As news of the “opiate crisis” continues to break on a daily basis, I thought I would share my personal experience. Let me be the first to point out that my experience is not that of everyone prescribed opiate pain medications. The need for these medications and the dosages at which they are prescribed are highly variable. But I do believe there are others out there like me who need to be aware of what opiates do. Although they can be invaluable as a source of pain relief, this is not the only effect they have upon the human body. These effects are profound, and those using opiates must always be ready to reassess their circumstances in light of the potential negative consequences of longterm use.
How long is longterm? Well, in my case, it is about two decades of daily use. The first opiate I was prescribed was hydrocodone and acetaminophen 10/325, or Norco (a “semisynthetic, moderately potent, orally available opioid”). For those who might not be familiar with the designations of these drugs, 10/325 means each tablet contains 10mg of hydrocodone and 325 mg of acetaminophen. The maximum daily dose which is “safe” to consume of this medication is dictated by the content of acetaminophen, not necessarily the hydrocodone. Although no one should ever consume more than 3000mg of acetaminophen daily, a daily user of hydrocodone can easily find themselves needing more than 90mg/day as their tolerance to the drug increases over time. And there is also the issue of other drugs, such as Tylenol, which contain acetaminophen and, if used concurrently with the 10/325 Norcos, the safe dose of that medication is reduced even further.
Because of these issues, most daily opiate users will eventually find themselves on drugs which contain only opiates, and most likely, an extended-release formulation will be employed to reduce the need to be taking medication every few hours. I also seemed to get much better pain control on an extended-release formulation. In my case, this was oxymorphone ER (14-hyroxydihydromorphinone, a potent opioid analgesic drug), the generic form of Opana, which is effective for 12 hours. I would take my morning dose of oxymorphone and then be good, essentially until it was bedtime. At that point, I would take what is a much smaller dose of Norco, and only take more through the night if pain kept me from sleeping.
I was always on what was described as a “small” dose of opiates. At most, I took 30mg of oxymorphone ER in the morning and 30mg of hydrocodone through the night. Frequently, I could get by with 20mg of hydrocodone at night and, whenever I thought I could get away with it, I took less oxymorphone ER in the morning. Unfortunately, my medical condition has deteriorated, so I had been taking the maximum amount of medication I am prescribed on a daily basis for many months.
I need to explain, for those not familiar with how this works, the dose of opiate pain medications I was taking in no way meant I was “pain free.” At most, I could hope for about a 30% reduction in the amount of pain experienced throughout the day. The amount of pain I experience depends upon several factors - activity being the most problematic. There are times, if I simply do not move, that pain is almost undetectable. Other times, there is nothing that I can do to “make it better,” even being perfectly still. This is where, in my opinion, many pain medication users get into trouble. In common parlance, the medications used to treat pain are called, “pain killers,” but they are not. At least not at a dose which is safe to take on an out-patient basis. When I have been hospitalized, I have received massively more opiate-containing medications. But I have also been under close medical observation and, many times, on oxygen. When I said above, “there was nothing I could do to ‘make it better,’” what I meant was, there was nothing I could do to SAFELY make it better. Of course I could have just popped a bunch more pills - and sadly, this is what some patients do in desperation. These people tend to die. They are taking pain killers, yet are still in pain. So they must not be taking enough, right? I hope you now know the answer to that question, if you did not know before. Opiates are extremely powerful drugs, and sometimes the line between a “safe” dose and a “lethal” dose is quite fine. Especially if you only have relatively high-dose units available. While the hydrocodone tablets can be safely broken into pieces and consumed, breaking an ER tablet and consuming those pieces can have severe adverse consequences, because the dose which was meant to be released slowly over 12 hours is dumped almost instantly into your system.
I should mention that most persons on opiates for pain management, taking their prescribed dose, do not get “high” from the experience. Taking an opiate tablet for me has all the thrill of taking an aspirin. I do know what the “euphoric” effect can be because of my experiences on high-dosages while hospitalized, but this is not happening on a daily basis for the vast, vast majority of patients taking opiates regularly for pain control as they try to go about their normal lives.
For many years, I did not think there were any concerns with my opiate consumption. In my case, what could go wrong? I was taking a relatively small dose and I know not to take more than prescribed because it can be very dangerous. And I have proven, over 20 years, that I can be trusted to not stray from the path.
What can happen is that, as tolerance to the opiates builds, more and more is required to obtain the same level of pain relief.
What can happen is that, if you require surgery (and unfortunately for me it is not a question of “if,” but “when”), the opiate use makes it more difficult for the anesthesiologist to figure out what a safe dose is for you for pain control.
What can happen is, you can awake from surgery in searing pain because you have not gotten enough pain medication, and it is extremely difficult to bring this level of pain under control once established. Especially since the last time I had surgery there was a shortage of dilaudid, the drug of choice for management of post-operative pain. (As I understand it, there is still a shortage, not only of dilaudid, but of many common medical supplies needed for surgery. But that is a topic for another day.) Not to mention the obvious, you are habituated to opiates and it is going to take a larger dose of anything you are given to have an analgesic effect.
What can happen is that the opiates change vital brain chemicals (neurotransmitters) and their receptors which, ironically, make you more susceptible to pain.
And also what can happen is that opiates will make it impossible, or very difficult, for your body to produce hormones which are vital to the proper function of your being. In my case, my body is now unable to produce testosterone. Among many other really unpleasant effects of this, not having testosterone makes dealing with pain that much more difficult. So, every three months, I have a small incision made in my “hip,” and testosterone-releasing pellets are inserted. I am sewn up, and good to go for another three months. I have been undergoing this procedure now for years.
There are also other issues of the hassle of just obtaining your prescribed medications. Schedule II drugs such as opiates cannot be “refilled.” They require a new written prescription each month. My situation has been complicated by the fact that we moved full-time to our home in California and my physicians were all in Washington state. A California pharmacy cannot fill a prescription for a Schedule II drug written by an out-of-state doctor. Somehow, this is supposed to make it all “safer.” But, in my case, what is happening is that my niece is filling my prescriptions in Washington, and then mailing them to me in California. The chances of the medication falling into someone else’s hands are quite remote. But would it not make more sense for the pharmacy to just dispense the medication to the patient, as long as they have a valid prescription from a licensed physician? The Drug Enforcement Agency is a federal organization which must license all prescribers. Should that privilege not be allowed to cross state lines?
I am in the process of getting established with doctors in California, which is difficult because we live in the mountains in the middle of nowhere, so getting to the closest doctor takes more than an hour, and getting to specialists takes up to four-hours driving, one-way.
So we are now at the place I find myself today. I have consulted with an osteopath/physiatrist here in California who is a pain management specialist. My medical circumstances have been getting worse and the pain level I experience has been increasing. I really was not interested in taking a larger dose of the opiates I take regularly for the reasons outlined above, But I was also informed that chronic opiate use can, apparently, cause brain atrophy. I have a very strong family history for Alzheimer’s, so the last thing I need is another cause of brain degeneration.
We discussed alternatives - some of which called for substituting the opiates I take currently for another, Suboxone (buprenorphine and naloxone). This medication eliminates the “craving” for opiates and reduces the chance of patient overdose. But I do not have craving and what is the point of just switching the opiate you are using for another opiate, when opiates themselves have become the problem? And I would still have all the issues I have now, including those with anesthesia and post-operative pain control.
So, it seemed the only logical choice for me was to quit taking all opiates on a daily basis. I will still have to use them post-operatively, there are no alternatives. But I would get off of them as soon as possible after each surgical intervention.
As I reported earlier, I am on what is considered a “small” dose of opiates. I really did not think getting off of them would be that difficult. However, I have been using them for 20 years which, apparently, makes things a bit more dicey.
We started by reducing my morning dose of oxymorphone ER from 30 to 20mg. My doctor feels the extended-release formulations are the worst in terms of unwanted side-effects. So we are reducing that first and leaving the hydrocodone dose pretty much as-is for the moment. Now I have bounced down from 30mg to 20mg before, but not after taking the higher dose consistently for months. I did not have a horrible time before. The things I have noticed sometimes when I reduce a dose - or even sometimes inadvertently forget to take my pills if something happens to throw me off schedule in the morning - is that I lose the ability to control my body temperature. I overheat and begin sweating profusely. And then a sense of nausea develops. Not at all fun, and my clue to take a pill. But! When you are trying to reduce the amount of pills you are taking, this is no longer an option.
So, I was expecting the sweating and the nausea. But what I was absolutely unprepared for was the intense increase in pain I experienced. Even from a reduction in pain medication of 33%., the pain was easily more than doubled. Just nasty. And also intense anxiety. I reduced my dose on a Friday, so did not contact my doctor until Monday. He was able to prescribe several medications he thought would help. The most helpful being a benzodiazepine. But he also prescribed a tricyclic antidepressant that was supposed to help me sleep (I forgot to mention the insomnia, which began with the process). I found the tricyclic to be pretty much useless. It actually seemed to make me feel worse. And he also gave me phenergan for the nausea. But because we are so far from the pharmacy, by the time we drove down to get the meds, the nausea was not as big a deal. But other symptoms became much worse the more active I was and, when you live in the middle of nowhere, you have to do things. There is no one else around to do them for you. Well, other than my spouse, but he already does way more than I do, so it is hard for me to do nothing. BUT! There have been times over these last days when I just could not function - PERIOD.
So the idea was to cut down to two oxymorphones for one week and then to one oxymorphone for two weeks. As I ended the first week, I was starting to feel better. Not great, but vastly better than at the start of the week. I was hoping the cut to one tablet would be easier. But this was now a cut of 50% of what I was taking. Care to guess what happened when I cut to one tablet?
Well, it was not as horrific as the first cut, because I had all the medications to ease the process and I knew what was going to happen. But it still was not fun. However now, after four days at the new lower level, I am feeling pretty good. I should mention that I am now using meloxicam (a nonsteroidal anti-inflammatory drug (NSAID)) to control the pain. It is not exactly great for the GI system, but one thing at a time. I am supposed to keep on one tablet of oxymorphone, which is 10mg, for another week and a-half and then stop completely. But I have some 5mg tablets left from when I was on them before my dosage need increased. So I think for the last few days I am going to try taking the 5mg tablet, so I do not go from 10mg to zero overnight.
At that point, all that will be left is to reduce the level of hydrocodone I take at night. I am hoping this will be relatively easy, as it is not an ER formulation and I will only be using a bit more than 20% of the opiate amount I was using when I started to reduce my dose. But I should also note that I will be getting psychological counseling and whatever other supportive measures that I require.
I have no idea if my body is going to be able to recover from this experience to the point where I might be able to produce hormones and have balanced neurotransmitters again. I can only hope for the best. I believe I am among the very fortunate to have determined what I need to do for my “greater good,” but I can in no way make that decision for others. All those using opiate pain medications on a daily basis need to be aware of the consequences and balance those against the benefits. For me, the decision became clear.
This experience has given me new insight into how horrific it must be to try and quit a heavy-duty opiate use, such as someone using IV heroin. I knew it was difficult. Now I have a better appreciation for just how difficult. But I am sure I do not know the entirety of the ordeal. Just from my minimal experience, I would say it is amazing anyone is actually able to quit hardcore opiate use without competent medical intervention and psychological counseling, almost certainly best provided in an in-patient setting.
If America is serious about solving its “opiate crisis” it needs to put its money where its mouth is and provide comprehensive treatment on demand. Of course, this does not address the issue of those using opiates who, as yet, have no desire to quit. This is a difficult problem, and this aspect is the most confounding. It seems apparent (to me, anyway) that the current approach of criminalizing this behavior is counter-productive. The resources devoted to the incarceration of opiate users seems far greater than would be required for other, more compassionate, means of addressing the issue. And criminalization has been, to this point, totally ineffective at reducing “recreational” opiate use.
Beginning to use opiates may be a matter of personal choice, with or without medical need. But it quickly becomes a serious issue of physical dependence which, to a greater or lesser degree, compromises the element of “free-choice” in our lives. But it is possible. When you awake to pain, you determine to renew your decision for just another day.