Opioid Treatment 10-year Longevity Survey Final Report
About eighteen months ago, I approached the publisher of Practical Pain Management to assist in a survey of long-term, opioid-treated pain patients. Rightly, as any good publisher, he asked why should I go to the time and expense to do a longevity survey? I then presented him my laundry list of reasons for doing the survey. Some explanations of my reasons for doing this survey are given here. Quite frankly this survey was needed, since we simply have little data on opioid long-term treatment.1,2 Also, opioid treatment is constantly under attack, so it seems logical to see if the popularity of this treatment is justified.
Reasons for the Survey
First, recall that we have just finished the “Decade of Pain.” Ushering in this decade were many laws, regulations, and guidelines—promulgated in many states—that encouraged physicians to prescribe opioids without fear of legal reprisal. Did anyone get help this decade? Did this political and humanitarian effort pay off?
Secondly, my own experience in practice was the predominant factor. I started my pain practice in 1975 while serving as a Public Health Physician in East Los Angeles County. Cancer and post-polio patients needed ‘narcotics’ (the common name prior to the more correct usage ‘opioids’) treatment for their severe chronic pain. I’ve now followed some chronic pain patients still taking opioids after 25 to 30 years.1 Also, I was a government consultant in the 1970s on Howard Hughes who managed to survive 30 years with intractable pain after a 1946 plane crash. His average opioid dosage over that time period was about 200 mg of morphine equivalence. But are my patients unusual or simply responsive to an overzealous clinician? Do opioid-treated patients in the hands of other physicians do just as well over a long period?
A little over a year ago there was another reason to do a longevity survey. At that time there was a vitriolic, anti-opioid propaganda campaign being waged. Some prominent academic institutions, pharmaceutical companies, professional organizations, and journals, almost in unison, essentially claimed that opioids shouldn’t be prescribed due to hyperalgesia or other as-yet unnamed complications. Some parties stated that opioids, if prescribed at all, should have a dosage restricted to some arbitrary number such as 200mg of morphine equivalence a day. Some claims fundamentally suggested that pain should only be treated with non-opioids, because opioids actually “cause pain.” Amazingly, some detoxification centers actually advertised for “clients” on the basis that the person’s pain would be cured if the patient spent $10K or $20K to detoxify from opioids. Needless to say, the anti-opioid campaign was hardly backed by bonafide medical management pain practitioners or scientific studies. So what was needed was a simple survey to see if there are long-term opioid-treated patients who are still doing well.
What the Survey Can’t Determine
This survey was not intended or designed to answer some ancillary questions. Not answered is which opioids are superior or could patients have done as well without opioids? Also, it wasn’t intended to determine optimal dosage or complications. The intent was clear and simple: Do some opioid-treated patients improve pain control, function better, and enhance their quality of life over a 10-year period?
Survey Methods
In early 2009, an advertisement was placed in this publication to identify any physician who had a cohort of chronic pain patients they had treated with opioids for 10 or more years and were willing to share outcome data. Three physicians, one each from Kentucky, Louisiana, and California, reported a total of 76 patients who have been treated with opioids for 10 or more years. These, together with the 24 patients treated by this author,1 provide a cohort of 100 patients who have been treated with opioids for 10 or more years and serve as subjects for this survey. Physicians completed a survey questionnaire for each patient that inquired about demographic status, cause of pain, opioids currently used, basic physical functions, activities of daily living, and stability of opioid dosage.
Results and Findings
Patients in this study appeared typical of most chronic pain patients in that they are primarily middle age or older and have degenerative diseases of the spine, joints, or peripheral nerves (see Tables 1 and 2). Most have maintained on one opioid, although some patients required two or three. The majority have been on stable dosages for many years (see Table 3). Despite the longevity of treatment, most function quite well. The vast majority of patients report good function in that they can dress, read, attend social functions, drive, and ambulate without assistance (see Table 4). Almost half (45%) reported they had been on a stable opioid dosage for at least 3 years.
Opioid Treatment 10-year Longevity Survey Final Report
Table 1. Demographics of 10-Year Opioid Patients
| Age (Yrs) | Range 30-83 |
|---|---|
| Males | 61 (61%) |
| Females | 39 (39%) |
| Length of time in opioid treatment | 10 – 35 yrs |
| Stable opioid dosage without significant escalation | 3mos – 31 yrs |
| Spine disease | 51 |
| Arthritis | 16 |
| Peripheral neuropathy | 14 |
| Headache | 10 |
| Knee diseases | 5 |
| Abdominal adhesions | 5 |
| Hip diseases | 4 |
| Shoulder/arm diseases | 4 |
| Fibromyalgia | 4 |
| 113* | |
| *Adds up to more than 100 as some patients had more than 1 diagnosis. | |
| No. of Opioids Currently Used | N(%) |
|---|---|
| 1 | 62 |
| 2 | 26 |
| 3 | 12 |
| Opioids Currently Used | |
| Hydrocodone | 56 |
| Oxycodone | 25 |
| Fentanyl | 15 |
| Morphine | 13 |
| Methadone | 8 |
| Propoxyphene | 8 |
| Hydromorphone | 5 |
| Other | 6 |
| N(%) | |
|---|---|
| Dress without assistance | 82 |
| Attend church/social events | 89 |
| Read newspapers, books, magazines | 97 |
| Gainful employment | 25 |
| Care for family | 61 |
| Ambulate unassisted | 85 |
| Ambulate with cane | 5 |
| Drive a car | 74 |
Discussion
Recent epidemiologic studies indicate that about 10 million Americans now take opioid drugs for chronic pain control. This relatively recent and dramatic occurrence has had little outcome study.1,2 The author recently reported 24 Southern California chronic pain patients who were treated with opioids over 10 years and who had positive social, physical, and functional results.1 Outcomes from other patients treated by other physicians in other geographic areas were needed to confirm or deny the positive outcomes found with one physician in one geographic area. As stated above, this survey was not intended and doesn’t imply that there are patients who may have done as well or better if treated differently. Also this survey does not include patients who did not respond to opioids or stopped them due to complications.
This survey doesn’t lay claim to any sophisticated epidemiogic methodology or randomization. All this survey intended to do was meet one fundamental goal: “Are there chronic pain patients in the United States who have taken opioids over 10 years and report less pain, better function and have a better quality of life?” This survey satisfies this simple goal.
Conclusion
Patients reported here are functioning quite well after 10 or more years in opioid treatment. The vast majority can care for themselves and even drive. Opioid dosages have generally remained stable for long periods without significant escalation. Given the findings here, there is no obvious reason to discourage opioid use or encourage pain patients to cease opioids.
Related
Filed under: General Problems
Ditto,,my meds have not been changed in 10 years,,same amount ,,no decrease,,no increase,,, I AM FINE!!!!!!!!!!!!!!!!!!!I AM ABLE TO FUNCTION,BREATH,COUGH,SNEEZE,YELL,GO TO THE BATHROOM,,MOVE,,WITH A PAIN LEVEL AT 3-5,,,,,WHICH IS DOWN FROM 10-12,,FOR 10 FREAKEN YEARS!!!!!,, it started 15 years ago w/ a spinal cord tumor t-1–t-9,,,,,causing permanent damage to cord,and all muscles,nerves attached,,,..I’d be dead,,,if we did not 1st find the tumor causing so much physical pain I could breath w/out severe pain,,then taking another 3 years to get the right combo of meds that work for me,,,,but if we never found the cause,or found the right combo,,,I WOULD BE DEAD!!!! Every human being wants to be useful,to function,to contribute,,and when u can’t even breath,,or function,,,,whats the point!!!,,Us long termers have watch pain management go from a B- to a F,,,in the course of 5 years,,,,its sickening the lack of humanity towards mankind these klondike bar opiatephobs have done to the medically ill w/painful medical conditions,,,and they always forget that,,,WE ARE MEDICALLY ILL W/PAINFUL MEDICAL CONDITIONS,,,!!,,,JMO,, watching painmanagemnt go down hill soo bad,,,i blame a lot f people,,,but shrinks like Klondyn are a huge part of the problem,,,,thank god we got Dr Tennant,,,we need more like him,,and some LAWYERS!!!!!NOW!!!,,mary
I had been on high dose oxycontin and oxycodone after becoming ill from a mystery illness that crippled me from pain in 1998. I was pulled off because the National Naval Hospital said in 2000 (when the media was covering the OxyContin deaths from crushing and snorting) they didn’t want any negative media attention and we’re taking everybody in the pain clinic off opioids regardless of pain. They wanted to put me into rehab and just the thought terrified and offended me! I told them I wasn’t an addict and wasn’t going to rehab! I asked them to allow me to go down 10mg a month. They eventually agreed and did. These days pain patients are given no guarantee and often told to go cold turkey which is highly life threatening particularly in pain patients without the pain being resolved. I went down as my pain went up and my ability to take care of my kids as a single parent (as is often the case with serious illness my husband of 20 yrs left me at the time I first became sick because of my medical condition) I could only parent from my sofa literally. As lazy as I looked it took me 2 days to rest after a shower every third day that felt like bullets hitting me. I took life one second at a time. I went off the opioids without one single thought of drug seeking behavior. I could never have survived if it wasn’t for my saint of a sister and The Lord! My kids did well themselves in life but they missed out on me, my attending school events, watched me sob in private many days a week and felt the double wammy of divorce, desertion, and a sick mother when it could have gone so much better for me, for them, and our future and relationship. They couldn’t have possibly known the depth of love and the effort I made not to end my life with the constant thoughts and heavy persuasion from the incredible pain I suffered with every day for those following 10 or more years. Even when I went back on after I researched and went to a dr who would prescribe them I still held back and they were reluctant to prescribe at an optimal dose so I was under treated. In 2013 after being ridiculed and mistreated by a new pain doctor after I moved near my sister to once again have her support I sought the Dr I see now and have been put back up to an effective therapudic dose that has lowered my high blood pressure, lowered my 105 heart rate, and given me extended breaks of the mind blowing pain, freedom of PTSD from the pain, joy in playing with my grandchildren. I have since found out the cause of my pain all those years wasn’t fibromyalgia at all but Dercum’s Disease. I’m covered with painful tumors in my subcutaneous and fat tissues and is known to be progressive, rare, and one top 4 most painful conditions according to a recognized standard measurement. Never mind I had no pituitary and was denied even the correct hormone treatment by years of seeing endocrinologists that ignored my reporting of the severity of pain and gave me an invalid test year after year because I was seen as an emotional unstable patient because of the tears I shed as I’d tell them how sick I was! My life the last 25 years has been an absolute hell without exception except for these last 3 years! I have NEVER had one opioid side effect, NEVER been high, never broke a law, and have a 21 yr military history of being ranked #1 or #2 out of my peers at my prior commands that required screening for top performers and stable backgrounds and I was often the commands physical readiness officer and had always been subjected to random urinalysis prior to getting sick. There is not one doubt in my mind had I not had my sisters help, my new doctors amazing support, and my experience with a suicide attempt by a close family member that influenced me and my faith to hang in and not give up! We are people who are sick beyond measure and suffer the nightmare equivalent of pain to being hit by a car daily but never get better and have no marks to show from it often. Who will stand with us and help us get the effective medical care everyone deserves! We have no rights right now that guarantee treatment and to even be heard and believed because there are drug addicts who are dying from overdoses of herion and illegal opioids coming from other countries. The pill mills were the guilty and they’ve been closed down now for years! Those numbers are NOT from severe chronic pain sufferers with legitimate prescriptions unless they commit intended suicide because they’re told they will no longer be given any opioid prescriptions! Believe me they face no choice in the circumstances they face! The DEA, CDC, FDA have been lying and mixing numbers that have no relevance or reason to be mixed with heroin and illegal opioid deaths. Alcohol is being sold in grocery stores and are almost always associated with heroin and illegal opioid use! What’s that about? What happened to our pride in thinking for ourselves and personal responsibility in this country? This is affecting every severe chronic pain patient everywhere regardless of their medications because we are seen as the cause of all these deaths and are profiled and prejudiced to the point of being refused care in ERs and primary care doctors who don’t want the burden of untreated pain patients in their offices and pharmacies who are told they face severe fines if they fill too many opioid prescriptions no matter how legal or given no guidelines as to what that number is! This is and has been happening across this nation since the illegal pill mills in Florida and has left ENTIRE states without any pain doctor willing to prescribe these life saving drugs!!
I have been on same medication for 10 years at same high dose I am not addicted I don’t abuse it my life depends on it Is the reason I have a quality of life the only reason I am able to have a life. Untreated pain destroys from the inside out and it is a slow gruesome death pain by pain everyday eating away at you robbing you your family of your body and mind your sense of being a human being. As you live in agony that is not a life that is not living it’s existence a body struggling with the motions to just breath in and out without screaming please just make it all stop. No thanks I don’t want that for me ever again. If opioids weren’t working as well as they have been for all of these patients from doctors all over the country. Opioids work well for pain. If opioids didn’t work so well Doctors would never have allowed high doses for long term treatment in the first place and they certainly wouldn’t of allowed it to continue for 10, 20, 30 years and more since chronic pain is chronic meaning it doesn’t go away so that means you will require long term opioids for long term pain relief. It isn’t rocket science if it works doctors continue treatment at the first sign of a problem they stop. But doctors didn’t stop treatment doctors only stop treatment when threatened by DEA FDA CDC etc.. Leave doctors to take care of patients and put drug addicts in treatment if they want to stop and spend your time teaching kids not to do drugs and alcohol that is all you can do . You can’t save drug addicts from themselves unless they want to saved. But taking away opioid pain medications from chronic pain patients will not save patients you will and are killing patients and I don’t want to die yet. Stop killing the chronically ill with cruel torture and act like you are doing us a favor because we know and you know you aren’t doing it for patients you wouldn’t lie you wouldn’t do things in secret if was all for the best interest of human beings.
I’ve been on the same dose of Fentanyl for 15 years. I’ve never had to increase it, and my pain is stable in spite of two additional back surgeries.
No this isn’t a randomized controlled trial (RCT), but it is a retrospective report that demonstrates that opioids are safe and effective IN THE RIGHT PATIENTS.
My dad had to take oxycodone (same low dose, same amount) for over 30 years when he became physically disabled (botched hip surgeries on both hips, infection set up and by the time he was 60, he’d had 7 or 8 more hip surgeries on his right hip, 2 on his left). This medication kept his pain level down enough that he was able to get around somewhat with a walker or cane.
I witnessed first hand his body physically break down when his doctor quit prescribing it to him (around 2010?) and doctors in this area became too afraid of the DEA (switched him to tramadol, which didn’t do much for his pain).
Within a year or so, he was confined to a wheelchair 24/7 because he could no longer put any more pressure on his hips due to the severity of the pain. This caused his diabetes to worsen, which caused horribly poor circulation in his legs due to being confined to a wheelchair.
He also began getting huge open wounds on his lower legs, toes began turning blue and becoming numb, feet and lower legs many times swelled two to three times their normal size. The wound on his right hip had never healed, so he had a drain surgically placed inside, so that the infection (yes, pus that smelled awful) could drain out.
The fact that he had to sit on this infection 24/7 due to becoming confined to a wheelchair made it even worse. It became extremely difficult for him to stand up long enough (less than a minute) for someone to change the dressings. He no longer could go anywhere due to the severity of his untreated pain.
He also had COPD, emphysema, congestive heart failure, on oxygen 24/7 and the infection that began after the first botched surgery had set deep within his hips (no doubt circulating within his body). He was on 19 or 20 medications, only one for pain (1 tramadol up to 4 x’s a day).
He went from being able to ride in a car, walk short distances with the aid of a walker or cane, go out to eat, attend my graduations, my wedding, go on 3 vacations with us to becoming an invalid unable to walk the shortest distance to the bathroom, ride in a car, load and unload a dishwasher, missing his grandkids’ graduations and various activities, etc.
A week prior to him being placed on hospice care, he was admitted into our local hospital, where he was denied him pain medication as he laid in the hospital bed in severe pain. A little over 24 hours after being released from our local hospital, he was back in our local ER, only to get air-vacced (helicoptered) up to a bigger city and better hospital.
When he got there, they immediately addressed his pain, gave him adequate relief, and put him in ICU. He was there for about a week until it was decided there wasn’t anything else they could do for him.
He was released, allowed to go back home, FINALLY having his pain adequately treated and kept under control.
He lived for 3 weeks after being released (passed away Feb. 2015). It literally took the diagnosis of death to have his pain adequately treated. He had some quality of life when he was prescribed oxycodone for 30 years, only to have that medication taken away due to no wrongdoing on his part.
There’s no doubt in my mind the neglect of his severe pain contributed to the quick breakdown of his body. I can’t say he would have lived much longer, but had his pain been adequately treated during the last 5 years of his life, he could have had some quality to his life. (Sorry this is so long.)