Welcome Chrisherry - Warning about Actiq or Fentora

Welcome Chisherry               I am sorry to hear about your chronic pain.   As we all know, p ain 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.

Stella,
When I read what meds she was on I was astounded...That kind of medication for something like back pain....Don't get me wrong, I understand pain, but that was a bit much. Thanks for saying what I didn't have the guts to say myself....

Thank you Stella, and I hope you are doing okay today.

Me.

Hi Chrisherry!
I too wanted to welcome you to HW. I am also on Actiq for non-cancer pain, though I'm on 200mg 3-4x/day. I can see what the others are saying, b/c you do have to think about what you will do when you max out at 1600 4x/day. How will you handle the pain then? My PM brings this up to me a lot. I am allergic to all the other pain meds so I really don't have any options for controlling my pain, but I wanted to share with you some of the other things we've tried to keep my dose low (I've been on it for 6 years now with no increases).

Have you tried Lyrica? It is approved for fibro & I found it really helps, esp. at night. Also, my doc puts me on a 10-15 day "drug holiday" once a year where I go without my Actiq for that time. It is pretty miserable (okay, really miserable), but it resets my tolerance & I am able to get an increased benefit from the same dose when I start back on it after the holiday. Sometimes I can even cut back on how many times a day I take it for a while. Also, have you tried non-drug treatments? A co-worker of mine with fibro got me started with an osteopath with OMT (osteopathic manipulation therapy/treatment). It has been fantastic with helping me. And she was able to get back to work after a 2 year LOA & only needed Lyrica & Motrin to get through the day. My gym has special classes for people with fibro. You need to go much slower & gentler when working out, but strength & stretch work does help with pain. I don't have fibro myself, but I know it's helped me and I've met a lot of fibro people who swear by those classes. Maybe you've already tried all those ideas, just thought I'd pass them along in case they could be of any help to you.

For your teeth, have you talked to your dentist about sealants? I got them & they have been a godsend. They are quite cheap (esp. compared with fillings) & I just need to have my dentist change them out every couple years. Normally sealants last 7-10 years, but the Actiq eats through them quicker. Still, at least they prevent cavities. :)

take care,
frances

Sherry, I have a Medtronic pump and its been a life saver for me especially now that I have a new pain mgt dr that is highly trained in pumps. I have absorption problems from crohns disease surgery, wacky system that does not tolerate medicatons of any kind well at all. We ran the gambit with me and oral meds and this is how I ended up with the pump. Now, I have a wider variety of medications that can be used in the pump. I do wish you would do some research on the pumps, sounds like you may be a good candidate for one. The surgery was not that bad....Susie

Frances,
No I dont really have any sensitivity problems. I did have a tooth that I had capped and did have some exposed nerve. I could see if the tooth had a cavity if it got to the nerves they would be very sensitive but I try to catch them as soon as possible.

Susie,
I have been on my current med regiment for about 1 1/2 years and am well controlled so hopefully I wont require any increases any time soon. I have put a good bit of thought into the pump but like I said I am scared and when you are on things that work for you, you get reluctant to change. Thats how I am right now. I guess the pump would be my last resort.

Thank you Stella a great post. I too believe in the pump especially after having a new pain mgt dr on board that handles nothing but pump patients. Gosh what a difference this lady has made in my in one visit, actually two visits. On my second visit it was time for a refill and she made adjustments with my meds that are just unbelievable. I am not taking any oral meds now for BT pain, don't need them. I even mopped my living room last night and was just sure half way thru I would be screaming in pain-never happened. Before my refill she increased my oral Dilaudud from 2mg to 8 mg every six hours and it really helped. In addition to her knowledge of pumps she is very educated in pain medications and does her compounding. I went for a check up last week after my refill and we left my pump where it was. I really did not feel I needed an increase just yet. Plus I have been sick and really had not been able to try my wings with my new adjustments.

Its a shame that people are so afraid of the pump. I really feel alot of people are missing out on so much life because of their fears. To me the pump is freedom. I guess I am not one that wants to be miserable all the time I don't know. There are some people that are that way, its like it all they know, so sad. I have to have quality life without it I am no good.Hugs, Susie

 

 

Stella,

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..

 

Me.

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!!

Melissa

I am sorry that I offended you.     I DID NOT HAVE THE RIGHT TO MAKE THAT STATEMENT CONCERNING ADDICTION.  I apologize for that word.  As I stated in my 1st post, I was just sharing my experiences with you. My comments were what I was forced to learn that hard way from two Addictionologists, as well as several top pain management specialists about the use of Actiq for non-indicated uses. The addictionologists and PM specialists said that because it was so strong and so addicting to the people who take several a day - that is why it's use was so limited by the FDA. I agree, I had no right to say you were addicted-but the statistics for this med are horrible when I comes to crossing the dependency line. I never thought I was addicted to them only dependent. But they were unlike my other pain meds. I just did not want you to fall into an inappropriate tx plan like I did by a PM specialist I trusted with all my heart. When I was given a 3 day detox warning because PM dr was not available - I just wanted to warn or spare anyone that nightmare. My intentions were never to offend you, just present information I have gain in my travels thru pain management, chronic pain rehabilitation and with addictionologists.  I respect your request. The topic of your posting use is closed.