Scared

My wife and I had our quarterly pain follow up appointments with our PCP Wednesday afternoon. We always schedule two appointments ahead so that we don't have any problems getting in. When we reminded the receptionist that the appointment in three months wasn't adequate and she needed to schedule one in six months, she let slip the information that our doctor is leaving in four months. He has NO PLAN moving forward and hasn't even talked to any of the other providers in the office about taking on our cases. Every pain management office has refused our cases because they're medication management cases, which means that they can't make obscene money. The other doctors in the office have been extremely vocal about their objections regardless his management of our case. There are a few new providers that haven't chimed in, but two of them are PA-Cs (physician's assistants), which can't prescribe CIIs.

Steve

Promising Results for New Trigeminal Neuralgia Drug - National Pain Report

Promising Results for New Trigeminal Neuralgia Drug - National Pain Report
http://bit.ly/1uzi9kP

This is a novel compound, not a patent extension or reformulation. It's another sodium channel blocker, but it is being specifically developed for Trigeminal Neuralgia. I doubt this will be a game changer, but I do believe that having another treatment option has the potential to help many people.

Updated "About Me"

If anyone is interested, I've updated the "About Me" section


-----Updated Text-----
I apologize for not updating this part of my site for a while, but I've been fighting with the incompetent, ignorant, rude imbeciles who run CYS (Children & Youth Services) for over six months concerning my wife's and my need for prescription opioids. I've been told that they've never gone after people as hard as they've been going after us, that includes heroin addicts and crack whores. They routinely lie on court paperwork, leak confidential records, commit perjury, and they're constantly change their story & accusations. We've had to prove that we are ill enough to require opioids, but not too ill that we can't care for our daughter. Thankfully, our family doctor has not abandoned us. He knows how much these medications help us and he knows that our daughter is well taken care of. Thankfully, my state has never had a law allowing children to be taken from disabled parents and there are federal laws (i.e. Americans with Disabilities Act) that protect us, slightly. Unfortunately, we still have to prove that our medical conditions don't prevent us from caring for our daughter. Aside from our doctor, we have our almost useless lawyer who can't schedule a meeting, and a great subcontracted (not a CYS employee) parent educator who isn't afraid to tell the truth, even if it isn't popular and even if it contradicts her conclusions. We've also been complying with their ridiculous WEEKLY urine drug testing (costs taxpayers $100/test per person). I really wish that they'd switch to saliva testing, or better yet hair testing, which covers the last 3 months (more, if you're willing to pay for it) instead of the 2-3 days that UDT (urine drug testing) covers. I did the math once and found out that you could buy a VERY nice car with the money that they've spent harrassing us and violating our rights. Privacy is a thing of the past.

Pills for Breakfast: Five Things I Wish I Knew Sooner About Chronic Pain - NPR

Pills for Breakfast: Five Things I Wish I Knew Sooner About Chronic Pain- National Pain Report
http://bit.ly/1uVOIve

I'm sure we all have many things we'd line to add (feel free to list them in the comments below), but this it's a great article.

Steve

OT - FDA Approves New Opioid Addiction Treatment

FDA Approves New Opioid Addiction Treatment - National Pain Report
http://bit.ly/1oQMbPd

This isn't a new drug, just a new formulation of buprenorphine, but it's worth noting anyway.

Some of you may be wondering why I'm paying about an addiction treatment and it's a valid question. As pain patients, we are constantly grouped with addicts and we need to stay informed. Also, some PMs have prescribed Suboxone for pain, which is stupid because buprenorphine only treats pain with doses below 0.3mg/300mcg per day (Butrans is the only buprenorphine product capable of treating pain). The reason why doses above 2mg don't work for pain is that buprenorphine is a partial mu-opioid agonist (it acts like naloxone/Narcan and naltrexone at high doses and blocks opioids).

If we don't know the names of these addiction treatments, PMs can lie to to us.

SUBOXONE, BUNAVAIL, BUPRENEX, SUBUTEX, ZUBSOLV, AND ALL GENERIC BUPRENORPHINE PRODUCTS ARE FOR ADDICTION TREATMENT ONLY, DO NOT TAKE THEM FOR PAIN. Buprenorphine pills aren't for pain, only buprenorphine patches treat pain.

Steve

DEA official blames pharmacists, doctors for pain-med denials | Drug Topics

DEA official blames pharmacists, doctors for pain-med denials | Drug Topics
http://bit.ly/1kaNunT

GW Pharmaceuticals cannabinoid for cancer pain likely to have encouraging US market penetration, abuse possibility uncertain – experts

GW Pharmaceuticals cannabinoid for cancer pain likely to have encouraging US market penetration, abuse possibility uncertain – experts
http://ctcaho.pe/1lfsPUe

Although approval is limited to cancer related pain, Sativex should be made widely available due to a relatively low abuse potential for patients who don't get enough relief from opioids alone.

As a Marinol/dronabinol user, I'm excited about the possibility of a cannabinoid product without the intense high and unpredictable absorption of oral THC (Marinol). I can also verify the article's assertion that cannabinoids alone are inferior to cannabinoids added to to opioids.

I'm not sure if I'm the only one, but I'm extremely excited for this new, non-opioid (& opioid boosting) pain medication. I also find reports like this one reassuring, and a little exciting (I'm sure it's no big deal for patients in medical cannabis states, but it's important for those of us in Republican hell states, we have no cannabis, no Medicaid expansion, and we're desperate for a decent cannabinoid (oral dronabinol is terrible & the Marinol inhaler is stuck in clinical trials)).

Steve

Generic Celebrex Approved by FDA - National Pain Report

Generic Celebrex (celecoxib) Approved by FDA- National Pain Report
http://bit.ly/UhqsXD

While the prices will drop a little once these are available, the real price drop will occur in about six months, when multiple generics become available for each strength (Teva has exclusivity on 100mg, 200mg, & 400mg celecoxib & Mylan has exclusive marketing rights for 50mg celecoxib).

Of course, for insured patients, generics typically have a set generic copay and the only price drop they'll see is in their copay.

For uninsured patients, multiple generic manufacturers are a necessity because they have no price insulation.

Don't forget to ALWAYS use an Rx discount card for any prescription not covered by your insurance (if you have any).

Also, the Partnership for Prescription Assistance can help you find programs that offer free & discount drugs (my wife gets 30 Duragesic per month for $0.00, courtesy of Johnson & Johnson (owner of Janssen) thanks to PPARx.
http://pparx.org

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

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

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report
http://bit.ly/1unVrhi

This article, and the comments, really say it all. The anti-opioid propagandists are doing nothing to fight drug addiction, but their restrictions are destroying HUNDREDS OF MILLIONS of lives. Even the lucky few who have prescriptions are afraid to sneeze wrong or risk being cold turkeyed.

Summer Break

I haven't been paying much lately because my wife and I have had ridiculously busy weeks topped off with our daughter's kindergarten graduation yesterday (Tuesday). Her last day of school is tomorrow (or, rather, today... Thursday) and it's a half day (they get out at 10:45am).

While I'm extremely excited for her schedule to open up so that we can do more fun stuff (summer reading program, zoo trips, beach, museums, etcetera), I'm also worried about returning to chasing after her all day and all of the other things that go along with being a parent with chronic pain.

I've made rules for myself to prevent the typical cycle of over exertion & paying for that over exertion. I don't have them all written down, but they include (in no particular order):
1) TAKE BREAKS
2) "No" isn't a dirty word
3) Neither is "later"
4) kids don't need you to literally chase after them, just keep them within your eyesight when outside your home
5) Play dates are your friends (when you watch other people's kids, they really entertain your kid and you get free time when their parents return the favor)
6) don't afraid to ask for help
7) Kids will test you anytime things change, enforce discipline in June so July & August are smooth sailing
8) Don't forget your pain medication & don't skip doses, keeping your pain under control makes you a better parent
9) when you need a break, ask/tell your kid(s) to
10) DON'T BE SO JUDGEMENTAL/HARD ON YOURSELF
11) make time for yourself
12) make time for you & your significant other

Steve

Acetaminophen, Opioids, and Safety

Acetaminophen, Opioids, and Safety- Medscape
http://bit.ly/SpUhUq

It sickens me that hydrocodone/APAP 5/500 is still available. No one should have to cost between talking enough hydrocodone & not damaging their liver with acetaminophen/paracetamol/Tylenol (APAP). 500mg APAP gas not been shown to be superior to the safer 325mg APAP. Of course, they never added the acetaminophen for pain relief, it us there to prevent people from taking more hydrocodone that prescribed (doesn't work), which is why hydrocodone is CII, but hydrocodone/APAP is CIII (less restrictive).

Opinion: Bill Would (Have) Force(d) Drug Makers to Make Painkillers Tamper Resistant

Bill Would Force Drug Makers to Make Painkillers Tamper Resistant- National Pain Report
http://bit.ly/1kYSnVB

I know that this story is about two years old, but there is talk of reviving this bill in light of the Zohydro (non-tamper-resistant hydrocodone ER).

There are several problems with tamper-resistant opioids:
1) tamper-resistant opioids don't always work as well (or at all)- they're tested on healthy people who have an easier time absorbing them (the healthy people have to absorb them within a 30% tolerance)
2) they don't stop people from abusing them, but it does weaken the "high", which causes them to go to diacetylmorphine/diamorphine/heroin
3) they increase pharmacy prices, which makes it harder for pain patients to afford their medications
3b) increased pharmacy prices lead to increased street prices, which causes addicts (& sometimes even pain patients) to switch to heroin
3c) street heroin has unknown potency, unknown impurities, & poor oral absorption causing people to resort to intravenous injections

The ONLY way to reduce the harm caused by drug addiction is to switch from the law enforcement model to a treatment based model and to LEGALIZE ALL DRUGS (private prisons and the DEA would lose money, so they spend a small fortune fighting this). Legalization (& the drop in prices that this would cause) would eliminate the violence, crime, and disease (people inject heroin because it HA poor oral absorption & injecting is cheaper- same high from less drug; legal drugs also lack the dangerous impurities found in street heroin).

Rat Park

Rat Park Comic

Please check out the comic version of the Rat Park experiment, which shows that opioids are not the addictive demons that we've been told that they are.

http://bit.ly/ratpark

Be sure to check out the "Links/Articles" page on there right for more great resources, such as the Intractable Pain Patients' Handbook for Survival.

Steve
IntractablePainKills@gmail.com

Update

My wife and I had a hearing today and the judge sided with us. He told CYS that they had until August to close the case (or find some evidence).

Unfortunately, CYS going to continue with the extremely intrusive weekly urine testing (wasting $200 taxpayer dollars each). I feel so bad for the people who collect the smiled because it isn't their job and the guy wants to quit because if it. The stupidest part is that saliva testing would be just as useful and hair testing would be superior (hair testing goes back 2-4 months, but urine & saliva only go back 2-3 days). The worst part is that you have no choice. As a victim of sexual assault, being forced to allow someone to watch you urinate is not easy (thank God for Ativan & Xanax).

Anyway, back to the hearing, the judge was not happy about CYS's behavior and he wasn't buying any of their bullcrap. He could tell that we were not drug addicts and he could tell that we weren't invalids. Our "parent educator" really blew their bullshit out of the water, as did our doctor's testimony.

Anyway, thank you to everyone who prayed for us or kept us in your thoughts.

Steve

Miss Understood: The Ungrateful

Miss Understood: The Ungrateful - National Pain Report
http://bit.ly/1kli7qr

So many people around us take for granite their health, even with us as constant reminders. They make underhanded comments/remarks about being on disability/not having to work and how they have no free time because they actually work. If course what they fail to realize is that being in chronic pain, or having any chronic illness is like having fulltime job with erratic mandatory overtime.

Because there original post basically says everything that needs to be said, I'm going to leave you with that.

Steve

P.S. Please remember to click the red post you'll title (this post title says "Miss Understood: The Ungrateful" in bright red) everytime you read a post from the homepage. They're are three reasons that I ask for this:
1) It allows you to read the comments
2) that page allows you to add your own comments, which I HIGHLY encourage
3) It allows my Google Analytics to tell me how many times reach page is loaded & allows me to judge popularity of individual posts

Thank you

Pain-somnia (mini-post)

It's well past 5am & I have to get up at 7:25am, my pain induced insomnia (aka Pain-somnia) had kept me up all night, despite significant pharmacological treatment.  Unfortunately, with about two hours until I need to get up, there's nothing that I can take right now to help me sleep (even Zanaflex/tizanidine knocks me out  a bit longer than two hours). It is infuriating to feel so tired, but be unable to actually get any sleep.

I hope that you're all doing well, in minimal pain & getting plenty of sleep.

Steve

Sham Medical Devices & "All-Natural" Treatments

I recently responded to a question about NEUROVA, a copy of TENS unit that doesn't require a prescription (a HUGE red flag).

This led me to the decision to write a post about scams. Scammers are taking advantage of chronic pain patients, especially desperate pain patients, and the current climate regarding opioids.

The most common scam medical devices are "electric stimulators", which are a cross between those electric weight loss belts from the 90s that were supposed to give you abs without working out and TENS units, they bypass FDA clearance & approval by calling them "electronic massagers". These "TENS" units are not the same thing as the more expensive FDA approved TENS units that treat pain, especially neuropathy. Any legal TENS unit (the devices that can treat pain) require a prescription. Really, anything that is supposed to treat pain but isn't approved by the FDA or a similar international agency is suspect. Prescriptions are required for all legitimate longterm pain treatments with only a few exceptions (even FDA approved OTC treatments, like acetaminophen/paracetamol/Tylenol and Ibuprofen/Advil/Motrin aren't safe and effective longterm chronic pain treatments without doctor supervision (which is why the label tells you to seek medical care if you haven't improved after a few weeks). Acetaminophen/APAP is hepatotoxic and NSAIDs cause stomach irritation and bleeding.

Anyway, back on track...

When it comes to sham medical devices and "all-natural" treatments, the websites are great places to found clues, the wording frequently gives them away. Examples of Ted flags include:
* bad mouthing other treatments, especially opioids
* vague explanations of how it works
* not listing ingredients
* anything that's "proprietary" or "patented"- Remember patenting doesn't mean it works, it means they filled some paperwork. If they're advertising or bragging about the patent, they're scraping bottom for ways to con you out of your limited resources

If you want all natural, drug free treatments, research & purchase specific supplements, not "proprietary blends". You can save a fortune by purchasing these ingredients in bulk and putting them in capsules by yourself. Amazon sells everything you need, if you're interested.

Disclaimer: The links above are affiliate links, which means that if you click either link and subsequently make any Amazon purchased I, or rather my daughter's college fund, will receive up to 2% of the purchase price of eligible items.

Xartemis XR

I recently saw an advertisement for Xartemis XR. The new opioid is overpriced, completely unnecessary, and dangerous. Xartemis XR is essentially OxyContin with acetaminophen (INN: paracetamol), aka Tylenol, added. Tylenol alone kills or hospitalizes more people than all legal opioids combined. The US government has a campaign against the unnecessary use of acetaminophen because of the hepatotoxicity of acetaminophen, even when used within guidelines.

Daily intake of acetaminophen (APAP) should not exceed 2600-3000mg (THREE GRAMS) per day and it should NEVER be taken on a regular basis because even normal doses of acetaminophen can be toxic after two weeks.

Tylenol is added to Percocet & Vicodin for ONE REASON, as an abuse deterrent. Unfortunately, that doesn't work, people just get acetaminophen poisoning.


Extended release opioids are primarily intended for long term use by chronic pain patients, so who is this stupid product intended for?


Xartemis XR (oxycodone/APAP extended release) is a SCAM to extort more money from insurance companies and cash in on the current climate of opiophobic hysteria. If your doctor tries to prescribe this for you, ask them why they are giving you an expensive name brand drug that is inferior to the generic alternatives and push for something better.

Distinguishing Intractable Pain Patients from Drug Addicts

Distinguishing Intractable Pain Patients from Drug Addicts

By Joel S. Hochman, MD

http://bit.ly/IPvsAddict


Maybe one of you will better understand what appears to me to be nothing but an excuse to keep pain patients from getting their meds. It seems to me that fear of Diversion is a poor excuse for denying legitimate pain patients access to opioids, especially when nothing else works. The DEA has NO AUTHORITY to regulate medicine, they can only go after a doctor if (s)he prescribes "outside of medical practice", meaning that they were intentionally writing prescriptions that were not intended to treat a legitimate medical condition. Unfortunately, doctors don't decide which doctors are prescribing in the "due course of medical practice", and neither do any other medical professionals. DEA agents (glorified cops) and prosecutors make these decisions. They've scared doctors to the point where the doctors have started to lie to their patients in order to reduce the number of controlled substances (especially opioids) that they prescribe.

My biggest question is this....

If physicians can distinguish so easily between addicts and legitimate pain patients (which I do believe that they can), why is it that the DEA can't tell the difference between prescriptions to legitimate patients and prescriptions written to addicts?

-Steve