10% effective, 7.7 billion dollars (Fibromyalgia Blockbuster Drugs)

Fibromyalgia Drugs: Successes or Failures? - National Pain Report
http://bit.ly/1gRHsrI

Why are patients shut out of the debate over prescription pain medicine? - The Washington Post

Why are patients shut out of the debate over prescription pain medicine?- The Washington Post
http://wapo.st/1j9NRo1

This article really says it all, well maybe not everything, but they hit the major points. Please read it in its entirety

Cannabis Has Been Studied More Than Many FDA Approved Pharmaceuticals

Cannabis Has Been Studied More Than Many FDA Approved Pharmaceuticals | High Times
http://bit.ly/1mHakv3

Living with Pain: The DEA’s War on Pain Patients Reaches California | American News Report

Living with Pain: The DEA’s War on Pain Patients Reaches California | American News Report

http://bit.ly/1f3IJuy

"The DEA is using a meat cleaver when a scalpel would do. To simply cut off pharmacies without first determining the nature of the customers being served suggests something more sinister."

Dear Stupid (doctors)

Pills for Breakfast: Dear Stupid - National Pain Report
http://bit.ly/1ji4mN4

Doctors are stupid, especially the ones at Mayo, UPenn, Hopkins, Cleveland Clinic, and all of the other "must go" hospitals. I was never treated worse than when I went to Johns Hopkins (Baltimore, MD), UPenn (Philadelphia, PA), and Milton S Hershey Medical Center (Hershey, PA). They give up on us the second we get complicated.

FDA Warns about Epidurals

FDA Warns about Epidurals - National Pain Report
http://bit.ly/1iq0mdA

I can't tell you how many people were FORCED into these injections so that crooked doctors could make big money from insurance and avoid prescribing opioids. This NEVER would have been an issue if it wasn't for a combination a Opiophobia and greed/for profit healthcare.

10% effective, 7.7 billion dollars (Fibromyalgia Blockbuster Drugs)

Fibromyalgia Drugs: Successes or Failures? - National Pain Report
http://bit.ly/1gRHsrI

Naloxone Part 2

To clarify... The government is advocating it's use in pain patients who are BELIEVED to be in overdose. The problem is that most people can't tell an overdose from fatigue or the flu. Intractable pain patients on opioids are usually opioid tolerant and naloxone/Narcan/Evzio causes abrupt withdrawal. In a patient who actually needs opioids (intractable pain patient, not drug addict), this abrupt withdrawal can trigger a heart attack.

This is unnecessary because...
If pain patient (or addict) overdoses, the symptom is respiratory depression, which can be overcome with oxygen, BiPAP, and/or CPR. This product is intended to reverse believed overdose while waiting for an ambulance, but CPR has been fine for years.

Naloxone/Narcan/Evzio reverses the opioids, which is fine for an opioid-naive patient, but this device is only for opioid tolerance patients.

With so many family members not understanding us and many being called druggies, would you really want them wielding an opioid blocker? I can easily see easy access to naloxone leading to pain patients (& addicts) being forcefully injected with naloxone against their will to "prove" to them that they're an addict (those people never understand the different being addiction and tolerance & physical dependence).

This product should only be prescribed directly to the addict or pain patient, not "concerned family members" WITH THEIR PERMISSION. It should be treated like Antabuse (giving to someone without permission is forbidden and legally considered poisoning, and carries a black box warning).

Steve

Massachusetts Ban on Zohydro a Slippery Slope - National Pain Report

Massachusetts Ban on Zohydro a Slippery Slope - National Pain Report

http://bit.ly/1fMfcGq

17,000 DEATHS - GOP's Obamacare spite means death toll for red states - Daily Kos

Daily Kos :: GOP's Obamacare spite means death toll for red states

http://bit.ly/1gUFjjJ

"Yet as damaging as that uncertainty and chaos has been, the Republican Party's scorched-earth opposition to Obamacare is producing something far worse: a body count. That's not hyperbole, but a grim reality. Due to what might be the greatest act of political spite in modern American history, Republicans will needlessly leave millions of people uninsured, many hospitals on the edge of financial ruin and thousands of Americans dead, mostly in the states the GOP itself controls."

17,000 deaths from rejected Medicaid expansion

PCP

Unfortunately, I didn't feel up to updating you guys after my appointment, but better late than never.

As always, my doctor was kind and logical (even more so that I expected) while, unfortunately, medically impotent.

I informed him that the oxymorphone was effective for the minor flares, but that my around the clock pain is still out of control. I didn't even ask for a increase in Duragesic, I knew that I wasn't going to get it, so I purposefully dismissed the possibility. Instead, I asked for an increase in clonidine and a switch to the patches (1mg pill only lasts me 4 hours each). Since I reported the lack of side effects and my blood pressure was still high enough, my doctor put me on 0.3mg/day clonidine patch, but I highly doubt that it will work at that dose. However, I can't say for sure because haven't tried our yet(pharmacy had to order it and now I'm waiting for ride to pick it up).

I informed him that a recent urine test of mine was positive for THC & 0.48ng/ml hydromorphone. However, my test was false negative for lorazepam, dextroamphetamine/Dexedrine (Like Adderall), and oxymorphone (among others). I had also informed him that my wife tested negative for everything, despite being on oxycodone, oxymorphone, fentanyl, alprazolam, Adderall, and several others. I semi-frantically attempted to explain that I was baffled as to how it was possible that hydromorphone was in my urine and explained my theories and why they're unlikely.

The first thing that he asked me was whether or not they did confirmatory testing (a strong sign of a good doctor), but I informed him that the original test was GC/MS (standard confirmatory testing method), although I'm unsure if it was ever run a second time.

He was at least somewhat concerned about the negative testing given our ample doses of several of those medications.

He was also amazed that the lab didn't know that Marinol (synthetic THC) causes a positive test for THC, even under GC/MS. They apparently don't know the difference between Marinol/dronabinol and "spice", aka K2.

I was extremely worried about my doctor's reaction to the above information because he isn't very comfortable with my need for high doses. I was also worried because he is also a Suboxone doctor and seeing multiple addicts every day tends to skew your point of view, but our PCP acted sanely, rationally, and even respectfully.

I had also informed him that I switched from ranitidine/Zantac to Tagamet/cimetidine a while back and needed a prescription for that so that my insurance would cover it and I could stop purchasing it OTC. Unfortunately, it is a strong CYP450 3A4 inhibitor which would boost the efficacy of several medications that I'm on by slowing the metabolism. Despite informing him that I've been safely taking cimetidine/Tagamet for months and months, he wasn't comfortable prescribing it, so I'm going to try famotidine/Pepcid, again.

Despite the lack of opioids and trying a failed drug, again, the appointment went better than I had expected and I was reasonably satisfied.

As a checked out at the front desk, I asked to talk to the head of Managed Care (referrals department), if she wasn't busy. Thankfully, she want and I was able to handle a lot of things and gain some piece of mind. Unfortunately, she informed me that I'm out of options for pain management and she's unable to try again without risking the office's relationship with this offices (they get blacklisted).

You may be asking why I am writing all of this, after all this is an everyday appointment. While these little appointments may seem insignificant, they are the threads that make up the fabric of pain management and living with pain care.

While on a mini-rant of frustration, she (head of managed care, who I've known since childhood) attempted to defend our PCP for his inadequate treatment regiment by reminding me that he puts his medical license at risk and he's already pushing it with what he's prescribing now. Of course, I already know this and understand it all too well, but it is well worth remembering that it takes a very strong person to stand up even to the extend that or physician has and their livelihoods are at risk by helping us. The medical establishment as a whole needs to fight this so that doctors are not required choose between breaking their oath by letting their patients suffer and risking their medical license (and even freedom) because they prescribed longterm, and high dose, opioids to pain patients.

Although we need to fight for reform, we must also be appreciative of, and thank, the physicians who do risk their livelihoods to prescribe the medications that give us a life worth living, even off they aren't prescribing enough. I'm not saying kiss their @$$ for prescribing tramadol/Ultram/Ryzolt (antidepressant), Nucynta/tapentadol (antidepressant), codeine, hydrocodone (weak opioid), Percocet (oxycodone paired worth poisonous acetaminophen), or low doses of morphine, oxycodone, oxymorphone, hydromorphone, or even fentanyl, but when they prescribe inadequate, but substantial doses of opioids, they deserve our gratitude.

My doctor irritated me when he refused to prescribe low dose methadone or continue to prescribe Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral (immediate release fentanyl), but I owe him thanks for prescribing high dose Duragesic and moderately high dose oxycodone, and now oxymorphone. One of the more overzealous PMs that he sent me to told him to take me off potential drugs of abuse like lorazepam (seizures, anxiety, muscle spasms, pain, nausea, insomnia), dronabinol (nausea, vomiting, & wasting), Duragesic, OTFC (generic Actiq), oxycodone, and WELLBUTRIN XL (antidepressant). Thankfully, he completely discarded his advise.

Good luck to everyone out there and try not to overdo it this holiday season. Remember, Christmas is special without you overdoing it. Your friends and family need you healthy, the cookies, cleaning, cooking, and other baking van wait or be completely skipped.

Steve

Despicable- California GOP creates fake health care website to discourage constituents from obtaining insurance

Daily Kos :: California GOP creates fake health care website to discourage constituents from obtaining insurance
http://bit.ly/1eMeHg4

What more can I add?...
Got forbid they protect themselves and keep health care costs down. God forbid even a penny of healthy policy holders premiums goes to us unhealthy "leeches".

As a pain (& cancer) patient and a citizen, I find this the lowest of low. Disability is not a crime, or even a choice.

Steve

OT- Banned4Life Project

The Banned4Life Project
www.banned4life.org

Even the Red Cross doesn't believe that a lifetime ban on blood donation for gay men is warranted, but the FDA refuses to look at the facts.

My best friend from middle school is gay and HIV+. He obviously should be banned from giving blood until we find a cure, but not every gay man is at high risk of HIV+, it's all about behavior and a more complex and accurate set of questions should determine deferral length or ban. Monogamous homosexual men are considered by the FDA to be a higher risk than heterosexual men who regularly engages in unprotected sex with multiple prostitutes.

The risks you take and the threat that you pose should determine your ability to donate DESPERATELY needed blood.

As someone who might need blood one day, it scares me that stereotypes will determine the quality of blood that I get, instead of the actual risk.

The petition:
Banned for Life- Causes
https://www.causes.com/posts/833577
http://bit.ly/B4Lpetition

This says it all...

Although this is specifically about preventative care, ALL EFFECTIVE TREATMENTS HURT RETURN BUSINESS, especially pain care (thank for profit medicine for a lack of effective treatments, especially opioids). Why stabilize a patient when return business would be threatened?

 Yes, this is cynical and not every doctor is this heartless, but many are (consciously or subconsciously).

My PCP is one of those who has a heart. He could make a lot more with useless antidepressants, anti-epileptics, and antipsychotics (I've tried dozens already) and the countless follow up appointments that dose changes and new medications require. He could make even more with injections. As a PCP, he can't do procedures, but he could send me to yet another useless (useless for me) interventional pain management consultation (which his medical group now has in house) and REALLY milk my insurance. Unfortunately, many doctors don't care about their patients' wellbeing as much as mine does. Not only do opioids and other safer treatments (pretty much anything except surgery and procedures; generally, the higher the cost, the greater the risk) less costly, but prescriptions for controlled substances (opioids, Lyrica, benzodiazepines, etcetera) are significantly more work for the doctor and carry additional risk for them because of the overzealous DEA. 

If you're lucky enough to have a doctor willing to prescribe opioids when necessary, THANK THEM & appreciate  them because they are rare.

Think about your doctor's motives.

Healthcare is NOT a free market, we don't choose to get sick, we don't even choose our treatments, our doctors do. Methadone is the most cost effective pain treatment, but most most doctors refuse to even consider prescribing it (even when you beg). 

Paying for it

I spent a few hours volunteering at the local animal shelter yesterday. I WAY over did it yesterday, and now the nerves in my legs are on fire. I can practically trace the nerves because they're so inflamed. I missed our weekly outing with our daughter (museums, historical society, hikes, parks, carnival, Army war college, etcetera) this morning. This afternoon, I didn't get to go to the animal shelter (my wife still went and helped for two hours). And now, I'm missing out on going out with some of the people at the shelter (my wife got both of us invited while  I slept and she volunteered).

I'm not sure which is more frustrating
1) constant, unrelenting pain
2) inconceivable BTP (breakthrough pain) flares
3) missing out on everything (family stuff, social stuff)
4) NO ONE gets it

I think the worst part of this is that none of this is necessary! I'm in pain for no legitimate reason. My pain was under control (bad, but under control) with low dose methadone, Actiq, Duragesic, and oxymorphone. My pain was virtually eliminated with 3mg/day intrathecal morphine. I feel like the one sane person in a world of crazy. I feel like I'm screaming and no one is listening. I'm in excruciating pain, there's medication that can fix it, I'm insured, my insurance will cover Duragesic, Actiq, methadone, oxymorphone, AND an intrathecal pump, I have NO risk factors (including NO family history) for abuse, I don't smoke, I don't drink, I've never abused my medication, I've never been high, I have cancer, I'm dying, I've never run out of meds or needed an early refill, I've tried EVERY non-drug treatment recommended, I've tried every non-opioid, I've tried every single weaker opioid, I'm beyond compliant, I keep myself informed (as instructed, although it's being used against me now)... and, STILL, I'm treated like shit and get inadequate treatment.

How does this make any sense to anyone?

Steve

Update

I spent several hours at the park with my daughter yesterday, I risky over did it. I'm in excruciating pain and I can't sleep even with my nausea medications. I used another of my severely limited supply of Lidoderm (my insurance gives me crap about opioids, but doesn't covert Lidoderm without a shingles diagnosis, what a racket).

On the plus side, re-watching Mythbusters and remembering some neat facts. Mythbusters is a really good distraction.

Mini rant: pharmacy can't get fentanyl patches in stock and we're eventually going to be stuck with a new brand that may or may not be useable. I'm so sick of artificial stuff shortages thanks to the War on Drugs!

Steve
IntractablePainKills@gmail.com