Mini-update

I felt bad for not updating much lately, so here we go. My doctor increased my clonidine patch to two clonidine 0.3mg/day patches (0.6mg/day). In short, it made me sleepy for two days, and extremely weak for a week. I'm recovering now, but I'm worried because my legs still hurt. On a positive note, it is helping with other symptoms, like my headaches.

Christmas was hard, but I'm surviving. I'm praying that Santa was a little late with my Christmas wish,  a pain doctor willing to manage my pain. Maybe, my future PM doctor is waiting for New Years and their New Years revolution to help more Medicare & Medicaid pain patients.

I wish everyone a happy, pain-free New Year

-Steve

P.S. Got a Canon EOS Rebel T3 digital SLR for Christmas. I haven't had a chance to play with it because it was just delivered yesterday thanks to FedEx taking THREE WEEKS to deliver it. I'm so excited! Remember, hobbies are great distraction techniques.

New Harvard paper slams FDA, says agency 'cannot be trusted'

New Harvard paper slams FDA, says agency 'cannot be trusted'
http://bit.ly/1eEj15e

This link was posted on a support group and I started to reply, but that turned into a rant, which sent off-topic. Essentially, it's about the problems with the FDA, and the system as a whole specifically as it relates to pain management, opiophobia, the epidemic of undertreated pain, and how money in medicine is a conflict of interest.

Sorry for the length, but, like I said, it just spilled onto the page. Yes, this has hurt me directly, but it's really hurt me the most indirectly. I've had to sit idly by as my wife, friends, and fellow support group CP/IP sufferers suffer needlessly from crippling diseases including EDS, Fibromyalgia, CFIDS/CFS/ME, IP, cancer pain, lupus, MCTD (mixed connective tissue disease), various autoimmune diseases, CPS (Central Pain Syndrome), Rheumatoid Arthritis, RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) and so much more.

This is emotional and disorganized, for that I apologize (I'm too sleep deprived to correct it).

~~~~~~~~~~~~~~~~~~~~~~~~~
I've known that we can't trust the FDA since Lyrica and Cymbalta were approved for pain. Yeah, they help some people, but they're statistically irrelevant. That, and their constant denials of efficacious drugs like Xyrem/sodium oxybate for Fibromyalgia (the Fibromyalgia formulation wouldn't be called Xyrem) and several pain medications despite superior evidence than many other approved drugs.  I'll eat my hat if they ever approved Sativex.

The DEA is in charge of diversion, the FDA is not supposed to deny drugs because of abuse potential, but they do it all the time.

Don't get me started on the untested abuse deterrent OxyContin, Opana ER, etcetera.

Plus, they don't make any generic manufacturer test the extended release mechanism on anything but the lowest dose, the test are statistical estimates. The worst part is that the FDA approved monographs parade these estimates as trial results.

The problem is our system, profit is put ahead of people and that's why we all suffer. If FDA approval was based on efficacy and adverse reactions, medicine was about helping patients, and not the almighty dollar, cannabis, Sativex, sodium oxybate for FM, 90 day sufentanil implants, diacetylmorphine/diamorphine, ibogaine, countless other medications would be readily available, and many, many other medications would never have been approved. Actiq would be available for any patient that can't get relief from pills, not just well insured cancer patients (although even we cancer patients can't get prescriptions anymore because writing opioids prescriptions isn't cost effective for doctors because of poor reimbursement and excessive paperwork).

Kids sbouldn't be given $20/pill (over $60,000/yr) antipsychotics for insomnia (melatonin, zolpidem, benzodiazepines, barbiturates, Rozerem, all more effective, safer, and cheaper), behavioral issues (discipline), autism, Asperger's Syndrome (TALK to your children and work with them, you can overcome it without toxic antipsychotics, and in many cases, no drugs at all; insomnia must be treated, but many respond to melatonin).

The FDA is owned by the drug companies, their profits, not our best interests are at heart.

Occasionally, Opiophobia or similar irrational fears of abuse overcome profits, but it's extremely rare. Usually, it's profits.

Ibogaine is more effective that methadone or buprenorphine, but out only requires one treatment and can't be patented.

Methadone is $10-15/month, but it can only be used to treat addicts in expensive, inconvenient clinics. They could allow doctors to prescribe it for addiction like they do for pain management, but that's not in Suboxone's best interests. Sparse methadone clinics, daily visits, high costs, limited hours, and overall inconvenience push people from methadone to Suboxone. Many of my friends with CP/IP have faked addiction to get methadone and/or to get buprenorphine (never at the same time) when their states effectively banned effective pain management, I've researched this for many friends in Florida, Texas, Washington, Oregon, and several other opiophobic states.

AVERAGE monthly costs (excluding initial methadone/Suboxone intake fees; $150-300+)
methadone Rx $10-15
Methadone clinic $60*-600
30 day Suboxone $600-900
*$60 are state funded clinics and not really average

Legalized Cannabis is a drug company's worst nightmare, effective, safe, and NATURAL (no patent). Not only that, but people can GROW IT THEMSELVES, no need for drug companies at all. Even generics make them big money.

Methadone is a great pain drug, but terriers prescriber education. Also, when used for pain management, it only lasts 6-8 hours. They could make a once daily version, but the drug is so cheap that insurance companies aren't going to pay 20-50x more for methadone ER and drug companies aren't going to sell methadone ER for anywhere near its current price
*~Breakthrough Med Pricing~*
135 methadone 10 mg (45mg/day)<$12 (cash), ~$6 (Medicare D)
180 oxycodone 30mg (30mg 6x/day) ~$300 (cash), ~$75 (Medicaid rate)
1080 oxymorphone 10mg (20mg 6x/day) ~$11,000/90 day (cash), ~$6000/month (Medicare)
270 oxymorphone 10mg (15mg 6/day) ~$3000/month (cash), ~$1600 (Medicare)
Is it surprising that OxyContin and Opana ER are pushed by drug companies? Those are GENERIC prices. Why bother with ER methadone, especially when it's exclusivity would be much more limited than OxyContin.

*Wholesale prices per pill*
Oxymorphone 10mg $5.65
Opana 5mg $3.60
Opana 10mg $6.53
Oxymorphone ER 5mg $1.74
Oxymorphone ER 40mg $11.13
Opana ER 5mg $2.39
Opana ER 40mg $15.31

Oxycodone 30mg $0.36-1.45
OxyContin 30mg $6.93
OxyContin 80mg $16.33

Morphine 30mg $0.23
Kadian 30mg $6.37
Kadian 200mg $43.01
Avinza (morphine) 30mg  $5.77
Avinza (morphine) 120mg $19.89
MSContin 30mg $4.04
MSContin 200mg $21.39
Morphine Sulfate ER 30mg $0.82-1.70
Morphine sulfate ER 200mg $3.95-8.99

Methadone 5mg $0.0852-0.0868
Methadone 10mg $0.1410-0.1920
Methadone 40mg solutab $0.2976-0.3316 (methadone clinics only)
Dolophine 10mg $0.2026
Methadose 40mg solutab $0.3300

Fentora 0.6mg $82.24

Methadone ER isn't going to happen in our system.

Prialt/ziconotide intrathecal (cone snail neurotoxin) was only approved to discourage abuse proof intrathecal morphine. They actually put a neurotoxin closer to your spine than an epidural. It causes psychosis and death in way too many patients, including several of my friends.

Actiq was $1-2/dose and extremely effective, but the opiophobic FDA refused to approve it for over 20 indications. They shut the company up by going from moderate to severe BTP (breakthrough pain) to the incredibly narrow severe breakthrough cancer pain. This indication got it to the market and physician's wrote prescriptions off-label for desperate patients who had tried everything else. Unfortunately, the prove started to rise. Eventually, the price got high enough to cancer insurance companies to require prior authorization and limit coverage to cancer patients, effectively banning off-label use. This caused further prove increases. GENERIC OTFC (Oral Transmucosal Fentanyl Citrate) is now $20-80/lozenge and patients are limited to four lozenges (2 flares per day). My prescription was $60/dose, $240/day, $7200/month, & $21,600/90 day Rx. Thankfully covered by Medicare (they negotiated ~$6,000/month ~18,000/90 day Rx). Unfortunately, the FDA furthered the EPIDEMIC of undertreatment and underprescribing of opioids by instituting an extremely overzealous class-wide REMS on TIRF (transmucosal immediate release fentanyl; Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral). This seems like just Opiophobia, but there is also a financial motive. While it would seem that restricting such an extensive drug would be detrimental,  a second generic manufacturer finally broke the duopoly, which would have allowed competition if demand hadn't been decimated. Also, despite fentanyl lozenges being extremely high profit thanks to fentanyl citrate being DIRT cheap, even more money can be made with interventional pain management, antipsychotics, antidepressants, anti-epileptic mood stabilizers, and overpriced NSAIDs, like the cox2 inhibitor, Celebrex.

I can take an effective dose of opioids, or I can get less relief and more side effects by taking a conservative dose of opioids plus OVER a DOZEN non-opioids.

Last, but not least, the lack of FDA approved treatment for CFIDS, despite clear evidence that Rituxan/rituximab and Ampligen are both effective. Unfortunately, they're expensive, very expensive. Antidepressants are cheap and so many people believe the CDC propaganda. CFIDS research funding has been frozen for 20 years. In order for it to have kept up with inflation alone, it should have doubled.

The US clinical trials for CFS/ME are less conclusive than they should be because the FDA requires the use of there CDC CFS criteria instead of the more specific ME criteria and too many misdiagnosed patients end up trials. The FDA uses this as an excuse to block approval. If you exclude the patients that don't resound at all, the drugs are miraculous for the remaining patients.

The real reason that that hasn't been approved is two-fold.
1) it treats CFIDS as a physical illness
2) Ampligen is owned by a tiny Philadelphia biopharma company, Hemispherx. They don't have the money to have have the FDA in their pockets and aren't rich enough to get away with bribery

Posted 12/25/2013 08:57:00 AM
Edited March 16, 2014 7:42 am
Edited March 16, 2014 6:05 pm

Neurontin ‘Snake Oil’ Lawsuit Upheld - National Pain Report

Neurontin ‘Snake Oil’ Lawsuit Upheld - National Pain Report
http://bit.ly/JfoJNd

Clonidine patch

I received my first box of clonidine patches today. I opened the box to find 4 clonidine 0.3mg/24hr patches and 4 foam overlays (personally, I prefer occlusive dressings, but these work alright).

I placed roughly a third of a patch out of an abundance of caution and in seven days, I'll use the roughly 2/3 patch, then go to full patches.

When I started the pills, I had very little side effects, but I'm experiencing significantly more sedation than previously. Despite a reasonable amount of familiarity with this chemical, I'm a little freaked out.

Wish me luck...

Note: on clonidine for neuropathy & headaches

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

Wish me luck- PCP & IP

It's 9:40am and my wife has yet to sleep, and my sleep was highly fragmented thanks to her efforts to clean and organize a lot of our stuff. We're both going to be dragging when we go to my "next day" appointment later this afternoon. My pain has been out of control and, despite all of knowledge and self education, I have no idea how I'm going to convince my PCP that I'm in need of additional help.

While I both sympathize and empathize with the uncomfortable position that my PCP is in, I NEED him to help me until (unless) he van get me an intrathecal pump management physician, PM, and/or palliative care specialist.

I'm mainly asking for an increase and change in form of my clonidine (1mg pill 2/day --> clonidine patch 3mg/day), but he and I both know that my current dose of fentanyl patches has been inadequate for YEARS and he always gets uncomfortable whenever I mention poor pain control. He knows that I need to be back on low dose methadone and Actiq. My pain is getting worse and the dose of medication that's always been inadequate is extremely inadequate (even without the effects of tolerance).

Honestly, I'm extremely depressed and unsure of why I'm still fighting to live.

Sorry for the depressing post, I just needed to vent.

-Steve

Palliative Care, the Treatment That Respects Pain - NYTimes.com

Palliative Care, the Treatment That Respects Pain
http://nyti.ms/1bGDUdX

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