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FENTANYL Increase???

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jeannie12
jeannie12

My pain doctor wants to  slowly take me off Actiq lozenges and increase my fentanyl patch.  I am 65 years old, have heart problems, diabetic, and have complex sleep apnea (sleep apnea could be because of the fentanyl) and chronic pain due to failed spine surgeries.

With the CDC issues that are arising, my doctor wants to lower my Actiq usage ( I take approx. 110 lozenges/month.  Dosage being 1600 mcg.  I also take the fentanyl patch (100 mcg/72hr).  He wants to decrease the lozenges because of the CDC proposed legislature, and it "looks" like, according to the CDC, he thinks it looks like he is prescribing too many.  So he wants to decrease the amount of lozenges he prescribes, while increasing my patch from 100 mcg to 150 mcg/72 hrs.  I have been on the above dosage for approximately 12 years.  I have been compliant with my pain med usage, and prior to my going on the fentanyl, I had tried many other pain meds, none of which eased my pain like the fentanyl does.  My real concern in all of this nonsense is with the increase in the patch, I worry that my sleep apnea will only get worse.  

My doctor told me that he has prescribed the patch as high as 200 mcg/72 hr., but in all my years with pain management doctors, every one of them would not even think of increasing my patch.  I was told that 100 mcg/72 hr. was the most they could prescribe.  Is this true?  If so, how do I tell my doctor "no, I am not going to do that" for fear of dying in my sleep because of too much fentanyl in my system.  That would be like telling him he doesn't know what he is doing, and you KNOW that will not fly!  Am I wrong here?  Can the patch be increased higher?  I really am worried.  At 65 years old, why can't I be left alone.  My pain is in check and has been for a very long time now, and with all my other medical issues, lets face it, I won't be around much longer anyway, so why not just leave an old lady alone!  I'm sorry, but I am really scared here, and my doctor knows it, but he doesn't seem to be budging, and there are no other pain management doctors around where I live.

0 likes, 5 replies

5 Replies

  • susan56123
    susan56123 jeannie12

    Posted

    Yes I have been above 100 before and have known many cases that use combination patches to achieve needed pain level.  The Actiqui pops were prescribed to me s break thru pain relief not constant usage.  Believe me the less you can take of this med the better off your body will function.  I would give it a go if I were you.  The CDC is trying hard to lower the med usage on all patients because there are too many people using.  My doctors are trying to reduce also. Can you participate in physical therapy?

     

  • Actiquser
    Actiquser jeannie12

    Posted

    Hi Jeanie, I think you need to reveiw your situation and decide what you want. Its take me a while to decide what I want and its a life without Fentanyl. I had cancer and was not expected to survive but I have and do not have a good quality of life due to the side effects of my treatment. I am 5 years younger and I want my life back. I have a 50micg patch and take 8 Actiq a day (240 a month). It was suggested to stop these and increase my patch to 75micg. No way this is so sooo adictive. I am currently tapering down the actiq now on 4 a day with small withdrawal sweats etc and hope to be off these in 2-3 months. Then will taper the patch and hope to stop. Pain is a big issue. It will be an even bigger issue if in the future I need more operations (This is likely) if i'm still on Actiq and Fentanyl what will they give me for pain that will be a big enough dose !!!!. Similarly with you if you up the fentanyl your only feeding the addiction and yes it might just send you to sleep penamently. Fentanyl should only be use in the terminally ill as it is so addictive.

    This is why there is a drive to get people of the Actiq who are not terminal.

    Anyone with sleep apnoea should not be on Actiq as it causes respiratory depression so maybe its time to stop them. Sorry if its not what you want to hear.

    Withdrawal is not as bad as it seems if you are possitive and want to do it.

    ( Ha Ha remind me of this in the next few weeks). Actiq makes you live in a fog/haze anyway. However if you want to reduce and stop them you need proper support and guidance from your care giver / Doctor. Good Luck with what you decide and I hope you get better support and guidance than you are at the moment.

  • Actiquser
    Actiquser jeannie12

    Posted

    Hi Jeannie, I'm of the Actiq. I cold turkeyed from 4 a day. Withdrawals not too bad so its do able. next to go is the patch

  • Actiquser
    Actiquser jeannie12

    Posted

    Hi Jeannie you are getting approx 2-3x more fentanyl per day from the

    actiq 6400 mcg than you are the patch 2400mcg. THE licencing for ACTIQ in many areas is for cancer patients only.

    Also anyone over 65 should be given a reduced dose of fentanyl due to ageing issues.This is in the literature too.

     Sorry this is not sounding too good for you but its why your Dr will not be willing to prescribe Actiq and I doubt many other Drs will prescribe either even if you find another pain Dr.

    I've stopped the actiq now tapered then cold turkeyed from 4 a day . Now 2 weeks and surviving. Pain has gone up a little, but the whole world is a lot clearer.

  • Actiquser
    Actiquser jeannie12

    Posted

    Hi Jeanie, how are you doing? You have not replied to any one and you sound quite low in spirit and I was wondering how you were doing.

    I know I had difficulties when the Dr wanted me to stop the Actiq lozenges and it took me a year to agree to it. It's always a difficult mental issue to deal with if you feel your pain is under controlled with your current regime. As we get older none of us like change and would rather be left alone. I know the actiq lozenges helped me,  I know they helped me cope mentally with my poor quality of life and hide from the reality of a grim life which is what I wanted.

    Please let us know how you are. We are all here to help in any way we can. Please try not to be scared. A problem shared by those who have the same problem and have overcome it / trying to cope with it can only benefit you rather than being alone and isolated. I have found lots of supportive people here who have offered great help and ideas.

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