Well.
It's been two weeks since my second infusion of Rituxan, and who'd a thunk? No pain. Well, almost no pain. Occasional twinges, yes. Momentary annoyances. Difficult mornings getting going. But nothing like the situation just a few weeks ago when I dreaded weekends because I would almost certainly start a flare on Friday which wouldn't fade away until the following Wednesday.
I would be lucky to have one or two "good days" a week. Yikes.
But now? I'm far from a cure -- in fact, they say there isn't one-- but it is possible I could go into remission (with medication), and if I do, I'll probably need infusions every six months for some time to come. But for now, I'm grateful to be almost completely pain free, even if it's only temporary.
During all this RA business -- been going on for two years now (longer when I think back to early symptoms) -- I've had no pain relief medication (except what I had on hand from previous sciatica episodes).
I thought it was odd that no matter how much pain I was in my doctors never prescribed pain medication of any kind. At one point, early on, I was self medicating with Aleve which initially provided some relief, then it didn't. I increased the dosage again and again, until I was up to 1600mg a day or maybe more, and still very little or no relief. Doctor said, "Whoa! Stop! That's too much!"
Well, what will you give me for pain relief? Eh?
The answer was steroids. Prednisone (which I tolerate pretty well; some people don't). High doses tapering off to low doses. A maintenance dose until other medications kick in.
No specific pain medications at all.
The other medications might work for a time -- a few weeks or months -- but then not. I went through a half dozen or more meds trying this and that (I didn't keep track) to see what worked. Nothing did for long.
At one point, three-four months ago, I had tapered the prednisone to 7.5mg a day, the lowest dose I'd taken for over a year. That's when things started going haywire, and I was facing weekly flares. Doctor said increase prednisone dosage: I took up to 40mg a day with only partial effectiveness. This went on for months. The only relief offered was higher doses of prednisone, and when I pointed out even that wasn't working, it dawned on my rheumatologist that something else was called for at least as a bridge until the Rituxan could work.
And so, for the first time in years, I was prescribed an opioid (Tylenol 3) -- which I haven't had to take due to the apparent effectiveness of the second Rituxan infusion. If I do have a flare, however, and the Tylenol 3 doesn't work, doctor is prepared to prescribe (drum roll) Oxycontin.
She also prescribed a stronger version of prednisone in case of otherwise uncontrolled flares.
So far, however, I haven't had to take either one.
Whoo.
I know there is currently a hysteria over opioid addiction among lower class whites, largely due -- they say -- to overprescription of pain relievers among the Lower Orders. So there are any number of restrictions on doctor prescriptions, and I had to jump through all kinds of hoops to get what I got.
And I haven't taken it. I haven't even opened the package.
If the Rituxan works, I won't, either.
I will keep it on hand, however, just in case.
You know what? Chronic pain is a terrible and debilitating thing. I've experienced my share, and I know others who have had it much worse than me. Doctors face a serious problem in prescribing for pain relief -- except, apparently, in certain ruralish white enclaves where anything goes -- because of the opioid hysterics.
I assume that's why nothing was provided to me specifically for pain relief for years.
Of course, if you're among the High and the Mighty, there are no problems at all in getting what you need to control your pain -- or anything else.
None at all.
So...
We'll see how this goes.
So far, so good.
Showing posts with label opioids. Show all posts
Showing posts with label opioids. Show all posts
Monday, June 5, 2017
Thursday, April 6, 2017
Why Wypipo Are Dying
I've been reading this deeply flawed Brookings study (60 pg pdf) on morbidity and mortality in the 21st Century. It has so many problems it's almost useless, but it nicely fits the narrative of suffering, despairing rural white folks -- who elected Trump in their misery -- that it's become something of a go-to "proof" that white folks are dying in their multitudes (ostensibly from despair at their future-less lives.)
The statistics do not support the conclusion. The simple facts don't. But don't let that stand in the way of a good narrative.
The primary issue for the authors is the increase in opioid addiction leading to overdose deaths in rural America -- even though it is not the leading cause of death, but so what. It involves drugs, and everyone knows drugs are eeeeeevil.
There have been any number of reports that parts of rural (white) America have been flooded with prescription opioid pain killers; millions and millions of doses sent to pharmacies in areas that have populations in the tens of thousands if that. Surprisingly, these areas then experience a spike in opioid addiction and overdose death. How interesting.
The authors of the Brookings study, however, are careful to hold harmless the prescription drug manufacturers, pharmacies and doctors in those areas. The problems associated with opioids are entirely on the shoulders of the patients who, apparently, falsely claim to be in pain in order to procure a scrip, then trade the meds among themselves. Or something.
It really doesn't make sense given the already restricted access to opioids and other narcotic pain medications. And at least 9 times out of 10, patients presenting with pain are in pain, not "despair," real, physical pain, and the medication is intended and used for pain relief.
Yet the narrative says, "No, no! These people are not in physical pain. They suffer from Wypipo-despair!"
OK.
Interestingly, in other drug abuse frenzies (the crack epidemic, the crank era) nobody cared a whit about the why of such drug use. They wanted to see the users and their unpleasantness eradicated forthwith.
And so it was with the ever-present War on (some) Drugs and (some) Drug Users.
Now, though, the issue is Salt of the Earth Wypipo in rural communities who voted for Trump and all of a sudden, treatment, love and compassion for the despairing victim-users is the general attitude toward the Unfortunates.
No war on these people and their drug use at all. No sirree.
Except.
Well, there is an exception. What is being proposed and in some cases enacted are further tightening of the restrictions on the prescription and dispensing of opioid pain medications.
In other words, the point is not to "help" the victims -- poor, rural Wypipo that they are -- the point is to make it difficult or impossible for people in pain to legally obtain opioids for pain relief. There. That should solve the problem, right?
Jeebus.
In some areas it is already nearly impossible for people in pain to legally obtain opioid or other narcotic pain relief medication because doctors are terrified of the DEA and refuse to prescribe it -- or any effective medication for pain.
They refuse outright and patients are left on their own to find medications to deal with their pain -- or just live with it. Too bad, so sad. The proposed additional restrictions and prohibitions will simply mean that more people in pain will be refused medications to alleviate their suffering.
I think that's the point of the narrative. "Suffering is good for the soul," right?
Whatever else Our Rulers want to do, they want to impose sufficient suffering on the Rabble to keep them in line, and they want to punish anyone who gets out of line.
That's Doctrine.
Of course I have a personal interest in these things. Until recently, pain associated with my condition was fairly well controlled without specific medications for pain. But about two weeks ago, I started having what they call a "flare," something that hasn't happened since before I started treatment, and it lasted a good long time, despite attempts to mitigate/control the pain with steroids. I received no pain medication at all.
Steroids alone were supposed to be enough to control the pain, but they weren't. What was happening was that generalized joint pain would concentrate in one joint or pair of joints and at one point I could not walk because of the intensity of pain. Standard pain killers like Aleve had no effect.
As it happened, I had some left-over pain medication from a previous bout of sciatica, and sure enough, within minutes of taking it, the pain was controlled.
But it's an opioid, and it was never offered by my doctor -- nothing was -- for pain relief, only the steroids, which did not control the concentrated joint pain that made basic functioning impossible.
According to what I'm being told, my condition has "evolved" into a new and more serious phase that requires more aggressive treatment with stronger immunosuppressants an other drugs that can have serious or fatal side effects. But that's how it goes. I'm not as concerned about that as I am about being stuck in a painful situation (another "flare" for example) without access to effective relief.
Given the urge of policy-makers to further restrict or prohibit the use of opioids for pain relief, I wouldn't be surprised...
[This Politico article explores some of the criticism of the Brookings study. Still, the general thrust of it is accepted.]
The statistics do not support the conclusion. The simple facts don't. But don't let that stand in the way of a good narrative.
The primary issue for the authors is the increase in opioid addiction leading to overdose deaths in rural America -- even though it is not the leading cause of death, but so what. It involves drugs, and everyone knows drugs are eeeeeevil.
There have been any number of reports that parts of rural (white) America have been flooded with prescription opioid pain killers; millions and millions of doses sent to pharmacies in areas that have populations in the tens of thousands if that. Surprisingly, these areas then experience a spike in opioid addiction and overdose death. How interesting.
The authors of the Brookings study, however, are careful to hold harmless the prescription drug manufacturers, pharmacies and doctors in those areas. The problems associated with opioids are entirely on the shoulders of the patients who, apparently, falsely claim to be in pain in order to procure a scrip, then trade the meds among themselves. Or something.
It really doesn't make sense given the already restricted access to opioids and other narcotic pain medications. And at least 9 times out of 10, patients presenting with pain are in pain, not "despair," real, physical pain, and the medication is intended and used for pain relief.
Yet the narrative says, "No, no! These people are not in physical pain. They suffer from Wypipo-despair!"
OK.
Interestingly, in other drug abuse frenzies (the crack epidemic, the crank era) nobody cared a whit about the why of such drug use. They wanted to see the users and their unpleasantness eradicated forthwith.
And so it was with the ever-present War on (some) Drugs and (some) Drug Users.
Now, though, the issue is Salt of the Earth Wypipo in rural communities who voted for Trump and all of a sudden, treatment, love and compassion for the despairing victim-users is the general attitude toward the Unfortunates.
No war on these people and their drug use at all. No sirree.
Except.
Well, there is an exception. What is being proposed and in some cases enacted are further tightening of the restrictions on the prescription and dispensing of opioid pain medications.
In other words, the point is not to "help" the victims -- poor, rural Wypipo that they are -- the point is to make it difficult or impossible for people in pain to legally obtain opioids for pain relief. There. That should solve the problem, right?
Jeebus.
In some areas it is already nearly impossible for people in pain to legally obtain opioid or other narcotic pain relief medication because doctors are terrified of the DEA and refuse to prescribe it -- or any effective medication for pain.
They refuse outright and patients are left on their own to find medications to deal with their pain -- or just live with it. Too bad, so sad. The proposed additional restrictions and prohibitions will simply mean that more people in pain will be refused medications to alleviate their suffering.
I think that's the point of the narrative. "Suffering is good for the soul," right?
Whatever else Our Rulers want to do, they want to impose sufficient suffering on the Rabble to keep them in line, and they want to punish anyone who gets out of line.
That's Doctrine.
Of course I have a personal interest in these things. Until recently, pain associated with my condition was fairly well controlled without specific medications for pain. But about two weeks ago, I started having what they call a "flare," something that hasn't happened since before I started treatment, and it lasted a good long time, despite attempts to mitigate/control the pain with steroids. I received no pain medication at all.
Steroids alone were supposed to be enough to control the pain, but they weren't. What was happening was that generalized joint pain would concentrate in one joint or pair of joints and at one point I could not walk because of the intensity of pain. Standard pain killers like Aleve had no effect.
As it happened, I had some left-over pain medication from a previous bout of sciatica, and sure enough, within minutes of taking it, the pain was controlled.
But it's an opioid, and it was never offered by my doctor -- nothing was -- for pain relief, only the steroids, which did not control the concentrated joint pain that made basic functioning impossible.
According to what I'm being told, my condition has "evolved" into a new and more serious phase that requires more aggressive treatment with stronger immunosuppressants an other drugs that can have serious or fatal side effects. But that's how it goes. I'm not as concerned about that as I am about being stuck in a painful situation (another "flare" for example) without access to effective relief.
Given the urge of policy-makers to further restrict or prohibit the use of opioids for pain relief, I wouldn't be surprised...
[This Politico article explores some of the criticism of the Brookings study. Still, the general thrust of it is accepted.]
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