Let’s All Freak Out About Zohydro!

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In fact, why don’t we all just sit down and have a freak out about pain medication, in general. After all, it is an “epidemic”. It’s an all out free for all out there. People just scarfing down pills for no reason at all OD’ing left and right, and no one to blame but that goddamn Big Pharma trying to make a buck off all those poor souls who have no control over themselves, right?
Well, let’s try this again, only with a little logic thrown in just for the fun of it.
There are people out there with legitimate pain needs, and there are people without. There’s no test for pain, only self report, and the one they use is pretty damn subjective.  “On a scale of 1 to 10, 10 being the worst pain you’ve ever felt in your life, rate your current pain.” Well what’s the worst pain a person may have ever felt in their life? That all depends on A) their experiences, and B) their pain tolerance. So what could be the worst pain? Childbirth? Breaking a bone? Losing a limb? Ruptured disk? Ruptured appendix? And once having experienced this severe and awesome pain, doesn’t that sort of skew the curve? For me, I have many pains that others might consider unbearable. I have TWO ruptured disks, multiple sclerosis which causes quite a lot of painful symptoms, and my neurologist is pretty sure that much of my “MS” pain is actually the result of fibromyalgia, for which I’m scheduled to see a rheumatologist to determine whether this is the case. These are my day to day pains. One of the most painful things I ever experienced in my life was, when I was 12 years old my mom and I used to work summers cleaning an old couple’s house and one day a hot pot (which was a very old school model and was basically a big, metal, electric tea kettle that had been heating all day) fell onto my bare foot and was so hot it stuck to my skin and pulled quite a bit away with it when I kicked it off. I had no painkillers stronger than tylenol, it was the middle of the summer in Phoenix so at least 115° outside, there was no way to cool it off except my dad’s brilliant plan of putting it into a tub of icewater that was more ice than water. Then my parents loaded me up into our van (with no a/c) to take me home (where there was also no a/c) and stopped at the grocery store along the way to get some type of burn salve. I was left in the van in the heat, screaming in pain, with an ice pack, just some ice wrapped in a washcloth. By the time my parents returned 45 minutes later with a cart full of groceries and chicken from the deli the ice pack was bone dry and my foot felt like it was on fire. (Nice parenting skills, eh?) If I call that instance of pain, which was quite acute, a 10, that would make many of my day to day chronic pains fall somewhere in the 3-4 range. But it’s all relative. It doesn’t mean that those chronic pains aren’t quite painful and disruptive, only that in comparison to the worst pain in my life, they’re significantly less. If I drop out the “worst pain in my life” aspect, I live with a chronic pain aspect, day to day, that falls around the 7-8 level, and shoots up to 9-10 when the pain becomes more acute (say when my back or joints are flaring up). So, there’s really no easy way for any one person to even measure their own personal pain level, let alone the medical community measure and track the pain of patients by and large.
Still, they like to think that somehow they can, and they just love to postulate pain levels based on various illnesses and injuries and decide proper course of pain treatment accordingly. Nevermind other variables such as medication tolerance, pain tolerance (or intolerance), that make this particular “science” pretty much as individual and subjective as medicine can possibly get.
So we’ve got lots of people going into ERs, general practitioners and pain management clinics and complaining of chronic pain. Much of this pain is, to some extent, verifiable. There are MRIs to show disk degeneration, signs of arthritis, tests to be done that can reasonably prove to some Drs that a person suffers a pain related disorder like fibromyalgia, but there is little consensus as to what should be done from there.
In the past, (and I’m talking maybe 5-10 years ago, not the glory days of yore when Bayer produced heroin headache medicines or one could pick up any number of straight opiates, barbiturates or hallucinogens from the corner doctor/barber for whatever ailed them), Drs would decide whether a patient required long term pain management, would choose a medication, (quite frequently some form of hydrocodone), would increase the dosage until the person gave a thumbs up and they were good to go. They could call in new prescriptions to the pharmacy, could call in as many in advance as the Dr saw fit and prudent, and the patient could pay for as many advance prescriptions as they had on file. For a person with legitimate, chronic pain needs, this was great. They could work with their Dr to treat their pain as the responsible, intelligent adults that they were and there were no issues.
Unfortunately there’s this nasty little disease called ADDICTION. Addiction makes people do funny things. Many people abused this simple and easy system. A lot of people with legitimate pain concerns were lumped into a group with a very nasty title known as “med seekers”. Once one was labeled a med seeker, the chances of them having their chronic pain issues addressed suddenly became slim to none. People with legitimate pain found themselves pulling some of the tricks that addicts did. They did what was known as “hospital shopping” or “doctor shopping”, trying to find someone willing to write them a prescription, and sadly they looked just as desperate and needy as any addict who was doing the same because they WERE. For any person who doesn’t live with chronic pain it’s difficult to understand just how terrible life can get when every movement, every MOMENT, is a struggle. It’s a special kind of hell. Many Drs would kindly not even differentiate between an addict (and we’re talking about a person who is using these medications solely for the purposes of recreation, escapism, or physical need/craving), and a person in pain (seeking medication solely for the purposes of alleviating pain not caused by withdrawal symptoms). As far as they were concerned, if a person used pain medications long enough to develop chemical dependency, they were an addict plain and simple. And MANY people share this same view.
So before we get into how and why things have changed in the last several years with regards to pain management, let’s talk a little bit about addiction. The big scare drug that’s got everyone rattled right now is Zohydro. It’s a slow release hydrocodone. Everyone is calling it “the next Oxycontin” and they’re trying to say it as a means to frighten people, but from a medication perspective they’re not wrong. The only difference between oxycodone and oxycontin is that oxycontin is CONTINuous release. It’s a slow release form of oxycodone, so it comes in higher doses because it’s supposed to last for 12 hours, but this varies depending on the person’s pain level, their tolerance level, and how quickly they process out the medication. So, Zohydro is the equivalent form of hydrocodone. It’s a slow release tablet in a higher dosage so that it can last longer in the person’s system, giving them continuous pain relief. There are two major differences between the two sets of medication. One is that oxycontin pills are suspended in a gel making them difficult to crush, cut or chew. This helps ensure that the continuous release effect remains intact. Still, if one were able to crush and snort 20mg of oxycontin, it’s still basically 20mg of oxycodone. The continuous release aspect would no longer apply, but one could still conceivably crush and snort two 10mg oxycodones and get a similar effect. They do refer to oxycodone as “immediate release”, as opposed to “extended release”. The other major difference is that with hydrocodone, the regular tablets are paired with acetaminophen, which is Tylenol. Many people believe that this pairing is a deterrent to abuse, as acetaminophen overdoses are deadly. However, having worked as a substance abuse counselor for many years I can tell you, this is no kind of deterrent to an addict. They don’t care.
Addiction is a terrible thing, and by and large what I’m seeing in the articles proclaiming Zohydro to be the deadliest drug to date, people’s concern is that addicts will misuse and abuse the medication and do themselves harm, and they’re probably correct. Addiction (to substances) IS to misuse and abuse a substance without concern for one’s own personal welfare, without concern to risks to one’s interpersonal relationships, job/career, and/or ability to support oneself and conduct day to day activities. That’s it, in a nutshell. So if a person shows up to work high on pain pills and loses their job, they may have a problem. This is where things get a little fuzzy and the distinctions between a person who uses medication for pain relief and a person who abuses medication for other purposes get a little thin. The thing is, a person with legitimate pain issues is far less likely to develop long term, debilitating issues with their medications, provided they’re taking their meds to treat pain and for no other purpose. Not to unwind after a long day at work, not as a means to escape, but to treat pain and only treat pain. They’re less likely to take more than is necessary, less likely to form unhealthy habits surrounding the use of their meds, and will even have less issues with chemical dependency. This does not absolve them of all risks of chemical dependency, however. Opioids are among many medications that, when taken long term, require the dose to be titrated off, or tapered off, in order to discontinue taking them to avoid withdrawal symptoms. MANY medications have such dosing requirements, and you will often hear in commercials, or see in the dosing instructions of medications, “do NOT discontinue this medication without consulting your doctor”. That’s not a suggestion. The great thing about opioids, as opposed to many of these other medications is that they can’t kill you during withdrawal. You just feel like crap. Aaand…that’s probably the understatement of the year. Many people are under the mistaken impression that heroin withdrawal can be fatal. This is not true. Only two commonly abused substances are deadly during withdrawal phase and will warrant an immediate placement in a medically managed substance abuse facility. They are benzodiazapines, which are by prescription only (but are frequently sold on the street as well) and include such medicines as Xanax, Ativan and Klonipin. They are often prescribed to treat anxiety, but have many other applications. The other substance is alcohol. Good ole legal alcohol, and both can cause seizures and death during withdrawal. It’s certainly not something to be taken lightly. Withdrawal from opiates is definitely very uncomfortable, but not fatal. It can cause chills, sweats, nausea, vomiting, and diarrhea, and typically acute withdrawal lasts a few days to a week at most. However these side effects are so unpleasant that many people continue taking medication or enter into a methadone program to try to alleviate withdrawal symptoms to the best of their ability.
So this is where the line between addicts and pain patients may become fuzzy. Pain patients may find themselves taking a maintenance dose to avoid withdrawal symptoms. While they’re far less likely to develop unhealthy habits regarding their pain management, over the course of years of treatment their dosage may need to be adjusted to account for increases in tolerance to medication, increases in pain due to their condition, or generally lessened effectiveness of the medication over time. Coupled with chemical dependency and almost immediate withdrawal symptoms upon discontinuing the medication, they may continue to take a maintenance dose even on days when little to no pain is present. At this point, however, their tolerance is such that they’re likely no longer experiencing any of the “fun” side effects that others seek out when taking the medication recreationally.
From an addict’s perspective, this tolerance is the real, and literal, killer. It doesn’t take much to build a tolerance to these medications so for a person who is now taking a maintenance dose to avoid withdrawal, their tolerance continues to increase and in order to experience any recreational effects, if that’s their goal, they need to increase the dosage and/or change the route of administration. They may crush the pills and snort them, or inject them. This is one of the big sticking points for Zohydro madness. As stated earlier, Oxycontin is suspended in a solid gel to prevent people from crushing them and using them in this way. Zohydro currently has no such safety mechanism, although the maker’s have stated that they intend to lace the pills with Niacin to deter people from snorting or injecting them. Now, while acetaminophen would be a very poor deterrent, Niacin would likely be a very effective one. Anyone who’s experienced Niacin flush would not like to experience it again, and while addicts may skirt danger by taking too much acetaminophen, they certainly aren’t going to continue to try getting their high off a drug that essentially spoils their high with extremely uncomfortable side effects.
Still, people are unhappy with this solution and they have asked, who will receive Zohydro? The makers give examples such as a woman with metastatic breast cancer, or a man with 2 failed back surgeries and debilitating back pain. They say that’s all well and good but how long before people with arthritis, low back pain and fibromyalgia begin to receive it? No lie, I’ve seen these questions asked. And I say, why are the latter people’s pain less intense or debilitating than the former’s? What scale are they using to decide whose pain is worthy of a stronger medication? Do people with arthritis and fibromyalgia not suffer enough? Must a person with low back pain need also suffer failed back surgery before their pain is taken seriously?
There are many inherent risks to long term pain management through opioids. People with chronic pain should definitely be educated more strongly on the risks they face when they choose to embark on that journey, but right now, there are very few choices in long term pain management, and when you live with pain all day every day the risks start to seem less important if only you can get some relief.
When my back first started to deteriorate, before I’d gotten proper imaging and even knew what the problem was, I was back in my general practitioner’s office speaking to the physician’s assistant, barely able to stand, shaking with the amount of pain I was in, and practically begging her to help me. She looked at me so exasperated, chided me for having come in again, that it was the 5th time that year about the same problem! She threw her hands in the air and said, “well all I can do for you is prescribe you more pain meds!” I told her that if that’s all she could do, then do it! That if she had some other magic that could make this all go away I’d love to hear it, but if all she could do way prescribe me meds then prescribe them already! I wasn’t asking her to move mountains, just take the pain away. Which honestly, moving a mountain might be easier.
Today, everything has changed. The Feds have made certain that anyone on a schedule II medication (which includes oxycodone and oxycontin, and now will include hydrocodone and Zohydro), must have a physical prescription from the Dr and take it themselves to the pharmacy to be filled. For a person with chronic health issues that require such medications, this is no easy feat. But in order to protect all the addicts, we have to go through this charade. Before Zohydro hit the market, hydrocodone meds were schedule III, they could be called in to the pharmacy. In addition to this, while taking long term pain medications at a pain management clinic, I have to submit to random drug testing to ensure that I’m actually taking the medication I’m prescribed (not selling it), and that I’m not taking any other medications not prescribed to me or any illicit substances. The drug tests are not covered by my insurance, the Dr’s office, or the Feds, and they run upwards of $80 each. If I refuse the test, I don’t get my prescriptions. I also have to notify my Dr’s office if I ever fill my prescriptions at a different pharmacy, which happens often because the Feds have also limited the amount of pain meds any one pharmacy is allowed to carry. I often spend hours sitting in my car calling around to find out who has them, and it’s Walgreens’ policy to not give out that info over the phone, just in case I’m planning to rob the place, so since I don’t intend on driving to every Walgreens in a 50 mile radius, they’ve permanently lost my business. The Feds say this is all meant to “protect” the patient, but it’s really meant to prevent people from taking advantage of the system. They make no secret as to why they now hide all the pseudoephedrine behind the pharmacy counter, and I’ve picked up prescriptions for oxycodone AND oxycontin, while at the same time purchasing pseudoephedrine, and you know which one I had to sign a registry for? Not the scary opiates. I don’t know why they keep making claims of protecting people by making seriously ill folks have to jump through so many hoops just to be treated for pain.
There will always be addicts. Addiction is a disease, and people who suffer from it deserve to be treated for it, not shunned, blamed and cast aside, and those people who take their medications responsibly should not have to suffer the punishment that is meant to be incurred on these people.
One of the Drs who is vehemently trying to block the sale of Zohydro stated that the moment this medication reaches the public, people will die, and he’s probably right. There are loads of irresponsible people who couldn’t be bothered to educate themselves about their meds, or who are so deep in their addiction that they don’t care, and it’s unfortunate that this is the case, but it’s also unfortunate that there are so many people out there who are suffering BECAUSE of those people. Because those people are going to do what they’re going to do and everyone else has to suffer the consequences. Enough is enough.
If the Feds really cared about saving people from their addictions, they’d invest in sound, scientifically proven substance abuse treatment programs and help them, and just maybe they could invest in safer methods of long-term pain management. Their token gestures of imposing strict rules and sanctions feel like airline security protocols. They all LOOK like they’re doing something to keep us safe, but it’s just smoke and mirrors, just going through the motions so they can say they’ve satisfied CYA and so everyone else feels a bit more secure, when really their methods are little more effective than doing nothing at all.

Chrysalis

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Living with MS, or any chronic illness, is a terrible thing. Yeah, that seems like it should be a given, but you just don’t realize how much changes, in your life, your outlook, your interactions with others, even down to who you are. It’s like undergoing this radical transformation, and they use a butterfly to signify MS, as if we’ve cracked the chrysalis and shone forth, a beautiful new being, when really, to me, it feels like I crawled into a shell and emerged a dowdy caterpillar. Once vibrant, once glowing, beautiful, able to dance on the wind, now I can only crawl.
I used to be strong, independent, and while I know I’ve struggled with this disease for much longer than I’ve been diagnosed with it and I can look back at my life and see its dirty fingerprints smudged across many of my failed accomplishments, I can still look back to the not so distant past and see just how much more full of life I was then! How I’ve become practically a stranger to myself and all those around me in such a very short time.
I try not to hide my weakness and emotion from my friends and loved ones anymore. I used to always suffer in silence and everyone thought I was okay even times when I really, really wasn’t. It’s difficult to open up, it leaves you vulnerable. The worst part is when you try to explain to someone how badly things are going and they just don’t understand, or they think you’re making excuses or blowing them off. And I don’t blame people for thinking that way about me now. They’ve gotten so used to me always bearing the lode and just keep on pushing through like nothing can stop me, but I just don’t have the emotional, or even physical, fortitude to do so anymore. I do blame myself to some extent, for everything. For not listening to my body when it needed a break, when it was telling me that there was something dreadfully wrong and I just didn’t want to hear it, and for not giving others an opportunity to support me when I needed it and now they all either think that I’m strong enough to deal or that my cries of weakness are either insincere or so out of character that I’m too changed for them to understand me anymore. I’m not the person I once was. I have to admit my faults, concede that I need assistance and surrender to the things that are now out of my control.
I feel like I should want to cry to the universe for having cursed me with such ill fate, and ill health. More than just MS, my body is coming apart at the seams and there’s nothing I can do to stop it. I’ve lived with chronic pain so long I don’t even remember what it feels like to not hurt, but any time I think about feeling angry, I just feel sad. I don’t have energy to waste on being angry. I have an extremely finite amount of energy to work with each day and I just can’t be bothered to expend it on misplaced rage.
I suppose in some ways I still do suffer in silence. While I try to make it known to others how I’m feeling, what’s happening with me, what it’s like to live my life, there’s really no way to make it clear, no way to make it understood and truly felt! I know there are people who love me, care about me, sympathize and even try to empathize, but they don’t understand. They can’t. Because I can’t explain it with words.
The best way I can describe it is that I live every day with a pall over my soul. No longer able to do any of the things I once loved or that brought me joy, not knowing who this new me is or how I fit into this new life where I’m no longer needed, an anchor to anyone who wishes to take me on, I spend each moment trying to ignore the physical pain, the emotional torture of being trapped in this body, and try very hard not to think of the future.