makes the pain manageable.
Acute pain is usually treated quickly and effectively by physicians and parents. Treatment involves not only reducing the level of pain, but also eliminating the cause of the pain.
For chronic pain, where eliminating the cause—for example, joint damage—may not be possible right away, the goal of treatment is to improve your ability to function by (1) reducing the level of pain, and by (2) addressing the psychological issues that accompany chronic pain. Eliminating the cause of chronic pain in hemophilia may require surgery, such as joint fusion or joint replacement. But even without surgery, there are still many things you can do to manage your pain so it has less effect on your physiological well-being, your ability to sleep, and your daily activities.
Managing Acute Pain
Bleeding into joints and muscles causes acute pain. To limit acute pain, you must stop the bleeding as soon as possible with your prescribed factor concentrate or bypassing agent.
Using additional, or adjunct, therapies can often help reduce swelling and pain. Adjunct therapies are designed to increase the effectiveness of the primary therapy, often allowing you to use a lower dose of pain medication, and possibly for a shorter time. In some cases, adjunct therapy can reduce or eliminate pain without pain medication. One adjunct treatment that helps reduce pain from bleeds and speeds healing is RICE: Rest, Ice, Compression, Elevation.
- Rest the injured body part for 24 to 48 hours to prevent reinjury of the site.
- Ice the site for 10 to 15 minutes at a time, using a gel-filled cold compress, Cryo/Cuff®, or bag of frozen peas or crushed ice wrapped in a towel, four to eight times a day. Wait at least 40 minutes before reapplying. Icing reduces blood flow to the injured area, which helps control bleeding and swelling. Ice also helps numb pain. To avoid freezing and damaging the skin, limit the time when the ice or cold object is directly on the skin.
- Compress the affected area with an elastic bandage to help reduce bleeding and swelling.
- Elevate the injured body part above the heart to help reduce swelling and the throbbing sensation common in lower extremity bleeds.
If RICE alone doesn’t reduce your pain enough, you may need a pain medication, or analgesic. Most people with hemophilia use over-the-counter (OTC) analgesics to treat mild to moderate acute pain. For more intense pain, you or your child may need more potent, prescription-only analgesics.
Pain medications to treat acute and chronic pain are often divided into three groups:
- Non-opioids, including acetaminophen and non-steroidal anti-inflammatory drugs (NSAIDs).
- Opioids (narcotics), including hydrocodone and morphine.
- Adjuvant analgesics, a loose term for many medications, including some antidepressants and anticonvulsants, originally used to treat conditions other than pain.
Non-Opioids for Acute Pain
Non-opioids are the drugs of choice for mild to moderate acute pain.
Acetaminophen is the analgesic most often recommended for people with hemophilia because it doesn’t affect the blood’s clotting ability, as do most NSAIDs. Brand names of
acetaminophen include Tylenol® and FeverAll®. Although acetaminophen is relatively safe when used as directed, it’s sometimes called the most dangerous of OTC analgesics, because the maximum dose and the toxic dose are relatively close. High doses and long-term use of acetaminophen may cause severe liver damage—an especially serious concern for people infected with hepatitis C. Acetaminophen overdose accounts for 56,000 emergency department visits, 26,000 hospitalizations, and over 450 deaths annually in the US—and most of these overdoses are accidental.
Accidental overdose on acetaminophen often happens when people take more than one drug without carefully reading the labels. Acetaminophen is a component of more than 600 drugs, including many OTC drugs sold for purposes other than pain relief (for example, some cold medications), but this may not be clearly shown on the label.1 Acetaminophen may also be combined with other painkillers (for example, opioids) and sold under a brand name, such as Vicodin® and Darvocet®. Accidental overdose can happen if you take acetaminophen plus another drug that you don’t realize also contains acetaminophen. To prevent overdosing with acetaminophen, carefully read the label of any drugs you are taking, and consult your physician or pharmacist for the correct dosage.2 And remember, when it comes to acetaminophen dosing, more is not better.
NSAIDs are a large group of analgesics that include common OTC pain medications, such as aspirin, ibuprofen (Motrin®, Advil®), naproxen (Aleve®, Naprosyn®), and ketroprofen (Orovail®). Many other NSAIDs, such as meloxicam (Mobic®), are available by prescription only. No two NSAIDs work in exactly the same way. Each has slightly different side effects and effectiveness, and each lasts for a different length of time. Unlike opioids (see Managing Chronic Pain section), all NSAIDs and acetaminophen have a dose ceiling: the maximum safe or effective dose of a drug. Taking doses above the ceiling dose offers no additional therapeutic benefits, but significantly increases the risk of serious or life-threatening side effects, including kidney failure, liver failure, and gastrointestinal bleeding.
NSAIDs reduce pain, but unlike acetaminophen, they also have an anti-inflammatory effect. This means they help reduce swelling and inflammation in joints, often providing more relief than acetaminophen. But NSAIDs have drawbacks for people with bleeding disorders:
- Almost all NSAIDs reduce the blood’s ability to clot, by inhibiting platelet aggregation (when platelets stick together to form a platelet plug). This results in prolonged bleeding.3
- NSAIDs can cause gastrointestinal (GI) bleeding and ulcers.
- When used long-term at high doses, NSAIDs can harm the kidneys and, to a lesser degree, the liver.
Physicians don’t often prescribe high-dose NSAIDs for people with hemophilia. If used, NSAIDs should be taken at the lowest effective dose, for a limited time, and in limited circumstances. Never give your child with hemophilia NSAIDs without consulting your hemophilia treatment center (HTC) staff!
Some NSAIDs are simply dangerous for people with bleeding disorders, and should not be used under any conditions. Aspirin (acetylsalicylic acid or ASA) deserves a special warning: Aspirin should never be used by anyone with hemophilia because it forms an irreversible chemical bond with COX-1, an enzyme in the blood involved in the clotting process. The bond with ASA, or aspirin, prevents platelets from aggregating to form a platelet plug—the first step in the blood-clotting process. This effect on platelets is irreversible and lasts for the life of the platelet, about 7 to 10 days. A person with hemophilia who takes aspirin risks GI bleeds and uncontrolled spontaneous bleeding. Aspirin is found in several dozen OTC medications, including many (like Pepto-BismolTM) not indicated for pain relief. Carefully check all OTC medications for the presence of aspirin, acetylsalicylic acid, or ASA—and if you see any of these on a label, don’t use the product!
Another dangerous product is ketorolac (prescription-only, brand name Toradol®). It’s more likely than other NSAIDs to cause GI bleeding. The risk of GI bleeding can be reduced (but not eliminated) by using OTC topical NSAIDs, such as diclofenac (Pennsaid®, Voltaren®), which are almost as effective as oral NSAIDs, with a lower risk of side effects. But keep in mind that these drugs are absorbed systemically; the risk of side effects is similar to the oral form, though lower. Check with your hematologist about the tendency of any NSAID to cause GI bleeding, and its effect on clotting.
Low-dose OTC ibuprofen (Advil®, Motrin®) is an NSAID commonly used to treat pain and inflammation. Ibuprofen also slows platelet aggregation, but much less so than aspirin; and the effect is temporary, lasting only about four hours. While taking ibuprofen, you may have no excessive bleeding problems, but do not take it when a bleed is in progress, because it can increase or prolong bleeding. High-dose ibuprofen (600 mg or 800 mg tablets) is a prescription-only medication with a greater risk of GI bleeding; use only under a doctor’s direct supervision.
Selective COX-2 inhibitors (coxibs) are a different class of NSAIDs, developed specifically to reduce the risk of gastrointestinal bleeding and ulcers for people taking the drug for an extended time. By targeting only COX-2 (not COX-1 and COX-2, as other NSAIDs do), these drugs have less effect on platelet aggregation. But National Hemophilia Foundation’s (NHF) Medical and Surgical Advisory Council (MASAC) reports some incidences of bleeding, and recommends using coxibs at the lowest effective dose, for a short time.4 Currently, only one coxib, celecoxib (Celebrex®), is available in the US. Although NHF recommends this drug for short-term use, many people with hemophilia use it long term to treat mild to moderate chronic joint pain. Always consult your HTC about NSAID use.
Treating mild to moderate acute pain is almost always manageable with OTC or prescription-strength acetaminophen or NSAIDs. To treat severe acute pain, you may need to use an opioid for a few days, or a combination analgesic containing an opioid plus an NSAID or acetaminophen. For example, the combination prescription analgesics Darvocet, Percocet®, and Vicodin all contain both an opioid and acetaminophen. (Note: Percodan®, another combination analgesic, contains both an opioid and aspirin, and should not be taken by people with hemophilia.)
As part of an overall pain management plan, your physician may also prescribe adjuvant analgesics, drugs with no direct pain-relieving properties. Medications to treat insomnia, anxiety, depression, and muscle spasms can significantly help some patients. Combination analgesics, opioids, and adjuvant analgesics are usually reserved for severe acute pain and chronic pain.
Managing Chronic Pain
Unlike acute pain, chronic pain may be underappreciated and undertreated by many healthcare providers. Chronic pain often creeps up slowly, over time. In people with hemophilia, it’s usually first apparent as recurring joint pain that tends to be more severe in the morning, then decreases as the day wears on. Parents should suspect their child may be having chronic pain if the child has had repeated bleeds into a joint (a target joint). And young people should be taught to distinguish between acute and chronic pain—not always easy to do. Often, when young people with hemophilia first experience chronic pain, they may believe the pain is due to a bleed, so they treat with factor—which doesn’t reduce chronic pain.
Chronic pain is managed differently than acute pain. It has a major psychological component, and can even cause physical changes in the brain. Chronic pain and depression are closely related, and can create a vicious cycle: the pain makes the depression worse, and the depression makes the pain worse. Some common symptoms of depression and chronic pain:
- Emotional symptoms: irritability, anxiety, excessive worry, crying, depressive style of thinking, and obsessions;
- Somatic symptoms: sleep and appetite disorders, reduced psychomotor efficiency (decreased coordination or dexterity) and life energy, impairment of concentration and attention;
- Feelings of guilt, sadness, loss of interest, and suicidal tendencies.
A good pain management plan for chronic pain must be personalized. It should use a multimodal or multidisciplinary approach. Along with using an effective analgesic, this multimodal approach should
- Address the psychological component of chronic pain, by treating depression and reducing anxiety and stress;
- Use adjuvant therapies, including antidepressants and anticonvulsants;
- Include an exercise and/or a physical therapy component;
- Use complementary and alternative medicine (CAM). (See YOU, p. 6, on CAM and its benefits.)
A multimodal approach will allow you to manage moderate to severe chronic pain with the lowest possible dose of analgesic.
This brings us to analgesics for chronic pain. Unlike acute pain, severe chronic pain often doesn’t respond to OTC analgesics. Even high-dose, prescription-only NSAIDs may not reduce the pain enough; and when used for extended periods, high-dose non-opioid analgesics pose a significant risk of bleeding complications and other serious side effects. So for moderate to severe chronic pain, stronger analgesics—opioids (narcotics such as morphine and codeine)—are the drugs of choice. Unlike NSAIDs, opioids have no ceiling dose. They don’t damage the kidneys or liver, don’t cause gastrointestinal bleeding, don’t increase the risk of heart attack, and don’t interfere with clotting by inhibiting platelet aggregation. Note that the long-term use of opioids for chronic pain management in children and adolescents is disputed, because opioids may harm their developing brains, and possibly may predispose them to later drug abuse.
But opioids do have multiple side effects: the most common is constipation, affecting 40% to 95% of people on opioids.5 Other possible side effects include nausea, dizziness, drowsiness, twitching, urinary retention, bladder spasm, sleep disturbances, itching, and respiratory depression (slow breathing rate). Some of these side effects may go away in a few days, and many people using opioids for long periods report becoming tolerized to these side effects—that is, the side effects disappear. The number and strength of the side effects you may experience are also related to the dose: the higher the dose, the more likely you’ll experience side effects or more serious side effects. Some side effects that don’t go away, such as constipation, can be treated with various medications. Constipation may require a change in diet and the use of stool softeners and stimulant laxatives.
The most serious—and potentially fatal—side effect of high-dose opioids is respiratory depression, sometimes to the point where breathing stops. The risk of severe respiratory depression is greater in the elderly and young children. That’s one reason opioids are rarely prescribed for young children. Death from respiratory depression due to opioid overdose often happens accidentally:
- An elderly person forgets they already took their opioid medication and takes another.
- Someone’s long-acting opioid doesn’t seem to be working, so they take another.
- • After previously taking a gabapentinoid medication (such as Neurontin®, Gralise®, Lyrica®) for pain or another indication, a patient decides to take an opioid drug during a spike in pain.
- While also taking an opioid, someone takes a cold or sleep medication.
- Someone takes an old high-dose opioid medication to which they were previously tolerized and have lost tolerance.
- A patient takes someone else’s opioid, which may be a high dose to which they are not tolerized.
- Someone decides to “self-medicate” with alcohol while taking an opioid.
All of these actions strongly increase the risk of severe respiratory depression, and possibly death.6 And all these examples are considered instances of opioid abuse. According to the National Institute on Drug Abuse (NIDA), more than 30% of overdoses involving opioids also involve benzodiazepines, a type of prescription sedative commonly prescribed for anxiety or insomnia.7 Benzodiazepines (or “benzos”) like diazepam (Valium®), alprazolam (Xanax®), and clonazepam (Klonopin®) work to calm or sedate a person. But using these benzos in combination with opioids increases the risk of severe respiratory depression. In 2016, the US Centers for Disease Control and Prevention (CDC) issued new guidelines for prescribing opioids, recommending that whenever possible, clinicians should avoid prescribing benzodiazepines together with opioids.8
Remember: No one has to die from an opioid overdose. Respiratory depression caused by an opioid can be reversed in minutes with a drug called naloxone. Naloxone is an opioid antagonist: it binds to the same nerve receptors as the opioid, displacing the opioid and temporarily undoing its harmful effects. Naloxone is available as OTC Narcan® Nasal Spray (the preferred form compared to the injected form) or as prescription-only naloxone auto-injector (Evzio®). Anyone on opioids, no matter the dose, should also receive a script for naloxone auto-injector or have Narcan on hand! Friends and family should be aware that you are taking an opioid, be taught the signs of severe respiratory depression, know where your naloxone is kept, and be trained in how to use it in an emergency.9 Note: Naloxone is only meant to be a first line of defense during an overdose, giving you time to get to a medical facility for treatment, because its antidote effect will wear off in 20 to 90 minutes. Both Narcan and Evzio come in two-packs, in case a single dose doesn’t work, or the person relapses on the way to the hospital.
Accidental death from respiratory depression by overdose of prescription opioids is easily preventable. Most of these deaths are the result of ignorance about the dangers of combining multiple drugs. And death from overdose in chronic pain patients is extremely rare. In one study of more than 2,182,374 patients prescribed opioids, the death rate from respiratory suppression was 0.022% per year.10
You may still worry about the risk of addiction or death from opioids. But remember, prescription opioids are safe and effective for treating moderate to severe chronic pain, when patients are pre-screened for addiction risks and the drugs are taken as directed.
Addiction, Tolerance, Dependency: What’s the Difference?
Most physicians have no worries about prescribing necessary pain meds for acute pain. But opioids are a different matter—they carry the stigma of addiction. Everyone has seen the portrayal of narcotics abuse in movies or on television. But most people don’t know that many of these media portrayals are inaccurate. In fact, misinformation about opioids abounds in the media and even medical journals. Both you and your physician might have fears, or outdated and incorrect information, about the risk of addiction.
Misunderstanding about opioids often centers on misunderstanding three terms:
- Physical dependence
Tolerance is a normal adaptive response to repeated exposure to a drug. The same dose of a drug becomes less effective over time; in other words, your body becomes desensitized to the drug’s effects. Tolerance can be both “good” and “bad.” If you become tolerized to some side effects of a drug, that’s good. If you become tolerized to the analgesic effects of a drug, that’s bad. Tolerance also develops at different rates for different effects of a drug. And the tolerance for a specific drug may vary between people; with other drugs someone is taking; and with underlying medical conditions. When a drug is stopped, tolerance decreases over days to months.11
Normally, opioids are first prescribed at the lowest possible effective dose. Then, if you become tolerized and the drug becomes less effective at reducing pain, the dose is increased to maintain effectiveness. This can be done several times, because unlike NSAIDs and acetaminophen, opioids have no ceiling dose. But if you continue developing tolerance to higher and higher doses, then your physician will need to switch you to another opioid.12 Why? Because high levels of opioids increase the risk of serious side effects like respiratory depression, and other side effects including drowsiness and tremors.
Note: A patient who is tolerized to an opioid may be taking a high dose that could be lethal to someone who is new to the drug. Never take another person’s prescription pain medication, and never give your prescription pain medication to anyone else! Always properly dispose of opioids you no longer need. This prevents diversion—stealing a drug for illicit use—and accidental overdose, which can happen if you were taking a high-dose opioid, stopped taking the drug and lost tolerance, then started taking the drug again.
Opioids can and should be used when needed.13 When taken as directed under good medical supervision, they can be effective, with limited addiction issues. Developing a tolerance to the narcotic is normal and does not indicate addiction.
Physical dependence is an “adaptive state” that develops from repeated drug use: your body has adapted to the drug, and now needs it to maintain normal function. So you have withdrawal symptoms when you stop taking the drug. For opioids, you may have withdrawal symptoms if you suddenly stop the drug, or if the dose is lowered too quickly. Symptoms of withdrawal may include sweating, rapid heart rate, nausea, diarrhea, and anxiety. Dependence and withdrawal symptoms are more pronounced the longer you’re on an opioid, and especially the higher the dose.14
Physical dependence is often confused with addiction, and in the media, the two terms may be used interchangeably. But dependence is not addiction. Physical dependence is considered a normal reaction to opioids and to many other drugs. For example, heavy coffee drinkers often become tolerized to the effects of caffeine, and become physically dependent. If they abruptly stop drinking coffee, they may have withdrawal symptoms for several days: headache, fatigue, low energy, irritability, anxiety, poor concentration, depressed mood, and tremors. Indeed, anyone on opioids for more than several days is usually considered dependent to some degree.
To minimize or avoid withdrawal symptoms, especially with a high dose, the dosage must be decreased slowly over time (days to months); this process is called tapering. The higher the dose and the longer you’ve taken opioids, the longer the tapering period needed. Never stop taking an opioid suddenly, and without medical advice. Going “cold turkey”—suddenly stopping a drug that causes dependency—may be life-threatening. Always consult your healthcare professional before stopping any opioid.
According to NIDA, addiction is a “chronic, relapsing disorder characterized by compulsive drug seeking, continued use despite harmful consequences, and long-lasting changes in the brain. It is considered both a complex brain disorder and a mental illness. Addiction is the most severe form of a full spectrum of substance use disorders, and is a medical illness caused by repeated misuse of a substance or substances.”15
Addiction is not a moral failing or character flaw, but a chronic illness that harms quality of life. Addiction often leads to weakening of interpersonal relationships, as well as withdrawal from work, family, or community. People may eventually appear to be in a state of persistent sedation or intoxication because they are overusing the drug. The addicted patient may also show psychological symptoms of addiction: increased irritability, anxiety, depression, and apathy. Addicts take drugs in spite of these consequences. Addiction is a long-lasting mental disorder, and an addict may relapse even after decades of being sober.
Overall, the risk of addiction to opioids is low for chronic pain patients, but it isn’t low for all patients: some patients are at higher risk of addiction. Before receiving a script for opioids, you should be screened by a healthcare professional, using an opioid risk tool, for depression, anxiety, and stress. You should also be screened for addictive tendencies (family or personal history of substance abuse, including alcohol, depression, sexual abuse, ADD, or OCD).16 Researchers believe there’s a strong hereditary component to addiction risk. If you’re at high risk for opioid abuse, you’ll probably be required to agree to close monitoring by your healthcare provider as part of your pain management plan. This may include regular urine drug tests, to identify and prevent drug abuse in its early stages.
Sometimes, what seems to be addiction may not be addiction. When pain is undertreated, a patient may show “drug-seeking” behaviors that look like signs of addiction. He may groan and moan, watch the clock, or ask repeatedly for medication before the prescribed dose is due. His complaints may seem excessive, given the cause of the pain. This behavior is called pseudoaddiction.
How can you tell the difference between pseudoaddiction and true addiction? In pseudoaddiction, the behavior disappears when the pain is adequately treated. But for people who are truly addicted to opioids, the behavior worsens when the drugs are administered. The “treatment” for pseudoaddiction is simple: treat the pain effectively. This means (1) assessing if the pain normally responds to opioids (some types of pain, such as neurogenic pain caused by nerve damage, don’t respond to analgesics); (2) checking the appropriateness of the opioid, dose, scheduling, and administration route (people with certain genetic mutations can’t metabolize some opioids to create the active compounds that give pain relief, so certain opioids won’t work for them); (3) if the pain responds to opioids, escalating the dose aggressively until the pain is relieved. These actions should eliminate pseudoaddictive behavior.
Good news is on the horizon. Researchers have identified several molecules with analgesic properties: they’re more powerful than morphine, and most important, they don’t have the side effects or addiction risk of opioids. These molecules include Astraea Therapeutics’ AT-121, already in testing with primates; Centrexion’s CNTX-0290; and Tulane’s ZH853.
Because most people with hemophilia will have to manage chronic pain later in life, it’s essential to understand the difference between tolerance, physical dependence, and addiction. Dependence and tolerance are not addiction! Opioid use does not automatically lead to addiction. Don’t let misinformation or fear prevent you from getting adequate pain treatment. Studies show that opioid addiction is uncommon among chronic pain sufferers, averaging around 8%. With proper screening for addiction risks and monitoring by your medical team, this risk can be lowered.17,18 Remember, good pain management is the key to taking any medication safely.
Managing Chronic Pain: The Multimodal Approach
Chronic pain management is an ongoing process that needs to be monitored and adjusted over time. Chronic pain is best managed by a combination of medication and non-medication treatments, with close attention to mental health. This multimodal approach allows you to manage pain with less medication.
You’ll need the expertise of specialists in pain management. If you’re lucky, your HTC will have a pain clinic with physicians who specialize in chronic pain management and can help you develop a personalized pain management plan.19 If not, you can request a referral to a pain clinic at a nearby teaching hospital. Unfortunately, many non-medication therapies for pain management are still not covered by all health plans. And many Americans—more than 28 million—don’t have health insurance and can’t meet with health professionals who can counsel them. Without health insurance, these people are left to self-medicate, and may turn to dangerous illicit drugs, contributing to the US opioid epidemic.
In the past few years, many pain patients have also met roadblocks because of the CDC’s “Guideline for Prescribing Opioids for Chronic Pain” (2016). Many health plans misinterpreted this guideline, and forced almost half of their high-dose opioid patients into withdrawal by suddenly cutting them off from their medication—sending many to emergency rooms.20 It took the US Food and Drug Administration (FDA) almost three years after the release of the CDC guideline to issue a warning that suddenly stopping opioids can be risky for patients. Disturbingly, studies showed that the risk of death from opioids tripled after pain patients were denied their opioids, possibly because they sought relief from dangerous illicit opioids.21 In response to these studies, in 2019 the CDC issued a statement against misapplying its guideline.22
As mentioned earlier, a good plan for managing chronic pain must be personalized, and should use a multimodal approach to help manage moderate to severe chronic pain with the lowest possible dose of analgesic. Along with using an effective analgesic, a multimodal plan should
- Address the psychological component of chronic pain by treating depression and reducing anxiety and stress, for example through stress management training.
- Use adjuvant therapies.
- Include exercise and/or physical therapy.
- Use CAM techniques including therapies, biofeedback training, and behavior modification.
The US Opioid Epidemic
A quote attributed to Mark Twain, “There are three kinds of lies: lies, damn lies, and statistics,” applies to data in the media about opioid deaths. Data on opioid deaths is sensationalized—even by government agencies. Problems with data are common. For example, any death involving someone with opioids in their system, no matter how little, is listed in the National Vital Statistics System (NVSS) as being an “opioid overdose.” But this is an association, not a causation (see Insights), and the death may have had nothing to do with opioids.
The number of deaths in the NVSS is also exaggerated because deaths are listed by type of opioid; so people with more than one opioid in their system are listed as dying multiple times—once for each opioid! For example, NIDA listed about 63,000 deaths involving opioids in 2017, when the actual number of deaths was about 49,000.
For users of prescription opioids, the risk of opioid overdose is also inflated because deaths from illicit opioids and prescription opioids are not separated; this makes using prescription opioids for chronic pain therapy seem much riskier that it really is. For example, all deaths involving fentanyl (a very potent opioid often named in overdose deaths) were listed in NVSS as being caused by prescription opioids. But in fact, most of these deaths were from illicit heroin and fentanyl, not from pharmaceutically manufactured fentanyl used in prescriptions. Of the 45,495 opioid-related deaths in 2016, 17,029 were related to prescription opioids. There is also no breakdown of the data on what percentage of prescription opioids were diverted—stolen and used illicitly by someone other than the prescribed person. In other words, deaths of illicit drug users using diverted opioids are lumped together with those of chronic pain patients, inflating the risk to chronic pain patients.
Death from opioid overdose is a US national health problem—but it’s significantly smaller than what’s portrayed in the media and by some government agencies. It’s mainly a problem of illicit drug users, not people responsibly using prescription opioids for chronic pain. While deaths from using prescription opioids continue to decrease each year, deaths from illicit opioids continue to increase. One model projects that, of the opioid deaths in 2025, as much as 86% will be caused by illicit opioids.23
Unfortunately, in recent years, many of the efforts to reduce opioid deaths have focused on chronic pain patients, rather than on users of illicit drugs. Federal and state laws and guidelines have moved to restrict access to opioids for people in need. Many pain patients, misled by sensational news on the opioid epidemic, are afraid to use opioids, fearing they’ll automatically become addicted. And doctors—under great pressure by health plans and state or federal authorities to reduce opioid use—may be overly cautious or afraid to prescribe opioids. Left to suffer are people with chronic pain, who are often stigmatized, not only by the general public, but sometimes by the healthcare professionals who should provide help and relief from pain.
You don’t have to suffer pain every day. If pain affects your quality of life, causes depression, prevents you from sleeping through the night, or stops you from daily activities, then consult with a pain specialist to develop a plan to get your pain under control and your life back on track.
1. Common medicines containing acetaminophen: www.knowyourdose.org/common-medicines
2. Historically, the maximum daily adult dose of acetaminophen was 4 g. In response to overdose deaths, in 2012 the FDA suggested, but did not mandate, a maximum daily dose for adults of 3 g, with no more than 650 mg every 6 hours, as needed.
3. Although most aspirin-related compounds containing salicylic acid also affect platelet aggregation, two do not: salsalate (Disalcid®) and choline magnesium trisalicylate (Trilisate®). These drugs are sometime prescribed for children with hemophilia.
4. MASAC recommendation 162, “Use of COX-2 Inhibitors in Persons with Bleeding Disorders,” www.hemophilia.org.
5. O. B. Woodward, S. Naraen, and A. Naraen, “Opioid-Induced Myoclonus and Hyperalgesia Following a Short Course of Low-Dose Oral Morphine,” British Journal of Pain 11, no. 1 (2017): 32–35.
6. The CDC and NHF suggest that physicians prescribe short-acting/immediate-release opioids instead of long-acting/extended-release opioids. MASAC recommendation 260, “Management of Chronic Pain in Persons with Bleeding Disorders: Guidance for Practical Application of the Centers for Disease Control’s Opioid Prescribing Guidelines,” www.hemophilia.org (search: 260_pain).
7. “The Science of Drug Use and Addiction: The Basics,” www.drugabuse.gov.
8. Deborah Dowell, Tamara Haegerich, and Roger Chou, “CDC Guideline for Prescribing Opioids for Chronic Pain—United States, 2016,” Morbidity and Mortality Weekly Report Recommendations and Reports 65, no. RR-1 (2016): 1–49.
9. Many people using prescription opioids believe that an overdose will never happen to them—but it can happen accidentally to anyone. The word “overdose” can sound negative. If you’re concerned about others making judgements, try using a term like “opioid emergency” instead of overdose. And wear a medical ID.
10. N. Dasgupta, et al., “Cohort Study of the Impact of High-Dose Opioid Analgesics on Overdose Mortality,” Pain Medicine 17, no. 1 (2016): 85–98.
11. “Former Opioid Users Are at a Greater Risk of Overdosing Than the Newly Addicted,” blog post, Jackson Laboratory, www.jax.org.
12. Opioids affect one or more of three major nerve receptors; switching to an opioid that uses a different receptor will allow you to use a lower dose.
13. Special precautions are needed for children and adolescents, and if opioids are necessary, they should be used at the lowest effective dose for a short time only (a few days). The brains of children and adolescents are still developing, and are more “plastic” than those of adults, making young people more susceptible to permanent changes as a result of taking an opioid.
14. Morphine milligram equivalents (MME) is an opioid dosage’s equivalency (potency) as compared to morphine. The MME/day metric is often used to gauge the overdose potential of the amount of opioid given at a particular time. Before the2016 CDC opioid guideline, a “high dose” was defined as greater than 120 MME/day. It’s now usually defined as greater than 90 MME/day.
16. “NIDA Screening and Assessment Tools Chart,” www.drugabuse.gov.
17. N. D. Volkow and A. T. McLellan, “Opioid Abuse in Chronic Pain—Misconceptions and Mitigation Strategies,” New England Journal of Medicine 374, no. 13 (2016): 1253–63.
18. David A. Fishbain, Cole Brandly, et al., “What Percentage of Chronic Nonmalignant Pain Patients Exposed to Chronic Opioid Analgesic Therapy Develop Abuse/Addiction and/or Aberrant Drug-Related Behaviors? A Structured Evidence-Based Review,” Pain Medicine 9, no. 4 (May–June 2008): 444–59.
19. In a study of more than 1,000 people with hemophilia, only 7% were seen by a pain clinic for pain management. Michelle Witkop, Angela Lambing, et al., “A National Study of Pain in the Bleeding Disorders Community: A Description of Haemophilia Pain,” Haemophilia 18 (2011).
20. T. L. Mark and W. Parish, “Opioid Medication Discontinuation and Risk of Adverse Opioid-Related Health Care Events,” Journal of Substance Abuse Treatment 103 (2019): 58–63.
21. J. R. James, J. M. Scott, J. W. Klein, et al., “Mortality After Discontinuation of Primary Care–Based Chronic Opioid Therapy for Pain: A Retrospective Cohort Study,” Journal of General Internal Medicine 34 (2019): 2749–55.
22. “CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain,” www.cdc.gov.
23. Michael Devitt, “Research Shows Nation’s Opioid Epidemic Is Far from Over More Comprehensive Approach Is Needed to Reduce Opioid Use, Deaths,” American Family Physician Feb. 20, 2019, www.aafp.org.
Source: PEN, ©LA Kelley Communications, Inc.