My doctor says they have to lower my long-term opioid medicine. “What can I do? What do I say?”

A guide for patients & families

(if you have feedback, positive or negative, please offer it in the comments below)

Advisory:

Please note: this page offers general guidance for people concerned about proposed opioid dose reductions or loss of access to a prescriber. It does not offer personal medical advice. Please speak with your own health care providers, and the people you personally trust for insight and guidance. If you lost your prescriber and have no doctor, it may be more helpful to look at items 12–14 below. This page does not provide support for people feeling suicidal. The US Suicide and Crisis Lifeline is here, and can be reached by dialing 988.

Also, this page represents my personal views. I’m Dr. Stefan Kertesz, a primary care doctor, primary care researcher, and advocate on issues related to chronic pain. Nothing on this page represents formal positions or views of the University of Alabama at Birmingham or the US Department of Veterans Affairs, although I am employed by both. Individuals may wish to review my scholarly work on homelessness, pain, addiction and service for vulnerable populations here.

Have you you have lost someone to suicide after prescription opioid stoppage or reduction? Please check our research study, CSI:OPIOIDS. The CSI:OPIOIDs study is for individuals who believe they lost a family members or close friend to suicide following a change in opioid dosage. Persons who believe this happened can enter, even if they are not 100% sure. Follow-up questions will help you to explain if you are certain.

1. I am being told my opioid pain medication must be reduced. Why is this happening?

Prescribers reduce or stop opioids for many reasons. Ideally, this decision should only happen based on an individualized assessment of your health, well-being and safety. For example, some prescribers may assess that an opioid prescription is doing you more harm than good. Many patients on long term opioids feel ambivalent about these medicines and may consider reduction. In these situations, sometimes, a dose reduction can be helpful, but sometimes it will not be helpful. The evidence is mixed.

Separately, in my experience as a prescriber, it may happen that a patient’s actions make it difficult to continue a medication without the prescriber risking regulatory trouble. For example, if my patient does not come for appointments, it’s hard for me to continue the prescription, because I can’t assess and document any benefits or harms resulting from that prescription.

I have just described reasons that would be specific to a particular patient. However, I have observed that these individualized decisions are less common. Well-conducted research, news reports, and government declarations, show that prescribers are cutting opioid prescriptions across the board in ways that are neither individualized nor careful.

The reasons for this change in practice would take a book to describe. However, I will summarize (people seeking a policy analysis, check my scholarly article here).

Some health care organizations, payers, and prescribers incentivize opioid dose reduction across-the-board on the premise that lowering doses makes patients safer.

Others say that they are reacting to pressures from regulators, payors, distributors, employers, licensing boards, or law enforcement, and these entities often declare or tacitly acknowledge that individual patients’ safety is not a primary consideration.

Finally, a patient can lose access to opioid medicine if their prescriber moves away, retires, or loses his or her prescribing authority. Sometimes, patients receive a letter explaining the change, but not routinely.

All too often, it is difficult to tell why a prescriber is making a decision. In general, it is helpful to seek a conversation with the prescriber to learn if they can describe their plan, even if you don’t agree with what they say to you.

2. Are there potential benefits from a dose reduction, if I have been on opioids for a long time?

My colleague Dr. Allyson Varley and I have summarized the literature as follows: “Our view is that opioid dose reduction is likely to offer benefit for some, while harming others.” Here, I note potential benefits some patients may experience:

• Lessened dependence on medication, which may, for some patients, reduce the potential for overdose, sedation, or other side effects
• Less medication to manage, which can lead to less friction or stress with insurers, pharmacies or others involved in their care
• Improvements in sleep, mood stability, alertness. Research evidence on these improvements is limited, as of 2023
• In some studies, the most common outcome for the patient’s pain is that it is not worse. Some patients wind up having less pain. Or they improve in their functioning even if they rate their pain to be the same. Improvements of this nature are not guaranteed, in the studies to date.
• From my experience and discussion with experts, good outcomes are a bit more likely if two conditions are met. First, the clinical team has collaboratively re-evaluated the situation with the patient and offered a new, serious plan for pain rehabilitation. Second, dose reduction is developed in a way that maximizes the patient’s sense of control and agency. Any treatment change that triggers fear or alarm is going to make it hard for pain or functioning to improve.
• I have laid out some potential benefits. There is an observational study showing a reduction in certain kinds of accidents, injuries or problems with drug and alcohol after dose reduction, and another that did find a reduction in overdose, although not all studies agree.

3. What are the risks of prescription opioid dose reduction in patients who have been taking opioids a long time?

None of these adverse outcomes happen to all patients who undergo reductions. However, risks seem to be higher for those patients already on the highest doses, or on opioids for the longest time. Findings described in research studies or in multiple cases I have observed include the following

• An increased likelihood of mental health crisis, such as suicidal ideation, attempt or death by suicide
• An increased likelihood of initiating new substances like heroin, or overdose with opioids, either illicit or prescribed
• Increased pain, for a significant number of patients
• Elevations in blood pressure and/or a type of heart failure called “Takotsubo cardiomyopathy”
• Destabilization for conditions like hypertension, diabetes, based on diminished capacity to manage daily obligations
• Withdrawal from social or work activities
• Deterioration of health care relationships or loss of health care continuity.

Some experts argue that these poor outcomes are prevented if the dose reduction is slow, as this tends to reduce acute withdrawal. Unfortunately, research conducted to date fails to support this argument.

4. Does the 2022 opioid guideline from the Centers for Disease Control and Prevention support tapering? Did the 2016 Guideline support that?

Neither the original CDC Guideline for Prescribing Opioids for Chronic pain, nor the updated version released in 2022 endorsed across-the-board dose reductions as appropriate, even though many (including the CDC) have reported that the 2016 Guideline had that effect.

Specifically, the 2016 Guideline urged prescribers “avoid” prescribing doses over the equivalent of 90 milligrams of morphine or to “carefully justify a decision” to do so.

Clinicians should use caution when prescribing opioids at any dosage, should carefully reassess evidence of individual benefits and risks when considering increasing dosage to ≥50 morphine milligram equivalents (MME)/day, and should avoid increasing dosage to ≥90 MME/day or carefully justify a decision to titrate dosage to ≥90 MME/day (CDC, 2016)

Also, in the 2016 Guideline, for patients already receiving long-term opioids, the 7th recommendation urged a careful evaluation of benefits and harms of said regimen prior to any change:

Clinicians should evaluate benefits and harms of continued therapy with patients every 3 months or more frequently. If benefits do not outweigh harms of continued opioid therapy, clinicians should optimize other therapies and work with patients to taper opioids to lower dosages or to taper and discontinue opioids (CDC, 2016)

Unfortunately, many government agencies, including the Drug Enforcement Agency and the Department of Justice, utilized these same CDC-endorsed dose caution points in ways that treat all regimens over 90 milligrams as inappropriate, routinely omitting language indicating that a physician might “carefully justify” exceeding 90 MME, and ignoring palliative care altogether.

The CDC itself denounced this “misapplication” of its Guideline in 2019, and it denounced it again in its updated Guideline of 2022.

Of particular concern, some policies purportedly drawn from the 2016 CDC Opioid Prescribing Guideline have been notably inconsistent with it and have gone well beyond its clinical recommendations. Such misapplication includes extension to patient populations not covered in the 2016 CDC Opioid Prescribing Guideline (e.g., cancer and palliative care patients), rapid opioid tapers and abrupt discontinuation without collaboration with patients, rigid application of opioid dosage thresholds, application of the guideline’s recommendations for opioid use for pain to medications for opioid use disorder treatment (previously referred to as medication assisted treatment), duration limits by insurers and pharmacies, and patient dismissal and abandonment. These actions are not consistent with the 2016 CDC Opioid Prescribing Guideline and have contributed to patient harm (CDC, 2022)

5. Should I try to persuade my doctor that their dose reduction is wrong for me?

Patients should always feel free to declare any concern they have about their care (and, if they are disabled in any way, to have others help them do so). And yet, I have noticed that when the topic is controlled substances, doctors often do not respond with an open mind, or even with courtesy. Frequently, they elect not to respond at all.

A colleague and I offer a podcast on this problem. Serious conversations about health care require fundamental mutual respect between doctor and patient, who see each other as equal human beings

6. How can a patient and friends or family prepare for a conversation with a prescriber?

I lay out some key steps in the bullets below. These may help make a conversation more effective. I cannot guarantee these steps will succeed and not all are consistently necessary. Use your judgment.

• Contact the doctor’s office to request a visit to discuss the plan (see graphic). A request is more likely to get a response if it is simple, brief, and non-threatening. If you don’t get a response in a few days, repeat it. If no one responds to an online message, call the office to verify the message was received. If no one responds to your call in 2 days, call again, but keep it simple.
• If you schedule a conversation, you likely will be required to visit the office. Either you or your insurer will likely be charged for the visit.
• The conversation will be better if you are prepared. Try to write down a list of the diagnoses or conditions that have been part of your pain care. Write down the medicines you have been on. You may need to go through old notes, speak to the pharmacy or your doctor’s office. It is worth knowing how long you have been receiving opioid pain medication, and what your highest dose was. There are online calculators that allow you to compute your dose in a common unit: morphine milligram equivalents (MME’s). It will be helpful if you know whether your current dose is your highest ever, or if you are already down from that.
• As you prepare, take a few notes on whether you have seen any evidence of benefit or harm from opioid pain medicine. I am not suggesting that you present a written report of these matters right off the bat. But it is good to be prepared to offer such a report, depending on how the conversation goes.
• It’s worth trying to learn if there are policies from your state’s medical board, Medicaid, or your insurer that impose specific dose limits and what exceptions may apply to your care (ask!). Often the rules do not require dose reductions. But these rules tend to change. As a starting point I suggest attempting to find the website for your state medical board (or just call the Board staff). Some rules are compiled here and here, but both lists are a bit out of date.
• Prepare your questions and concerns in writing so that you don’t forget them. I suggest a short opening question to start the discussion to increase the chance of an honest response (see graphic)

• There are 2 key points about this question. First, I have avoided the phrase “why are you…?” That’s intentional. “Why are you…?” makes people defensive. Second, “the right thing for my health” is also intentional. It’s meant to focus what comes next on you, the patient, not the prescriber. If the first response you hear doesn’t address your health, it is easier to follow up, as in “doctor I was not asking why you feel pressured to do something but rather what you understand to be protective of my health.”
• It is, I admit, ridiculous that patients and families have to engineer the words to prevent unproductive conversations with prescribers. However, over the last five years, I have received many letters from patients and reviewed many medical records that have shown me that unproductive conversations are the norm.

7. Plan to take notes

For this conversation, take notes if you can. If a friend or family comes to the appointment, they might be enlisted. If the doctor seems uncomfortable with notes, one might say “I hope you don’t mind. I just want to be able to study this later and make sure I understand”. Saying these words conveys respect, and it sends a signal: the conversation is serious. I believe that you should ask permission if you wish to audio-record the conversation. It is often intimidating to doctors, but it may be necessary, particularly if you have no one to help you with the notes.

8. The prescriber refuses to say a reason for the dose reduction

Many patients tell me that they can’t really get a coherent explanation from their prescriber. The prescriber may mention law enforcement or the CDC in a general way. Generalizations are sometimes helpful. But ultimately, any professional- whether a physician or a lawyer- must explain what specifically applies to you. You can respond by saying your concern is your health, or that of your loved one.

If the prescriber responds with specifics, then I encourage you to listen. The prescriber may see things about your health that matter. Once, I had a patient who was very sleepy due to receiving too much medicine. At first, she did not appreciate when I told her that her medicines were putting her at risk, but later she did.

On the other hand, your prescriber may state actual errors. It’s also helpful to ask for clarification. If they err, don’t escalate. Just say, “I think I need to clarify some information because what you said seems different from what I’ve read.”

9. The prescriber insists they are responding to external pressure, and that the decision is not about the patient

Sometimes a prescriber will blame an external party for the decisions they make. They might say that the DEA, or their attorneys, or the medical board, or an insurer has mandated the changes they are making. Often these declarations are partly true. Any time a prescriber mentions a policy, a letter, or a notification, it’s reasonable to ask if they can share a copy with you, or give you the relevant website. In my experience, prescribers often have no documents to share, in part because whatever pressure they are under is not coming from a single source.

If the prescriber declares that their decision is not based on your health or safety, but on external party pressure, express sympathy, and then ask them to document that in your medical record.

Then, if you choose to seek care elsewhere, your medical record is transparent and shows that the dose reduction wasn’t based on you, but the prescriber’s reactions to the policy environment.

When prescribers say “I have no choice, sorry”, this is what we call an “impasse” in care. You often cannot overcome it. So I have taken some time to write out phrases that might induce the prescriber to write all this down in a way that protects the patient. Here are some ideas:

• Sympathy: “wow, it sounds like a lot of pressure on you”
• Restatement: “okay just to make sure I have this correct, you are not reducing doses because of anything about my condition that you saw. But you felt that you must do this because… (state back what the doctor said).. do I have it right?”
• Concern: “what you just said could matter in the future for my care so I would like that documented in the chart. Are you comfortable writing that down so it’s clear?”

10. I want to argue that they are making the wrong decision. What do I say?

In my experience, some clinicians are open to learning from their patients and others are not.

If you decide to make an argument, I would start by introducing what’s coming. “I hear exactly what you are saying. I would like a moment to share my concerns about this decision”. It’s a respectful gesture.

At this point in time I don’t have evidence that one approach to this conversation is better than any other. Consider what follows a menu of options, and then use your best judgment.

• “The Centers for Disease Control and Prevention issued a new Guideline on opioid prescribing at the end of 2022. The CDC says that some patients do tolerate dose reductions. But they also cite several studies suggesting there is also a risk to patient safety. I’m worried that I’m at risk of experiencing what the CDC has said could happen. Can we take some time to utilize this Guideline?”
• “Most changes to care involve informed consent, particularly if there is risk. Can I ask you to look at a short article from JAMA Network Open on why informed consent is important here?”
• “I hear you saying why this could be helpful, and honestly it might be, but the last time we attempted a reduction it went poorly, and (state what happened here), and I want you to know that”

Finally, I have noticed a website developed by people at the San Francisco Department of Public Health to assist prescribers who are “inheriting” a patient on long-term opioids from another prescriber. The website team is very aware of the current literature, and they are cautious in their advice. If you are an inherited patient, it’s very reasonable to ask if the prescriber can defer a decision until you both have a chance to look at this important guidance.

11. The reduction is going to happen. I am ambivalent but I’m going to stay with this prescriber. What should I ask?

My colleague Dr. Varley and I propose in a 2022 paper that sometimes prescribers may judge they have to reduce doses, even if the patient has not consented. In that article we laid out conditions the prescribers must meet if they are to take that course of action.

Here, I adapt what we wrote. These are just suggestions. I do not have evidence that these questions will always elicit a positive or helpful response. If you try them out and find they are helpful or harmful, please let me know by email.

• What will be the plan for my pain care going forward? Are there other services or experts we can get to help?
• Since the Food and Drug Administration has reported evidence of harm for some patients after reduction, what’s our plan to mitigate that risk
• What criteria will you use to determine if the dose reduction is successful or failing in my care? Can you document these in the chart so we are both protected down the line?
• If we come to the conclusion that the dose reduction is not helping me, or has hurt me, do you believe you can reverse it?

12. Should I consider buprenorphine formulations approved by the FDA for pain?

Your doctor may or may not offer to switch your traditional opioid medication to buprenorphine, but it may be an option.

Buprenorphine is an opioid and it has some evidence to its favor for pain, including chronic pain, on average.

The Food and Drug Administration has approved two formulations (a patch, and a patch that is put inside the cheek to dissolve) for care of pain.

Buprenorphine is less likely to cause overdose because it binds to the brain receptors fully, but only “partially activates” them. The total amount of evidence regarding buprenorphine for chronic pain remains limited.

If buprenorphine proves helpful, it may be more convenient. This is because buprenorphine is a medicine where doctors can include refills on the prescription.

One small follow-up study of people who switched from regular opioids to buprenorphine found that about half the patients found their pain was lower after making the switch.

From my experience, buprenorphine is a helpful idea for patients who are showing behaviors that raise my level of concern for overdose or mismanagement of the medicine. To date, I have not seen evidence to support switching all patients to buprenorphine as a general policy.

13. Should I consider buprenorphine formulations normally used for addiction/OUD?

The Food and Drug Administration has approved certain forms of buprenorphine/naloxone for treating addiction (e.g. “opioid use disorder”). These forms are either dissolved under the tongue, or received as an injection monthly or every 3 months. If a doctor prescribes this medicine for pain, and not for opioid use disorder, it’s called “off label prescribing” and this practice is legal.

Any prescriber with a DEA certificate is permitted to prescribe these forms of buprenorphine, but not all are familiar with this medicine. An online search tool is available.

There are some reasons to consider these “OUD” forms of buprenorphine/naloxone.

One is the price. In March of 2023, the price for 30 dissolvable buprenorphine/naloxone strips ranged from $77 to $97, which might be a one-month supply. By contrast, the price for 60 buprenorphine cheek films (approved for pain) was $422.

Another reason to consider it is that there is the potential to obtain a higher dose of buprenorphine this way.

On the other hand, there are also arguments against using the forms of buprenorphine/naloxone approved for addiction in pain. First, in order to get insurance to pay for it, the doctor may be required to write an addiction-related diagnosis into your medical record. In this case the doctor is writing something that could be false and stigmatizing into the record. You and your prescriber need to discuss that carefully.

14. Should I go to a local “methadone program”?

The formal name for “methadone programs” is “Opioid Treatment Programs”, and they are specific to the United States. These are independent organizations licensed to offer opioid addiction treatment with methadone. Going to a methadone program is not always an option, and it is not typically a first choice.

However, one reason to consider it, is as follows: when a patient has their opioids cut off, that person is usually going to be in serious distress. If the patient assesses they are at risk of medical or serious emotional complications, then they could consider contacting a local methadone program. Not all methadone programs accept pain patients. However, many methadone programs have agreed to receive patients with pain who have been abandoned. And the doses of methadone permitted in these programs are often quite high.

The challenge with methadone programs is that they do cost money, though some insurance plans cover the cost. They also require following many rules. You may have to present to the program every day for a period of time and take the methadone under the supervision of their staff. Some clinics insist on someone watching you collect a urine specimen, and this can feel pretty embarrassing.

If you decide to take this approach, you need to call the programs in the area where you live. A directory to find them is online. It’s crucial to speak to the programs in advance because sometimes they are full and unable to take new patients.

15. I know someone who might take their own life, or I might take my own life.

One of the reasons I have dedicated much of my work to this issue since 2016 is because of the suicides and near-suicides that come to my attention. I spoke out to condemn the incautious changes to care, in writing, on the radio, and in this 2019 TEDx talk.

I wrote this page in part because I know that I can’t personally stop each suicide. However, I want people to consider all the suggestions above.

If you or someone you know is at risk of suicide, consider using the national 988 Suicide and Crisis Lifeline. It can be reached by dialing “988”, and the website offers other ways of contact.

16. I’m upset by how patients with pain are treated and I want to take action.

This page offers general guidance for people in what can be a difficult situation. If you wish to consider public advocacy, please take a look at the website for the National Pain Advocacy Center (that’s “NationalPain-dot-org”).

Have you you have lost someone to suicide after prescription opioid stoppage or reduction? Please check our research study, CSI:OPIOIDS-V. This study is for close family members or friends. There is a preliminary survey for persons who might be interested here.