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

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

My Story: Life with Interstitial Cystitis - National Pain Report

My Story: Life with Interstitial Cystitis - National Pain Report
http://bit.ly/1gXa5Yn

This is the story of a woman afflicted with a Interstitial Cystitis due to physician malpractice. She was promised that the pain would subside, but it didn't. She has to go to the bathroom 60-70 times a day, but was denied disability.

She is a fellow pain warrior and my thoughts are with her. Hopefully, she will receive her disability soon and not lose even more than the intractable pain and IC have taken from her already.

Steve

It's Raining in PA

For those who don't know, I live in Pennsylvania, a very un-friendly state when it comes to pain control (can't find a pain doc to manage an intrathecal pump and we have no medical cannabis).

Anyway, it's raining today and my pain is flaring. What many people do not know is that it is not the rain that caused flare ups (at least not for me, or my wife). If it rained for 40 days and 40 nights,  I would be fine days 3-39 (days 1, 2, 40, & 41 would be the issue). For me, the changes in the weather (& barometric pressure) are the issue. Every time it rains, I get hit twice, once when the storm system rolls in and again when the storm system rolls back out. This double whammy makes me loathe Pennsylvania's weather.

I've also read that some parts of the country are experiencing extreme weather (tornadoes). To all of them, I wish you good luck & safety.

I would love to read about your various experiences with the weather, including extreme weather conditions. Please leave any stories in the comment section.

Steve

Ask the Pharmacist: Why Am I Being Denied a Pain Medication? - National Pain Report

Ask the Pharmacist: Why Am I Being Denied a Pain Medication? - National Pain Report

http://bit.ly/1hVfr2n

I know what you're thinking, another link, really? Unfortunately, I haven't felt up to posting any personal posts. Fortunately, I've been running across quote a few great articles.

Steve

Is 5,000 IU/Day of Vitamin D Enough for Pain?

Pain-Topics News/Research UPDATES: Is 5,000 IU/Day of Vitamin D Enough for Pain?
http://bit.ly/1i2DRrV

Opioids Aren't Increasing Your Pain, but those "non-narcotic" Alternatives Might

Serotonin May Perpetuate Chronic Pain - National Pain Report
http://bit.ly/1aRnuOh
http://americannewsreport.com/nationalpainreport/serotonin-may-perpetuate-chronic-pain-8822871.html

Anyone who has read Dr. Forest Tennant's Intractable Pain Patients' Handbook for Survival or Overcoming Opiophobia knows that, contrary to popular belief, opioid pain medications do not cause pain and doctors are lying or ignorant if they tell you that they do. Unfortunately, opioids are all too frequently blamed for chronic pain. Yes, there are a handful of people who experience an increase in pre-existing pain from truly high doses of opioids. These incredibly rare cases have very specific diagnostic criteria and simply still being in pain on opioids doesn't indicate OIH, especially without a worsening of pain with each dose increase. This is seen as a tool to convince CP/IP patients and their caregivers to "free" the CP/IP patients from the treatments that actually relieve pain (mu-opioids & methadone).

"No magic bullet. The worst propaganda being pushed upon all chronic pain patients, including those with and without intractable pain are the illusive "magic bullet" formulas being advanced by either pharmaceutical and medical device industries, unethical practitioners and some health plans and government agencies...The worst deception these days is the fraudulent pitch that pain can be cured by stopping all medications, as if control is the cause!!"
-Forest Tennant MD PhD

...Here comes the irony... (sorry for the long preamble)
As it turns out, the medications that the OIH proponents prescribe and recommend most often (serotonin increasing antidepressants, like serious SSNRIs, MAOIs, TCAs, & atypical antidepressants, like Remeron/mirtazapine) could be what is actually worsening pain in chronic pain patients! Seriously! How's that for irony? Not only are these doctors manipulating their patients out of effective treatments, but they may actually be making their pain worse with these psychotropic medications (plenty of which are neurotoxic).

Remember, procedures and surgeries are high & ultra high (respectively) profit while doctors get paid NOTHING for writing prescriptions and controlled substances (especially CIIs, like opioids) require even more non-reimbursed time thanks to the overstepping DEA, overzealous prosecutors, strict regulations, and public backlash thanks to an extremely small percentage of hefty doctors who ran already illegal pull mills.

~~While I can understand hesitating to risk your medical license, freedom, career, home, and the hundreds of thousands of dollars that must be spent to defend the criminal charges (still lose medical license & career), it is completely unethical to manipulate a patient into believing a lie so that you can commit malpractice by unilaterally rejecting an entire treatment modality without reasonable cause. I've had several PMs tell me that opioids are my best and/or only option, but they don't personally prescribe. That's horrible, but at least they didn't lie to or attempt to manipulate me like the PMs at Hopkins & UPenn did (unfortunately, this behavior is on the rise and more than half of all PMs engage in this kind of inappropriate behavior)~~

Notes:
* The only non-serotonin antidepressant is buproprion/Wellbutrin/Budeprion
* There is one antidepressant that actually enhanced serotonin reuptake (gets rid of the old, useless serotonin), however the FDA has not approved it (likely to avoid pissing off the multibillion dollar pro-serotonin antidepressant industry). For those of you outside the USA, the only commercially SSRE (Selective Serotonin Reuptake Enhancer) is called tianeptine/Stablon/Coaxil/Tatinol
* The National Pain Report article is based on a medical journal article in Neuron named "Central Terminal Sensitization of TRPV1 by Descending Serotonergic Facilitation Modulates Chronic Pain"
http://www.cell.com/neuron/retrieve/pii/S0896627313011410
http://bit.ly/1aRrRbU
* If anyone reading this believes that they may have OIH (or knows anyone who believes that they have OIH), PLEASE email me! I'd greatly appreciate the chance to discuss it with you. If you're interested, I'll also provide you with information to help you determine if you actually have OIH.

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.

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

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

Friday Night Update

Once again, my wife and I volunteered at the local (well, 25 minute drive, ~15 miles each way) no-kill dog shelter this evening. Unfortunately, we had some rain, which caused my body to treat the 3 hours that we spent there feel like I was out and about for 30+ hours. Around two hours in, I was feeling extremely depressed and doing my very best to hide it. All of a sudden, the weirdest looking, and cutest, dog came over and jumped up on the table next to me. He sat as close to me as possible without touching me.

Maybe it was coincidence, but I truly believe that he knew exactly what was wrong and wanted to comfort me, but didn't touch me for fear of causing me additional pain.

While everyone else just thought that I was taking a break this dog knew not only that I was distressed, but that I was dealing with a lot of pain, even more so than usual.

-Steve

Update + Sex & CP/IP

I once again feel the need to apologize. My posting has been limited lately.

As winter draws nearer, the child weather worsens, and so does my pain. The opioids only do so much and distraction techniques must pick up the slack. Unfortunately, some of the most effective distraction techniques will exasperate my pain. My wife and I have been volunteering at the local no-kill dog shelter. This is both a great distraction and a great way to add meaning to a life of unemployment. The unfortunate part is the side effect, the SIGNIFICANT increase in SEVERE pain.

My wife wants to volunteer much more often than I am physically able, so this thing that should have brought us together has been corrupted by intractable pain into another topic of animosity.

Pain corrupts most things that make like worth living, from work and volunteer work to dating, marriage, and sex. There's nothing that we can do to stop it, but that doesn't mean that we shouldn't try to fight it.

I never would have believe that at age 24 I would need to take multiple pills (breakthrough opioids and sometimes a muscle relaxer) in order to have sex. I used to save my Actiq for the end of the day because they allowed me to perform closer to the way my wife remembered before IP took over my life. Was I still able to go for six to ten hours, hell no, but two hours was no longer out of the question. Having sex half of a dozen (occasionally up to a dozen) times a day is also a pre-CP/IP pursuit, but twice in one day and three or four days a week is possible with carefully timed opioids. *quick note: Sex is a great distraction technique when the pain gets really bad, although it can also exasperate pain flares*

I believe that the biggest reason that untreated CP/IP destroyed marriages is that it destroys the closeness that comes from sex. I'm not saying that cuddling up and watching a movie doesn't have a similar effect, but everyone needs their own ratios of each. It's a lot easier to deal with a spouse (or significant other) who is grouchy from unrelenting pain if they make you feel special.

When my doctors first cut my fentanyl patches in half and eliminated my Actiq and methadone, I gave up on life. Everything suffered, especially my wife's and my sex life. We both felt like I wasn't contributing and my wife grew to resent all of the little things that she does to make my life livable. As time went on, either of us felt very sexy or sexual and several times per day quickly dropped to 2-3 times in the first month and 4-6 times the next month. Thankfully, my doctor started to realize that he was killing me and increased my pain medication. It was at that same time that I realized that it wasn't just our sex life that we had abandoned, it was most of our relationship. When you're bedbound from pain and there are multiple known cures (to being bedbound from pain, they're only treatments to the pain itself), you get depressed and lose the will to live- not sexy.

I originally had a point beyond describing the hell that is CP/IP, but I've forgotten what that is. So, I'll end with these thoughts
1) CP/IP will corrupt everything good in your life, you can't stop it, but you can minimize it's effect
2) sex is an important part of relationships, try not to let pain eliminate it from your life
3) when sex isn't an option, there are other ways to maintain closeness- USE THEM
4) without intimacy (sex, cuddling, etcetera), relationships are doomed to fail
5) tell your doctor what CP/IP is taking away from you (even if it is as embarrassing as sex), it makes it real for them
6) All men AND WOMEN with CP/IP should have testosterone levels checked, especially if you're experiencing a loss of interest in sex

Steve

P.S. I hope that everyone is in minimal pain and handling the changes in weather and the holidays without too much excessive stress.

Another ER visit

I haven't been online much lately because I've been exhausted. On Friday, my wife and I volunteered at a local dog shelter for three hours and I WAY overdid it. I missed everything we had planned on Saturday. On Sunday, we volunteered for about eleven hours, but  I made sure that I sat most of the time (not easy for me). I washed and folded laundry, except when we took the dogs to Petco, which was really easy, almost therapeutic. I felt a lot better at the end of Sunday than the end of Friday, so we planned on volunteering on Monday (didn't happen).

Yesterday, we went to the dog shelter again, but unfortunately my wife got pretty sick. She's had  a headache/migraine for days and hasn't eaten much. She was pretty dehydrated and couldn't stop vomiting, so we went to the ER. We were taken back pretty quickly because of her cardiac history, but they left her in the room without the nurse or CRNP checking on here for over AN HOUR!!! Even once the doctor ordered the IV Zofran, Toradol, and saline it took over half an hour before they gave it to her (I had to page the buses station repeatedly). The ER want even busy! They're usually at 200% capacity (patients in hallways), but they were only at 50-70% capacity.

They discharged her without her having eaten anything

The b!tch nun that came in to discharge was extremely rude when we asked for the sandwich and ginger ale that the CRNP said she could have. She got a ginger ale. I had to give her my Zofran 8mg before we left the hospital because she was discharged so quickly.

How can you discharge a nausea and vomiting patient without making sure they can keep food down? Plus, it was 1am and we didn't have want food at home that was easy to keep down, so we had to stop and buy her something on the way home.

ERs need to stop rushing patients out the door before making sure they're okay, ESPECIALLY when they don't need the bed.

I wonder if they do it to everyone. My wife has a capitated Medicaid HMO and I have Medicare Parts A&B as primary and traditional Medicaid as secondary. Has anyone else experienced this? If so, what type of insurance do you have?

She's doing better now, thanks to my Zofran (her insurance refuses to cover it). She's been sleeping ever since, except when I wake her up to take her meds.

To be completely honest, if my ER hadn't helped her, I was ready to go out and find her some cannabis so that she could eat and drink and break the cyclical vomiting cycle. She's become acidotic from this before, so I was pretty worried. Thankfully, their 2mg of IV ondansetron and 990ml of 0.9% NaCl solution (saline) helped her enough that she could keep down 16mg (8mg*2) of oral ondansetron, then some real food.

Steve

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

Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts! | Intractable Pain Journal

A blog entry that I found very interesting and relevant...

Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts! | Intractable Pain Journal

http://bit.ly/HIN1xi

Update- October 28, 2013

I realized that I've let some of you down by failing to post much more than links. For that I apologize, I owe you all some original content.

I decided to start out by updating you on hope I've been doing. Unlike most weekends, I didn't spend hours at the park, library, or historical society with my dad, wife, and daughter. Still, I'm in excruciating pain, as if I'd run a marathon. The clonidine isn't helping with the leg pain at all. Despite the fact that I can still walk sort distances and don't have paralysis, I know that I'll soon require a wheelchair because of the weakness and pain in my legs.

The opioids that my PCP (or anyone else) is willing to prescribe exclude three of the most efficacious medications, methadone, Actiq, & intrathecal morphine.

There's something that I've been considering that I am very much against overall. It has become extremely obvious that no one is going to come to my rescue. No one will prescribe what I need and no one is willing to manage an intrathecal pump on a patient like me. I am a high risk of litigation because when I die, there will be no way to prove that the tumor killed me, not the high dose opioids. Actually, the inadequate analgesia itself could cause my death (through stroke, heart attack, or even aneurysm) thanks to the constant overdose of cortisol and epinephrine/adrenaline.

I have many types of pain throughout my body. Most of it originates in my spine, brainstem, and/or brain. Most of the pain responds to mu-opioids. Unfortunately, my leg pain only responds to intrathecal mu-opioids and methadone.

Methadone is a mu-opioid, like morphine, codeine, fentanyl, sufentanil, alfentanil, oxymorphone, oxycodone, hydromorphone, hydrocodone, and others. Methadone is also a kappa-opioid and NMDA receptor antagonist. Both kappa-opioid and NMDA receptor antagonists are extremely effective in treating neuropathic pain. Contrary to popular belief, Neuropathic Pain DOES respond to mu-opioids, HOWEVER it requires significantly higher doses than other pain types. For patients, like myself, that were born with a high tolerance to opioids, all pain requires a higher dose of opioids, but neuropathic pain in patients who already require high doses requires higher doses than most doctors are willing to prescribe. Low dose methadone on its own doesn't help me with most of my pain and only partially reduces my neuropathic pain, but, when added to my fentanyl regimen, it almost eliminated my leg pain and somewhat improved my other pain.

For those of you that don't know, intrathecal pumps deliver medication into the spine (one layer deeper than an epidural). Unlike an epidural, they use opioids only or mostly opioids. They use little or no buprivicane, so you can still walk and feel your limbs. Morphine is the FDA approved opioid for intrathecal pumps (although fentanyl, sufentanil, alfentanil, hydromorphone, and methadone can also be used; hydromorphone and fentanyl are the most common off-label intrathecal opioids). ONE milligram per day of intrathecal morphine is ROUGHLY equivalent to
* 300mg/day oral morphine
* 180mg/day oxycodone
* 90mg/day oral oxymorphone
* 9mg/day IV/IM/SubQ oxymorphone
* 48mg/day oral hydromorphone
* 3-6mg/day fentanyl
* 125-250 mcg/hr fentanyl

While intrathecal morphine is 300x stronger than oral morphine, the side effects are not. I cannot tolerate 2mg of IV/IM morphine or 5mg oral morphine without my throat swelling up and a drastic increase in painful muscle spasms and my neurosurgeon knew this prior to my intrathecal morphine trial. He still decided to use morphine in my intrathecal trial. Even at 3mg/day (0.125mg/hr) intrathecal morphine (equivalent to 900mg/day oral morphine), I had ZERO side effects.

Back to my point, I'm considering making an appointment with the local interventional pain management doctor who treated me pretty well, despite his interventional only attitude.

I'm curious to know if any of you have any experience with injections for neuropathic leg pain. I'm afraid that it could make the pain even worse. I'm definitely against multiple longterm injections of steroids, but even a single injection of just the numbing agent (lidocaine or similar) carries risk. I'd love to read your feedback.

Speaking of feedback, I have been receiving reports of problems with Blogger's native commenting system, so I decided to switch to a third party system. The system that I chose is called Disqus. It does require login, but you don't have to sign up with them, you can login with your Facebook, Twitter, or Google account. You have to authorize Disqus to let you login with your social media account, but it's a onetime, quick, and easy. Please let me know what you guys think. Thanks.

If anyone would like to share their stories or ask any questions, please don't hesitate to email me or comment below.

Steve
IntractablePainKills@gmail.com

Clonidine

About two hours ago, I took my first dose of clonidine 100mcg. Aside from the drowsiness and headache, it sense tolerable. My doctor prescribed it in the hopes that it will help me with the neuropathic pain and migraines. I'm hoping that it also helps with my PTSD.

If anyone reading this has any experience with clonidine (pills or patches) for the treatment of any condition, please let me know by emailing me and/or commenting below this post.

Steve
IntractablePainKills@gmail.com

Study: Cannabis Provides Substantial Relief to Those With Back Problems

Study: Cannabis Provides Substantial Relief to Those With Back Problems
http://bit.ly/19Q2OVD

Chronic Pain Harms the Brain

Chronic Pain Harms the Brain
http://bit.ly/16PpDKC

I believe that the brain imaging illustrates the damage most clearly. Failure to treat acute or chronic pain leads to CNS damage and chronic pain. Untreated and undertreated CP/IP (Chronic Pain/Intractable Pain) leads to brain atrophy and death.

-Steve
Please consider taking the time to read my previous posts  check out the links on the sidebar. Thank you.

Update- October 3

I don't really have much to say, I'm still recovering from spending the day out on both Saturday and Monday. I'm still in pain. I'm trying to get by. I just want you all too know that I haven't forgotten about you.

It's 11:20am and I still haven't slept, which means I've recovered from the post-exertional malaise from the CFIDS, but now the insomnia has returned.

Steve