Editor’s Note: Terri Lewis, Ph.D. is a chronic pain advocate who, with the help of you, the readers of the National Pain Report, conducted one of the largest online surveys of chronic pain patients.

She sent us this report recently that speaks to the taper issue. It is a long read but we are going to publish much of it because she shared so many of the comments that survey respondents left.

Here was what she shared:

In a national survey of patient 4619 self-reports regarding interactions with pain management, 77.38% of respondents are female, and 21.35% are male. The bulk of respondents range in age from 40 – 70+ and the majority have at least some college or trade school education to report. Many hold post graduate professional degrees. The vast majority meet the definition of multiple chronic comorbidity or MCC – that is they have more than one progressive condition that requires treatment and that affects multiple body systems.

Responses from female respondents regarding their current experience with opioid prescribing as follows:

• Abandonment – loss of a physician to provide appropriate medication management
• Step therapy- replacement of existing routine with alternatives that may or may not provide an appropriate or satisfactory alternative to existing care routine
• Involuntary taper-Rapid reduction or removal of opioids without patient choice making involved and as a contingency for continued care.

In many of these reports, patients provide ample evidence that opioids have been replaced by other drugs of concern, including anti-epileptics and anti-psychotics, or they have been forced to agree to invasive interventional procedures or unnecessary surgeries in order to continue under some kind of a care umbrella. Many report their physicians cite CDC regulations as law or DEA scrutiny as their reason for insisting on taper. Protesting the appropriateness of these alternatives seems to fall on deaf ears or result in discharge in many cases. Many feel strongly that physicians are dismissive of their concerns because of their gender. Thirty percent (30%) are enrolled in Advantage Plans. Respondents submitted reports from every state in the nation and two territories.

Within these responses are reports of suicide and plans for suicide when alternatives for care and relief are exhausted.

I have printed off some of the unedited commentary from female respondents, which align with the findings in Fenton JJ, Agnoli AL, Xing G, et al. Trends and Rapidity of Dose Tapering Among Patients Prescribed Long-term Opioid Therapy, 2008-2017. JAMA Netw Open. 2019;2(11):e1916271. doi:https://doi.org/10.1001/jamanetworkopen.2019.16271.

I am still deep into analytics. So this is not the final analysis, but it’s a credible snapshot.

 

Here are some of the comments left by those who took the survey.

I am currently as of February 2018 being FORCE TAPERED due to this hysteria My PM dr. Is force tapering me due to CDC Guidelines even though she said I was doing well on my high dose meds. She is afraid to lose her license.

Morphine forced tapered from 90mg to 15mg & dilaudid forced tapered from 4mg to 2mg.

Kaiser Permanente of Colorado says the 2016 CDC prescribing guidelines are actually law (even though I know the are not) so I was forced to taper from 135mme to 120mme last summer. Now that it is 2019 I must accelerate my taper to comply with the 90mme “law” from the CDC.

I have a spinal stimulator that was placed to facilitate the original, willing, taper, and I have had to significantly increase the level of stimulation due to the loss of effective pain management. My doctor has replaced my gabapentin with Lyrica in an attempt to find better pain control as she refuses to return my pain medication to the level it was prior to the forcible taper by my previous doctor. She has referred me to a neurosurgeon to evaluate my back and to a physical therapist, at my request. The previous doctor claimed the reduction of my pain medication was due to FDA guidelines, despite the fact that I was already at a level of 90 mg morphine equivalent per the CDC’s recommended guideline of Oxycodone.

When I lost my pain doctor for that brief period, I was forced to take the following medications even though I had already tried them in the past (tried them one at a time): Lyrica – caused severe dizziness. Cymbalta – cause my liver enzymes to elevate, just like in the past. Flexeril instead of Soma – did nothing for my muscle spasms. Can’t remember the other medications but there was another one. My pain meds were cut by approx. 65% and my muscle relaxer was taken away. I was told that I had a choice of either getting a pain pump or a spinal cord stimulator or they would no longer prescribe my pain meds (had 2 SCS’s in the past). I was also required to redo all imaging, PT, drug screen every 2 weeks – otherwise, no pain meds and “if you don’t like it – go somewhere else”. I was supposed to go to biofeedback and other alternative treatments, and start ESI injections in order to continue getting my pain meds but I found my old pain doctor before I had to do any of the other treatments. I have had sympathetic blocks in the past with relief for only 24-48 hrs, and ESI won’t help my RSDS! I did have a spinal cord stimulator implanted (it was my 3rd one), by my old doctor, but that was just done recently and it was because he had to taper my meds, so I needed something because I was already having a lot of breakthrough pain even before he tapered me, but I was trying to tolerate it and work part-time. So I really had no choice. I’m in a w/c due to a complication with my first SCS and another “alternative treatment” 19 yrs ago. The doctor who put my most recent SCS in (my doctor’s partner), put the battery in the wrong place (instead of in a fat pocket in my hip or abdomen, he put it right over my largest back muscle next to my spine – low back, NOT hip where the fat is). So now I need another surgery to move it! It’s causing much more frequent and severe muscle spasms. My current doctor who I have been with for approx. 18 years with the exception of about 3 months, also required that I try various other medications but I expected that. Opioids was certainly not my first choice but it is what works!

Hawaii has no opioid limits but my pain management doctor is force tapering me saying “it’s coming ” and “your insurance will stop paying for it so you better get used to it “. He didn’t force taper me the month I agreed to bilateral epidural injections.

Methadone was initially prescribed as pain reliever, not as a bridge from one drug to another. I have decided to try and taper off methadone and try to use a less potent medication to fit in CDC recommendations of 90MME Max for my pain control. When I made this change or decision I was denied any help in the taper . Currently my regular doctor is trying to help but this may not last.

8/8/2019 7:20 AM Add tags –View respondent’s answers

BotoxInvoluntary taper Reduced dose Dr #2 added botox injections which one time was HIGHLY effective but he has been unable to duplicate the exact injection site ever since. Also, he reduced my narcotics on day 1, no tapering ! He reduced oxycodone as follows old dosage 6 30mg/day=180mme and new dosage 4 10mg/day=40mme. Morphine old dosage 2 40mg/day=80mme new dosage 2 30mg/day=60mme. Bottom line? My old dosages totaled 260mg/day. My new dosages totaled 100mg/day. On less than half of my former dose, where I was stable and functioning, I am now reduced to living in pain that’s grown exponentially and reduced my functioning status to living on my heating pad in bed. Every. Single. Day.

Epidural injections (ESI)Involuntary taperSpinal cord stimulator When I was seeing a previous pain mngt dr, I was told I HAD to get the steroid spinal injections (which I later found that with my disease, the steroid injections only eat away at the collagen that my body is already low in since EDS is a collagen disorder). I was so desperate for help that I requested the spinal cord stimulator to help with low back pain but once I got it, it helped the CRPS in my feet some, the extreme pain in my knees some, but helped my lower back not at all. Very disappointing. Once he found that I was not getting relief from the spinal cord stimulator for my lower back he decided it was “time to taper back” on the oxycodone he was giving me, like my illness was suddenly improving, while I was only getting worse. It was horrible.

Involuntary taperOpioidsPain medications I have been forcibly tapered by SIGNIFICANT AMOUNTS from my successful dose of opioid pain medication against my will, leaving me in excruciating pain and virtually bedridden and homebound.

Anti-depressantsInvoluntary taperNeuroleptics (Gaba, etc)Opioids Yoga or Tai Chi When I was first told they’d be force tapering me they offered me antidepressants even though I am not depressed and recommended Tai Chi. These were the only alternatives offered as we had already tried Gabapentin, Savella, Amytriptaline, Lyrics, Abilify, Topomax, and a few others I’ve forgotten. I had severe reactions to several of them and no pain relief. I was encouraged to seek other physicians, though can’t find any willing to take a patient on opioids and some just won’t take Fibromyalgia patients.

ChiropracticInvoluntary taperPhysical therapy Step therapy New Physician is requiring me to taper opiates and eventually stop them as she doesn’t believe in using them. Wants me to see a chiropractor Am already getting Physical therapy, and using relaxation techniques.

BotoxInvoluntary taperMedical CannabisOpioidsPain medicationsSurgeryTENS Unit Before I was tapered I went to PT, warm water exercise, used tens, medical marijuana. I still use all of that. I failed methadone, neurontin, Botox, Marcane injections. Too painful and developed antibodies to Botox. My low platelets prevent spinal injections as well as surgery. Neurontin caused suicidal thoughts, psychotropics caused exacerbation of dystonia and tardive dyskinesia caused by misover prescribing of Reglan. Damage permanent. Only drugs that don’t exacerbate movement disorder and bleeding disorder are opioids

Involuntary taperOpioids I have been forced to taper by other physicians in the office even though they know my diagnoses because they don’t like opioids.

Again, with my move a year ago to a new state, it has been extremely difficult getting established with new doctors. And in most instances, near impossible. No one here wants to take on complicated cases, especially when it involves chronic pain. Several of my medications are being forceably tapered , and I am experiencing drastic loss of quality of life. No other alternatives for opiates exist for me. Yet I am being asked over and over again, to retry drugs such as Gabapentin, Lyrica, Topomax, etc that in the past have resulted in intolerable side effects, even hospitalization! Why would I want to retry a drug that I was not able to tolerate previously? Why are injections still being brought up to me, when I should NEVER have them again?

Before guidelines I was forced to taper and it cause major health issues so then doctor increased. Also after level 3neck fusion surgery Surgeon refused to treat severe pain that had kept me awake for 7 days I slept a total of 2 hours in 7 days family doctor seen I was in dire straights and gave me a fentanyl patch so I could recover he was gone on vacation after my surgery.everyday I begged Surgeons MA and RNs to give me stronger pain meds I was told to meditate,Pray listen to music I was ready to check out of life . ER refused to even see me .because the surgeon . so then went to family doctor office my doctor was on vacation and not in and then seen an RN and she would not even let me see a doctor that was my an associate of my family doctor as he was on vacation. Because of the severe pain RN’s were acting as doctors when my family doctor got back from vacation I had to lie to get into see my doctor .

Was told they would put me on suboxone for pain I was tapered for 9 months due to state laws, but I went to capital and fought for exemption trigger point injections were pushed on me even though I am allergic to steroids and I told him I did not want any more invasive treatments Living Life Well class was mandatory. He still makes me go to alumni meetings on Monday nights. I’d rather have a root canal

60 my of morphine sulfate per day and 2, 10 mg oxycodone per day. Every month they are tapering me down!!

I don’t understand above questions. Yes my Norco was tapered from 70 mg to 50 mg a day due to DEA recommendations. I use stimulation, epidurals, OTC Advil, lidocaine patch and compounded AIF cream for pain. Since lowering my norco mybpain is now unmanageable and nerve pain is miserable. All I want is relief to a level that is tolerable. I will never be pain free but a level of 5-6 is what I need and 60-70 mg a day of opiate worked fine for me. Now I’m couch ridden.

I had been using Fentanyl Transdermal patches, last month dosage was reduced—pain increased, oxycodone-same, Flexeril-stopped totally, Xanax—stopped totally-NO TAPER OFF, Duloxetine-same. Last month Dr. required me to fill prescription for NARCAN!!!! He said it was required— in case I overdosed!!!!! I am 69 years old!! He has known me to be a very compliant patient for 20 years!!!!! Now I had to spend $24.10 for something that I will have in my safe??? I don’t plan to O.D.—- but, if I did, who would deliver it to me??? We are pain patients, not Illicit drug addicts!!!

I have had a forced taper of the Morphine which has caused me to be put on Topamax (my version of Gabapentin/lyrica) to help with nerve pain, recieve various steroid injections, radio frequency ablation and I am now in the process of getting the spinal simulator implant to hopefully provide more relief. I currently can do very minimal activity & have little to no quality of life due to my pain levels.

No change in prescriber or physician, but i am now on a forced taper to comply with state rules.I take other medications in conjunction with opioid therapy but they only compliment it. Without opioids, they fail to reduce pain in any noticeable measure.