Stanford Opioid Tapering Study Causes Reaction

Stanford Opioid Tapering Study Causes Reaction

By Ed Coghlan.

The recent National Pain Report article on a pilot study on voluntary opioid tapering prompted a response from our readers.

The article—which was mostly a transcribed interview with Stanford pain psychologist and study co-author Dr. Beth Darnall—focused on four main points she made which she reinforced in a Twitter Tweet on the topic over the weekend.

Forced tapers fail.

Many patients want to reduce their does but don’t know and fear greater pain.

The goal was to test a compassionate, patient-centered taper method for those who WANTED to try.

The study is not for everyone.

“We believe we can help many patients reduce their health risks (and not increase pain) without forcing them to do anything. We are testing this in our PCORI funded 4 state patient-centered clinical trial,” she said.

The reaction among our readers was mixed. For some, this study was seen as a threat to their opioid prescriptions and future access to the medicine.

A reader who identified himself only as Marco submitted comments that resonated with some:

“If my choice is between addiction to opioids or addiction to pain, I will take the opioids anytime because they allow me to walk around, do chores, play music, watch a movie. Live life,” he wrote.

Reader Tim Mason didn’t like we covered the story at all.

“This is starting to sound more like an addiction blog. We are not addicts.”

(Editor’s Note—We are going to keep covering these studies, Tim)

For a reader who identified herself as Maureen M, she saw the study as an important step in better understanding the issue

“Dr. Darnall, thank you! ever so much for taking real interest in finding a way to truly help our community. I wish you the best! Please keep us informed!”

“Cynthia” also applauded the effort:

“There should be a lot more studies like this. Pain is way understudied and researched. Hardly anything is known about it.”

“Lori” summed up the feeling of many of our readers, and for that matter, the feeling of many people who have chronic pain and treat chronic pain.

“The whole opioid crisis has had a very profound negative impact on many chronic pain patients. People have been afraid that their meds will be restricted or cut-off altogether, without anyone asking them how their symptoms are. I think we may be on to something here if the government keeps their nose out of the doctor/patient relationship.”

On a personal note, we have long appreciated Dr. Darnall’s availability and willingness to discuss her work. We will continue to amplify it—and other research work—which is important to the future of how chronic pain is treated so that our readers can be informed about issues that matter to them.

 

Authored by: Ed Coghlan

24
Leave a Reply

2500
24 Comment threads
0 Thread replies
4 Followers
 
Most reacted comment
Hottest comment thread
23 Comment authors
  Subscribe  
newest oldest
Notify of
Jul

Another study, more smoke and mirrors draping a veil over what the government is using to keep us (those who use prescribed opiate meds to modify chronic pain issues) confused, upset and SCARED.
It’s the FEAR technique.
My take on this [edit] is a specific cohort of persons between 40 and 65…baby boomers…are cohesively being taken out. I am one of that fits
the profile.
Yes, genocide.
Basically every person who is in chronic pain, managed well with opiated medications and falls within the parameters stated above is going to become like Sysyphus but we have done nothing to be punished for.
I can not think of any logical reason for all of this cabal over a medication which for centuries has HELPED with pain management.
It is just so ironic that the government and other in- line agencies are using street opiates, usually illegal, to champion their mission.
I hurt; I’m tired but I”m not afraid…the best to all afflicted with this nightmare.

Jenifer Markoe

My doctor cut my medication by a 1/3. She offered to keep prescribing until I found a pain doctor. I decided with the cuts as long as she did it slowly. Well it took a year with no extra pain (until the very last dose cut) and no withdrawal. The way doctors are cutting patient is unexcusable because most of the time they do way to fast. In Fact the Va had me on 3 100mg of morphine and wanted to drop me to 60mg in 10 days. I have not used the VA since even though I am a 100% service connected Veteran. The key is about doctor patient relationship which is mostly ruined now. Most cannot get chronic pain patient out the door and some GP will not treat the other problem a chronic pain patient may have like high blood pressure). Now Medicare is going to allow part D insurance companies to decide if a patient should get over 90mme a day. That is insane since they know nothing about your condition because they do not get your medical record because they just deal with paying for medications. It is bad enough the only NSAID I can take about once a day is no longer paid for and I get to pay $4000.00 a year to pay for out of pocket instead (Celebrex). Now they also want to do the same with Gabapentin and other medications also that chronic patient need. What I dont understand for 2 epidurals that never worked 2 years of opiates could be paid for at 25% less cost.

Alice

I read several posts where chronic pain sufferers blame their doctor for cutting the meds back. It’s not the doctors who are doing this it is our federal government. My pm Doc has ignored the new regulations as long as he could but it’s happening now, and clinics not in compliance by July 1 will likely be closed down. Even if you’ve already had your dose reduced you should wean to as little as possible bc I’m told it’s going to get worse. This is an insane government experiment that will go horribly wrong like all the other times our government tried to play doctor. Ppl will read about us fifty years from now. About the living hell decent ppl with terrible medical issues were denied their medications. I’m planning my way out now. I can’t live in 24/7 intractable pain.

Teresa

I just went to my pain management doctor yesterday, and was told because of our government I will not be able to receive my medication to help me with my back pain.

I have went through the series of epidural shots twice now, and the second time was because the doctor did not believe in opioids and said this should help. Well it did not help at all so at least the doctor gets paid and the clinic will also get paid.

Now I am wondering what I should do? My oxycodone has helped me so much to be able to move, to clean the house, to enjoy traveling and my grandchildren.

I live in Illinois and in today’s paper I read where a family is going to sue the pharmaceutical companies because their grandchild was born with an addition to opioids because the mother was addicted.

What is happening to America where the government has so much say so in our lives on everything!!!.

Just frustrated with all of this. With the attitude that if you ask what is next, that can help you, it is like they just say well we can give you more back injections.

Robert

Dear God not another one! Another commercial directed to both chronic pain patients and street addicts for drug rehabilitation. In big glowing letters “Methadone” as they say we treat with Methadone and Suboxone.

I am going to SCREAM! This is the business of current healthcare. Healthcare, an oxymoron. My sincere and highest recognition to those Physicians and members of the medical community who against all opposition and certainly popular opinion, stand up gallantly against the armies of pure evil. Condemnation for those who bury their heads in sand.

No one with a stitch of common sense, let alone a medical degree can possibly agree with the continued war against Millions of American citizens who are being targeted by our own government. A sentence of never ending torture, suicide or the slow attenuation to death as our bodies give out to the never ending pain which each of us suffer. THIS CANNOT BE MY COUNTRY.

A country that offers more compassion to animals than to human beings. A country that cares more for mistreated cats and dogs than for people. Each and every story seen on television or heard on radio tells the story of the teenage child who died from a Heroin overdose and places the mantel of responsibility squarely on Doctors who supposedly write Opiote/Opioid prescriptions like their giving away candy on Halloween. Not one single story that tells of a returning Vet who suffered incredible bodily damage while defending our country only to be discarded as one would discard trash.

When we read stories of fellow pain soldiers who are forced to travel to other States after seeking out dozens of Physicians in their home State that slam the door in their face. When their present Doctor who justifiably gave them proper care for years suddenly forgets their name, I ask “What country are we living in?” It cannot be the United States of America that I once knew. The country that I supported in youth by saying the Pledge of Allegiance everyday. The country I served in uniform. A country that fought for the freedom of others that now willingly, knowingly can deliberately destroy the lives of millions of it’s own.

Common knowledge tells us that prescriptions are radically down since 2016, yet overdose deaths are radically up and Mexican cartels and China are the cause. Is this not undisputed? Yet whether Republican or Democrat, Conservative or Liberal, MSNBC or FOX news continue to spew the same propaganda.

Marty

Everyone needs to send their story to the president and remind him that we are suffering unnecessarily. We are the taxpayers, we are the voters and we are 100 million strong!! We are not the heroin addicts, pushers or dealers none of which vote! I have written everyone I can think of and I will continue until the government gets out of the medical profession. I am still looking for an attorney that will join our fight and send notices of Intent to Sue the CDC, FDA, DEA, and doctors who swore an Hippocratic Oath, medical board and anyone else making us suffer preventable pain! Yes, I’m mad and yes I’m suffering. I will fight this as long as I’m able……

Holly

I thought I had an awesome Pain management Dr. When my sister died 1 and 1/2 years ago she hugged me and let me cry. I was so moved that I sent her a thank you card. It hurts my heart so bad that now she could care less about my pain. I have been cut back a lot with more to come. I have pleaded and begged. She says it’s for my safety. She also says it’s so she can sleep better at night. Forced tapers do not work! My recliner is my world now.

connie small

I am in the process of rotating from Oxycontin to Fentanyl. I have become tolerant to the oxycontin. I am hoping that the Fentanyl patch can cover my pain better. I have gone through three months of hell with withdrawal and pain during the switch. The doctors were very conservative about the amount of Fentanyl they gave me the first few weeks and as a result I was in terrible shape. No sleep and lots and lots of horrible, burning pain.
So now I feel that I must go up on my Fentanyl because I experience strong break throughs every day. I could never go down on my medication. My Interstitial Cystitis is end stage and I am not a good candidate for bladder removal according to my urologist.

The single most important aspect of tapering for me ( voluntarily ) was this – Reduce the Dose and not the frequency. So when I tapered off Actiq that I used 3 times a day – I told my Dr to reduce the mcg of each dose but keep it at 3 x a day. Yes it took nearly a year but I felt no withdrawal and no increased pain. Finally when dose was at the lowest made for that drug only then did I go from 3 to 2 and finally 1 per day.

I believe our brain and our body have the need to Be retrained and it takes time. Some might say – a year is a long time but having used Actiq for 5 years my body needed that time to adjust. I don’t miss it one bit & my last dose was in 2012.

Tapering takes time and rushing a Taper is asking for trouble. If the goal is to Taper off – why rush it ?

Louis Ogden

I have had severe chronic pain since childhood and I am almost 68. I do not want to be tapered because I fear going back to excruciating pain; however, this study was voluntary and those that feel it would be best for them I applaud. NO FORCED TAPERING!

Nancy

If those tasked with helping those in pain were given the ability to touch a person and feel exactly what the person feels in exactly the same intensity, it would revolutionize pain management. I was suddenly only give 1/3 of the dosage I once took that kept me active and relatively pain free. Now I can’t even sweep a floor or run a vacuum without my back exploding into pain.

nana

Unfortunately forced tapers are the norm.. with no hand holding.. No reinforcement- no support. Why did they become doctors? To treat simple colds?

My thought is we need to not focus on forced or non-forced tapers but focus on ANY effective support system for patients with chronic disease. Just arbitrarily stopping effective medicine is not the answer. Some will need continued prescription intervention. Not all owies heal without pain.

Many doctors are so buying into the opioids are BAD deal that they are excluding gainful, effective medical support. You walk in and without taking the time to study what has happened to the patient at another doctor’s practice it is common to hear “your dosage is cut in half and you have 2 weeks to wean off. If your previous doctor JUST CUT YOUR DOSE in half that is pretty tight. Withdrawal and serious pain, raised blood pressure, cardiac events often follow. How can a doctor just step in and cause this? These are human people.

I get that doctors get “worked.” and get tired of it. But do they care at all? Not everyone manipulates their support system.

Please doctors figure out a middle of the road..

Mist

I asked to try a taper 5 and 1/2 doses a day to 5.I didn’t realize that little half dose i gave up would matter there are days I could of used the little extra 1/2. I am gonna try to stick with it for me not for anyone else cause days when I have more activity I need those 5.less than that I am bed bound I have a family I have to take care of and myself and to taper anymore would not have a good outcome.

Veronica Clark

I’ve been a chronic pain patient since 1996. I had at first refused any pain medications. I always was of the mindset that one can ‘push through’ their pain. That was, until a neurologist asked me why I allowed myself to suffer so much – to which I had to really dig deep. She was right. That started my ‘opioid’ use. Unlike most people, I don’t get high, nor dependent upon any medications. So, I just took them when I couldn’t tolerate the pain. Again, I was told, this time by a pain clinic, that if I didn’t take the pain medications on a timely basis, I wouldn’t get proper relief. They were right. My life was doable. I was okay with that. Then came more diagnoses. More pain. I was taken off of work. Then, I had to switch jobs because I couldn’t perform the one I truly loved. Things got progressively worse. I developed severe migraines on top of everything else. For the first time in my life, I was fired from my job. Haven’t been able to work since. That was 16 years ago.
A little over a year ago, the clinic I go to was taken over by another company. They decided they wouldn’t give any pain meds, no matter what the person was going through. So, I’ve been without ever since. I can honestly say my quality of life has gone so far down, I don’t care about much of anything any more. I’m in so much pain, nothing else matters. I can’t sleep, have no appetite, and rarely go anywhere except to the doctors, which I even put those off.
This is what people who don’t know what they are talking about are doing to those of us in chronic pain. Keep up the good job….uninformed idiots.

Robert

I had (past tense) the most compassionate Doctor any patient would be honored to have. She understood the dynamics of opiate analgesics applied to pain management far better than anyone I have ever encountered. She had true empathy for those that suffered, not patronizing lip service.

When I initially went to her, I was taking Vicodin and explained my disappointment with my need to keep increasing my dosage after a period of time. She explained after taking several tests, that I was suffering from rebound pain from the acetaminophen in Vicodin. She was right! The Tylenol in Vicodin was the problem and it took me over a month to detox from acetaminophen. She explained that Tylenol, artificial to the body and also toxic, demands higher and higher doses to satisfy pain. She switched me over to oxycodone and once we found the proper dosage, I maintained the same amount for 8 years until the CDC monkey wrench sabotaged every pain patients lives. Unfortunately, this amazing Doctor passed away after two years of our relationship and I had to find another Doctor to continue her good work.

She explained to me that everyone is different. Every patient’s condition, weight, sex and ability to metabolize opiates is different and no two are the same. She also said that opiate pain medication is merely a supplement to our body’s nature produced Endorphins generated by exercise and given ones condition, daily exercise was necessary. Under her regime and following her untimely death, I maintained the same amount of pain medication from 2008 through 2016.

I exercised everyday. I was able to cut my lawn and garden. I was able to shower daily. I was able to go on vacations, travel to see my parents, LIVE A NORMAL LIFE, considering my condition’s limitations.

Today as I write this, I am sitting in my medical recliner. Lucky to get 2-3 showers a month. Rarely leave my home except when my wife drives me to my Doctors appointment. Rarely take a walk, never take my wife to dinner or a show. I am for all intents and purposes, a prisoner in my home.

Keep the Opiate Reduction Studies for Drug Addicts taking it for recreation, fun or addictive personalities.

David W Cole

As a intractable nerve pain patient I look forward to reading any and all articles the national pain report puts out on how to treat pain, reduce the need of pain medication without increasing the pain. We as pain patients are looking for something, some kind of hope. As it really looks like the War on Drugs has turned into a war on Dr’s and their patients. As it turns out, it looks like PROP, CMS, FDA, DEA, CDC and VA are all focused on addiction, all the policies they are implementing are destroying the lives of pain patients. We’ve lost 20% of our pain management specialist, they just quit or are being investigated for over prescribing opioids. Government needs to get out of medicine and go after the criminals and Leave pain patients and their doctors alone. The national pain report brings light to this problem as well as articles on how better to treat are pain. I for one would like to say thank you to the National pain report for all that they do.
THANK YOU NATIONAL PAIN REPORT! Please continue your great reporting on any and all things related to pain.

CathyM

Yes, I had a strong response to that article – and have been thinking about it quite a bit. I realize that an invisible problem in all this discussion is that social media has us discussing things we can only know 3rd or 4th hand… For myself, I realize it would make a HUGE difference if I met Dr. Darnall, and came to believe she was sincere, knowledgeable and working with the patient (even “against the system” if needs be). I *can’t* know that, so it’s only the words on the page that I have to judge if this is another attempt to remove opioids for all but terminal illnesses, or a much-needed study of how best to treat pain. And the same goes for all the comments – I have nothing (except past postings, if I have that kind of memory) to help me distinguish between reasonable and unreasonable postings, except the words, which often aren’t the whole story! And to make it more complicated, mainstream media is accusing many of these websites as being FRONTS for Big Pharma! How does one know what to think??? Or where to get legit info? I spend as much time as I can reading the journals, getting the studies at the source. But how can we make best use of these comment pages? I support all the chronic pain patients who are scared of having life-saving meds withdrawn, but I fear it’ll only change when we find scientists who are honestly working to uncover the mechanisms of pain, so that we have a range of options. Anyway, it’s early morning, so I need more coffee. 🙂

Mareaeric Campagna

It is very understandable the mixed reaction that was given to the study. I would place a bet that all of us that are on medications for invisible, debilitatng, chronic pain. would never choose to have them in our system on a daily basis, understanding how these medications will have a negative affect on all of our organs. This worry is something I am sure everyone else must also have on their minds as often as I do.
I have had 5 Radio Frequency Ablations, approximately 20 various injections and Nerve Blocks, etc., which have really broke the bank and done little for my pain, all the while as I keep getting denied for Disability.
I would simply like to function as a normal human being and carry on a normal daily routine, on a regular basis. It would be absolutely wonderful to go to a daily job, as I once did. I loved going to work, and especially receiving a paycheck! I would just love to begin each day in the morning as I use to, be on my feet all day accomplishing my duties and then to even be able to continue to do things in the evening after dinner. Wouldn’t it just be magnificent to be able to have a good night’s sleep in a bed? How wonderful it would have been to be able to pick up my three grandchildren these past 17 years when they needed lifted or carried, or just to pick them up just because I wanted to.
I would just like to have my life back. If it takes medication to function in that capacity, I should be allowed it, and it should be my decision, knowing the risks. Individuals should not have to suffer daily in pain, it is inhumane. Living on a recliner 18-24 hours a day, while the world zips by because my pain is not being covered as it once was due to government regulations is unfair. Believe me, I make the best of it. I continue to do what I can in my limited condition by lifting others up through calls, cards or by serving at church when I am able as a Worship Leader.
This is what I wear daily on a bracelet and the promise I hold on to:
“I can do all things through Christ who gives me strength.”
(Philippians 4:13)

Linda

I thought some valid questions were raised. I’d like to see them responded to.

Judie Plumley

In 2015, I had to make a decision. It was January, I had finally gotten over the MRSA infection that had wracked my body for over a year. I was using Fentanyl patches, Dulaudid, Soma, Gabipentin, those were the main prescriptions, but I had also used oxy and demerol. The thing was I was losing my insurance in August, and after that, I would no longer be able to get pain meds. I needed to taper. There was no information out there to tell me how to do it.
I started with the Fentanyl, but I did it so slowly, decreasing only every 2 to 3 weeks. My body had to start producing endorphins again. I believe it took me about 2 months to come off the patches. I increased the gabipentin, and started dropping off 2mg Dulaudid every 3 weeks. It did not help the pain, but I did not go through physical withdrawal. The point is I should not have had to guess, but the pharmaceutical companies did not offer that information.
Now, before I get blasted, let me explain. I have had 28 surgeries, 20 before all this mess happened. I always took about two to three weeks of opiates after most of my surgeries, with no problems. This time was different, this time, there will be no getting better.
For people who are not in constant pain, who have had surgeries and injuries that will not leave them disabled or in pain, this study is very important. I remember I was upset because I had to figure it out on my own.
It is important to remember pain is not the same for everyone. Many people only need pain meds occasionally. There needs to be more research, and more information offered to patients so they can make the right decision.

SALLY BLESSING

I’m not “Afraid” that my pain meds will be stopped and I will have to undergo excruciating PAIN not to mention the withdrawal from the abrupt drastic reduction of the dose…. It’s HAPPENING TO ME RIGHT NOW. The inhumane treatment by my Pain Mngmt. Physician of over 12 years has now BLASTED me into a living HELL, for which I don’t know how much more of this I can take. No other modalities were offered, no suggestions, NOTHING! I’ve been the model pain mngmt patient for now 13 years and to force me to go through this especially abruptly, is WRONG.

Jessica

*Note to Editor* Ed Coghlan, the link you provided above sent me to a recent survey on the treatment of Chronic pain. I’m not sure which link you intended on sending us reader’s who haven’t read the previous interview, so I’m providing a link to which I think you intended for us to read. The 1st one I provided may have been wrong. I think this is the correct link:

http://nationalpainreport.com/pilot-study-on-voluntary-opioid-tapering-shows-interesting-results-8835567.html

Gregory John Mooneyhan

A few decades ago, physicians were told that they had to treat pain fairly aggressively. And it’s not like there weren’t studies of opiate addiction around. There were always atudies, it just wasn’t as big of an issue back then as it is today. With pain being subjective, physicians had to put safeguards in place to protect themselves if one of their patients developed an addiction to a medication they were prescribed. Then at some point, physicians started writing out and having their patients sign these “pain contracts”. Doctors weren’t the ones who decided on writing up these contracts, the government made it that way. While the wording and practices differed from practice to practice, they all had pretty much the same rules: if a patient became addicted, the medication started working or if the medication stopped working, the physician would start to taper his patient off of his/her narcotic prescriptions. The way doctors choose to do this is up to them and in my opinion there is no safe way to do it. If you have an addictive personality or not, if you are being treated with these types of medications, you more then likely will develop a tolerance to them. I agree that most patients are afraid to taper off their medications because either they will go through withdrawals or they will start back at square one and will need to work on getting their pain back under control. Now, if you are on a medication, are taking it correctly, and it is working, I don’t see the logic in the physicians need to discontinue that medication. The only two reasons to taper someone off of a drug is if it isn’t working or if they are involved in diversion. It is so hard nowadays to find a physician who genuinely seems interested in making your life better. I foresee a lot of patients in the future who are going to go into a forced taper because of new rules and regulations set forth by the DEA/FDA/CDC. It is unfair to us so we need to take advantage if feeling better physically for as long as we can before things start getting really bad.

Steven Smith

Since January 1st 2018 we are all on a forced taper no questions asked and no interest in symptoms or or what specifically is wrong with you! If you are a chronic pain patient with a degenerative condition that requires more than 200 m m e to live then you’re going to die. It’s as simple as that. This is called genocide folks.