Long term Oxycontin Use and New user introduction

Hello everyone. I am new to this site and I would like to intro myself and express some concerns I have.  I am the spouse of a long time prescribed oxycontin user. My wife was diagnosed with lung cancer 11 years ago and recieved radiation, chemo and a lung resection for a pancoast tumor that had invaded her chest wall. Four ribs were removed and the tumor also involved the ganglion nerves in the chest wall.  No cancer has been diagnosed since, but the scar tissue in the area makes it very difficult to see anything. At her peak, she was taking 6 80 mg, 3 40mg, and 3 20 mg pills a day with 250 5 mg a month as needed. She hates being on the medication and has worked very hard with a pain doctor to cut down.  She currently takes 5 80mg and 2 20mg a day with 150 5mg a month.  Her pain has increased a lot, but she would rather be in pain than be on the drug. Her pain dr. told her she was the only patient he has to is trying to reduce her medication.

  I am worried about the long term use of this drug beyond the addiction. She was diagnosed at 37 and is now 48 years old and I am concerned about liver, kidney and respitory function.

  As a side note, with the generics running out we had to pay for most of her last month of 20mgs.  After walmart told us it would be 385 dollars, I shopped around and found a local pharmacy a block from walmart that quoted me 265 dollars and insurance ended up paying 60 dollars toward the total. When the 80 mgs run out it could get dicey paying until were out of the donut hole. We were on the Purdue Pharma plan early last year for a few months. They took months to approve us and we were already into catastrophic coverage on medicare by the time they approved us.  They made it so difficult and added hoops every month that we never knew if we would get the medication on time. My wife cannot afford to not have the medication, so the stress of worrying about it made her pain even worse.

   Bottom line, it does pay to shop around. You can get scripps thru Purdue(25 dollar copay per script).  I just hope the cure doesn't kill my wife more slowly and painfully than the original disease.

She would love that more than anything. The doctors have not only advised her against it, but have  told her she will never be able to be off it completely. She is determined to prove them wrong.  She has even had a spinal cord stimulator installed to try and help.

 thank you for your input.

I don't post much here, but this is a topic that concerns me. I went for 28 years or so, with no pain control. I never got or asked for anthing. I would get T3's that might cover the very peaks of the pain, but it never did anything for the pain mountain.

I too - never wanted narcotics, as a matter of fact - I fought and railed against the meds for at least 2 years, after I was diagnosed with chronic pain. And when I looked back at my world, I had been experiencing those symptoms for at least 15 years, if not longer. The thing is this, uncontrolled pain, causes the neuropathways of the brain to be altered. What in fact happens is that as the pain gets to the brain more and gets to take over, it develops what I call a "pain rut". This is my way of describing the situation. After years, the rut becomes a paved hyway and because of this, the pain gets a fast ride straight to your brain. Hence- increased pain as time passes. This is true and holds as long as the disease that underlies the condition is stable. If it increases, then the pain increase too! Makes sense?

If you wish to decrease the meds - it is simply not a plan to just decrease the meds and hold onto the chair like your going to rip the arms off it, or clench your teeth and grin - all the while your blood pressure is climbing through the roof and your bowels have let go, cause pain will manifest itself in unpleasant ways. That paves those pathways. Having adequate pain relief when needed - and doing things that take your mind off the pain, like a hobby or dinner or something that you liked to do in the past, allows you to break the pain cycle.

It really comes down to getting really adequate meds and then using them to get your pain levels down to a point where the "pain hyways" are broken. This takes a lot of time and once the brain stops "hearing" the pain screaming at you, it starts to forget about the pain and begins to build NEW pathways. This is described as neuroplasticity. You can find good research here and other places that describes this and how it works.

I trust that you have worked or started with Mind Body Medicine - in its simplest form, meditation and everyone can use that - It takes about 30 to 45 minutes per day, but you can learn to do it quicker. Once you have used it repeatedly - you can involke the benefits in as little as 2 or 3 minutes. It can help lessen pain - by a level or two. And help to make it bearable. You can learn how to do this off of any website, there is no wrong way to do it, just by doing this changes the pain paths.

Also - worry and the emotional side of pain are connected to each other as all of this is processed in the same part of the brain. So almost everything that goes on in life, gets a chance to affect and effect the pain we deal with each day. Learning to use the meditation -daily allows you to not fall into old habits of reacting negatively to the pain and then starting a high pain cycle - due to the emotional bagage that goes with things. It requires a bit of faith, that things will work out - in the end, we just don't know how to get there just yet.

I never imagined that my journey would have also lead me to reduce my meds, but I do.

And a word about the meds. I don't know why I was started on morphine, but I was. It was cheap, still is. I have been on other meds and spent time on Fent as well. The Fent was needed and I used it to break the pain paths that had been built up by the years of trying to live without any meds. Once my mind stopped listening to the pain, there was a point where I switched back to morphine. I still use it, because it is cheap and since cost is a consideration, consider asking to be put on the old standby - It works!

Truthfully- I hope you find some relief. As for wondering about addiction. You don't hold back insulin from a diabetic, this is exactly the same situation. There is too much misinformation on the web and doctors are not much better when it comes to being educated about how pain patients react to meds. We live it every day. :) C45

Hi, Mac,
I'm glad you posted an introduction. I'd really encourage you to read Centurian45's post - maybe even print it out for your wife, as it's one of the better explanations I've seen here about how pain pathways work. Having her see a good pain psychologist can help with this, in conjunction with her regular PM doc.

As others have indicated, physical dependence is different from addiction. With most of the medications we take for CP, physical dependence, and sometimes tolerance (needing more of the medication to achieve the same relief) occurs. (Dependence pretty much for all, tolerance for some) But addiction only occurs in a small percentage of CP patients, and in someone with no history of addiction, genetics can play a role. But even if one is addicted, working closely with a doctor who understands both can help.

Few if any of us want to be on the medications we're on. But pain takes a toll on the body, and can strengthen pain pathways, as Centurian explained. So working on all fronts with a variety of modalities is the best thing to minimize the amount of medication we need. Still, most of us will need at least some. And many of the opiods are actually easier on the body than other meds. because they don't affect as many organs. You and your wife can ask your doctor - and sometimes a well-informed pharmacist - to help you understand all this.

Hope this helps a bit.

Again, welcome.

PaLady