I am sorry to hear about your chronic pain. As we all know, pain is a horrible thing. When I read what pain medications you were on, I felt I had to share my experiences with you. I was diagnosed with a terminal illness and was given a 2 – 8 year life span. Because of my terminal status, my first pain management MD Rx'ed a variety of oral pain meds and also had me on Actiq 1000 mcgs 4 x a day for break thru events. I was shocked to see that your pain management doctor has you on Actiq at all – no less 1200 mcg per day for a noncancerous diagnosis.
As you are well aware, Actiq 1600 mcgs is the strongest schedule II oral pain medication there is. There is nothing stronger and you are already on 1200 mcgs. I think the comparison rate is almost 80 times stronger than morphine. If you are taking 4 a day – the cost has to be $4000 plus a month. I am shocked your insurance company hasn't pulled the plug. Mine sure went crazy. Twice in 18 months they refused payment when I went to pick up my Rx's. One of those times I was totally out of Actiq and was forced to pay $4300 out of my pocket for my meds because it took several days to straighten everything out with my insurance. Actiq is very short acting – but with a rapid onset- so it is recommended for breakthrough cancer pain. If you require fentanyl for pain relief, the Duragesic patch provides continuous medication. I have found from personal experience, lower doses of continuous fentanyl provided better pain control. I am certainly not a doctor, but experience has taught me the hard way Actiq and Fentora are Red Flags in the insurance industry and with most pain medication specialists.
Here is my Actiq nightmare. I am considered terminally ill – so the cancer indication was waived. Fentanyl (Actiq) at these massive ORAL doses create havoc on your entire pain system. I can guarantee that you are not just dependent on them – you are addicted. I know – I have been there. PM specialists will tell you that Actiq IS ADDICTING not just physically dependent - and addiction happens within 2 weeks. Actiq and Fentora create tolerance issues rapidly, so you need more and more for pain control – they are not designed for long-term use. They are considered end stage of life pain meds. They also totally shut down your body’s natural pain fighting abilities and put patients in an opioid induced hyper-analgesic state. They sure did for me - I did not believe it at first.
All of a sudden, my pain management specialist had to take a medical leave, so I was reassigned to another specialist at the same major teaching institution. Guess what – no one would prescribe it for me. NO ONE. Cancer only they said. Everything else was OK, duragesic patch and Dilaudid – no problem. NO ACTIQ - NO FENTORA per the consensus at this top 10 major institution – I had a choice of how I wanted to get off it. Fast – three days or slow 12 days. It is a horrible drug to detox. Nevertheless, I have to be honest, after 6 weeks of feeling like I had the flu and every inch of my body hurting – I actually felt better. Those high doses of Fentanyl made my pain much worse. I was already having bouts of level 10 daily, but the massive Fentanyl doses had destroyed any of my natural ability to fight of pain.
You are totally maxed out. You have nowhere to go if your pain gets worse. There are many other options like the pump that are much better choices. I would highly recommend a second opinion about your pain meds. I thought I would die without my Actiq or Fentora. I thought the pain would kill me. I can almost guarantee that you are going to run into a problem, as I did. Either your insurance will refuse to pay $50,000 a year for Actiq, because you are not a cancer patient, or a doctor will refuse to write it. As horrible as that experience was, I learned a hard lesson about pain medication. More is not always better. Sometimes a level 4 or 5 is the best you can hope for, because adding more narcotics can make your pain worse not better. I have learn many biofeedback and meditation techniques that really do help.
I do not want to sound like I am preaching, but it was a horrible experience when you realize that no one is going to Rx a medication. It is best not to ever have to face that – and I have heard several people now that have had identical experiences.
Best of luck in your pain relief quest.
Rare neurodegenerative disease called “Multiple System Atrophy”. Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.
Post Edited (Stella Marie) : 2/17/2009 11:46:30 PM (GMT-7)
We are all in the same boat...unfortunatley it seems like it's sinking...
Post Lamenectomy Syndrome
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed
I also have a pump and gastric absorption issues. The pump was a miracle pain reliever. Because the medication goes directly into the spinal area, there are no gastric issues. I am curious why the patch offered no relief, it is absorbed thru the skin and also bypass' the gastric system.
The pump also is great for custom blending of medications, low doses (about 1/100 the amount you require orally) and also offers bolus dosing at specific times of the day. There are many IV meds that can only go pump and offer unique pain relief.
I was only on Actiq and Fentora for 20 months. I can tell you that getting 1200 mcgs into your system within 20 minutes creates major tolerance issues. It will happen. I know that you did not start of 1200 mcgs - since the starting dose is something like 200 mcgs. Four is the maximum you can take in 24 hours without worrying about respiratory distress and OD'ing . So somewhere in the 1 1/2 years that you have been using this med, the dose and frequency must have been increased. No one starts at 4 a day 1200 mcgs - you had to build up to that dose. Actiq is one of the few pain meds that is truly addicting to pain patients and not just creates dependency issues. If you are using all 4 a day - every day for break thru short term relief - your brain is getting a huge bolus of fentanyl 4 times a day. 4800 mcgs a day is a wopping amount.
I can promise you that your insurance, no matter how good it is, will eventually question a $50,000 - $80,000 a year expenditure for a non indicated medication. You have only been on it 1 1/2 yrs - someone is going to notice.
I was kidding myself about thinking that this was the only med that controlled my pain. Once my new pain med doctor pulled the rug out from under me by cutting off my Actiq and then adjusting my pump and oral meds - did I begin to have have true strides forward in my pain management.
Your doctor may not be doing you any favor by using this end stage med for back pain. Please consider a reevaluation. You have nothing to fear if this is truly the only med that works for you. You have much to gain if a good PM specialist creates a pain plan that will last a life time. The one you are on now is designed for short term (less than one year) use. It is designed for end stage cancer pain when nothing else works. Please don't use up all of your options in only two years.
A non-narcotic that I have noticed pain relief from is Cymbalta. I noticed a difference within 3 weeks of reaching a therapeutic does of 120 mgs.
The pump can be trialled without surgery to see if it works for you. The surgery is minor - same day - out patient surgery. Within a month, your fine and you have a pain tool with almost unlimited options and no gastric issues.
Post Edited (Stella Marie) : 2/18/2009 1:44:01 PM (GMT-7)
I have a question about the pump...What is the difference when you take pain meds orally and get them introduced through a pump? Can you still "feel" it, do you have withdrawls? Does it actually work better then taking them orally?
Silly ??? maybe, but I worry about stuff like this, like maybe it will help but send me into withdrawls...Any answers will be helpful.
I am not getting the same relief from my meds anymore and would like to talk to my Dr. about the pain pump...He mentioned it once and said when I was ready we would talk seriously..
Chrisherry, hey girl, I tried to get a private message to you but I don't think you have listed any options. My aim and msn messenger is listed so if you have a sec, try and contact me, thanks!!
Post Edited (Stella Marie) : 2/18/2009 5:45:48 PM (GMT-7)
chrisherryWow! Some heated words there....we have all been through the "addiction" "dependence" issue before so don't take it personally girl...
I started a thread a while ago about it and BOY what responses I got!!! For a long time I considered myself an addict, only because everybody said I was. Now, that I have been seeing a great PM Dr. I can see the difference. And now I feel much better about it.
I no longer feel guilty about taking my meds. I no longer let what others say offend me. I truly think that I am okay...Even though I have to take pain meds around the clock.
So, please don't take offense...we are all here to help each other...
Have a great day everyone......