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Reducing fentanyl with severe chronic pain
  1. #1
    EndoSucks is offline New Member
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    Default Reducing fentanyl with severe chronic pain

    Hi,

    I'm looking for some advice. I have severe pain from active endometriosis, adenomyosis and interstitial cystitis. It's a bit like having a burst appendix but all over, including referred pain into the lower back, loin, legs and up to my ribs.

    I've been using fentanyl patches for about 11 years. Initially I settled at 75mcg. In that time I've increased my dose twice, once in 2008 to 100mcg and once 2012 to 125mcg. I've not needed any increase since. My pain is still pretty bad, 6-7/10, but has consistently been so, as opposed to 8-9+/10 without the fentanyl (I never say 10... It can always be worse IMO). The few occasions that I've been given higher doses in hospital, I've had reduction to 3-4, without any drowsiness or respiratory depression, and controllable nausea and constipation. But they've been loathe to stay at those doses after discharge. So I settled on 6 -7 being my "normal".

    My doctors have now decided I have opioid induced hyperalgesia, despite my consistent levels of pain and worsening endometriosis, and started a drug taper. Well, I say taper... I was told to stop taking any morphine breakthrough (20-40mg avg 1-2 a day) and reduce my fentanyl to 100mcg. So I did.

    I've suffered no withdrawal symptoms (and I have in the past when previously reducing too quickly, 50%, after a surgery, so I know what to look for) but, as expected, my pain has significantly worsened. I'm now mostly averaging 8/10 a day with 6-7 episodes of 9+ breakthrough, I'm only getting one day out of three with full effects, and the little quality of life I had is now further reduced.

    After 3 weeks of this, I've seen my doctor today he suggested tapering more slowly and perhaps swapping to an oral medication to make that easier. For now, though, we decided to try increasing to 112.5mcg. He would have increased to 125mcg but I suggested the compromise to show I'm willing to keep trying.

    Anyway, after my rambling, my question is this. How long does it take for active pain to "settle" to its baseline after decreasing or stopping opioid medication?

    I know withdrawal is usually 7-10 days but he was saying it takes time for pain to reach equilibrium, as it were, as just reducing the dose can make it worse than before.

    But isn't that a slightly different issue to hyperalgesia, where usually improvement is within days and gets better every time you reduce the dose?

    I'll find out, at least, if this extra dose increases my pain, it will clearly be hyperalgesia though from everything I've read, it doesn't seem to match my situation (I feel it's more likely worsening of my endometriosis, which is based on many years of the disease, and some tolerance too).

    Sorry for the essay. Please advise if you have done this sort of thing.

  2. #2
    EndoSucks is offline New Member
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    Nobody's gone through this? Really?

  3. #3
    melindau is offline Member
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    I have endo!!!Im here for ya!!!!
    Melinda

  4. #4
    melindau is offline Member
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    Quote Originally Posted by EndoSucks View Post
    Hi,

    I'm looking for some advice. I have severe pain from active endometriosis, adenomyosis and interstitial cystitis. It's a bit like having a burst appendix but all over, including referred pain into the lower back, loin, legs and up to my ribs.

    I've been using fentanyl patches for about 11 years. Initially I settled at 75mcg. In that time I've increased my dose twice, once in 2008 to 100mcg and once 2012 to 125mcg. I've not needed any increase since. My pain is still pretty bad, 6-7/10, but has consistently been so, as opposed to 8-9+/10 without the fentanyl (I never say 10... It can always be worse IMO). The few occasions that I've been given higher doses in hospital, I've had reduction to 3-4, without any drowsiness or respiratory depression, and controllable nausea and constipation. But they've been loathe to stay at those doses after discharge. So I settled on 6 -7 being my "normal".

    My doctors have now decided I have opioid induced hyperalgesia, despite my consistent levels of pain and worsening endometriosis, and started a drug taper. Well, I say taper... I was told to stop taking any morphine breakthrough (20-40mg avg 1-2 a day) and reduce my fentanyl to 100mcg. So I did.

    I've suffered no withdrawal symptoms (and I have in the past when previously reducing too quickly, 50%, after a surgery, so I know what to look for) but, as expected, my pain has significantly worsened. I'm now mostly averaging 8/10 a day with 6-7 episodes of 9+ breakthrough, I'm only getting one day out of three with full effects, and the little quality of life I had is now further reduced.

    After 3 weeks of this, I've seen my doctor today he suggested tapering more slowly and perhaps swapping to an oral medication to make that easier. For now, though, we decided to try increasing to 112.5mcg. He would have increased to 125mcg but I suggested the compromise to show I'm willing to keep trying.

    Anyway, after my rambling, my question is this. How long does it take for active pain to "settle" to its baseline after decreasing or stopping opioid medication?

    I know withdrawal is usually 7-10 days but he was saying it takes time for pain to reach equilibrium, as it were, as just reducing the dose can make it worse than before.

    But isn't that a slightly different issue to hyperalgesia, where usually improvement is within days and gets better every time you reduce the dose?

    I'll find out, at least, if this extra dose increases my pain, it will clearly be hyperalgesia though from everything I've read, it doesn't seem to match my situation (I feel it's more likely worsening of my endometriosis, which is based on many years of the disease, and some tolerance too).

    Sorry for the essay. Please advise if you have done this sort of thing.
    so after reading your post again...you want to know how long before your true pain sets in right!well I have never had what you have but my daughter has and I watched her go thru so much!!!It was very hard to watch that she was in s much pain...I have DDD and fibromyalgia.. and when I got clean it must have been a good couple weeks before I could tell what my true pain was!!! but I did a long taper off my drugs!
    if ya need to talk Im here for you!!!
    Melinda

  5. #5
    EndoSucks is offline New Member
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    Thanks for that. I appreciate it. So, after 3 or 4 weeks at a new dose, it is likely my pain isn't going to drastically shift one way or another, from your experience?

    I must admit my pain has improved after a few days on the increased dose, so I'm pretty sure I don't have straight hyperalgesia... But there could be more subtle effects that would only become clear after reducing much more.

    Thanks for the response. :-) In some ways, pain is pain, regardless of the cause.

  6. #6
    makanda is offline New Member
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    The F patch is a helluva drug. I watched my friend die because of them. There is this saying that "pain is weakness leaving the body" but I think that's a load of bull. A lot of what helps me is staying positive and forcing myself to go out and do things, or at least be productive at home.

  7. #7
    The Husband is offline Member
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    From my understanding you would need to be off opiates completely to know if you have hyperalgesia. All I know is to get of fentlyn is very hard and to know your true pain you need to let receptors in brain reset and that could take a year of no opiates.

  8. #8
    EndoSucks is offline New Member
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    Thanks for the replies.

    Interesting about taking a year though. All the research papers I've looked at suggested that even if you go off high doses over a few days, you usually feel the reduction in pain within as little as 48 hours. Even the pain nurse I saw suggested a couple of months with a reduced dose would show an improvement in hyperalgesia. Something I'll have to discuss at my next appointment.

    I'm not entirely sure what I would do without any pain relief for a year, to be honest. Stopping doesn't bother me, never has caused me any problems except the one time my daft doctor told me it was fine to halve my dose. But given a few days to adjust at each step, my past experience suggests that the only limiting factor would be my chronic pain being intolerable. In fact, I'd be willing to cold turkey with some temporary symptomatic relief, if it would help. But I already push myself to my limits as it is, and maybe I'm just weak or a coward, but a year with continual pain 9+/10 isn't a prospect I'm particularly keen to experience.

  9. #9
    The Husband is offline Member
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    I agree that reducing your pain medication should give you an idea of if it is hyperalgesia but I completely disagree you would be able to tell in two days maybe in a month or two after reducing but it's tricky to tell while on opiates. In your case being on the fent patch for so long I don't think you could be stable in 2 days after reducing from a scientific stand point you would still have fent built up in your system due to the 72 hour half life maybe in a week or two. You could tell in a shorter time if you were on say Opana ER which has a half life of 12 hrs. The other issues is a decade of opiates your true pain level could take 3 months - 12 months and this would be from when you stopped all opiates. The reason I say up to a year is that is how long it would take for your brain receptors to reset and function as normal as possible people don't understand that opiates will actually change your brains receptors and at a certain point of use/time/amount the brain cannot completely recover.

    Ultimately it comes down to you have a lot of pain and are on a lot of opiates for along time so I would pretty much bet that if you were able to atleast purge your tolerance by switching to short acting meds and doing a 10-20% dose reduction for say 3 months you would get use to dose Drops causing mild w/d and be able to tell if you feel better or worse once you stabilized before next drop. You follow? The point would be to see if symptoms improve meaning it is hyperalgesia or not. I was on the 100mcg fent patch and used OxyContin to switch to shorter acting and was only able to taper to 80mg daily before i c/t. My pain levels still get to 8-9+ But I feel better then I ever did on opiates. Hope this helps you.

  10. #10
    EndoSucks is offline New Member
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    Thanks that makes a bit more sense.

    The 48 hour thing was based on a paper that had people on 4 day complete detox from upwards of 300mg morphine, and by 48 hours after finishing that detox, their pain had dropped, on average, by 2.3 points. So I'm guessing their hyperalgesia is pretty pronounced! But yeah, it took a good 5 days to get stable on a new fentanyl patch change.

    I did reduce to 100mcg from 125mcg and had no traditional withdrawal. Nothing. No craving. No shakes. No diarrhoea or nausea, no flu symptoms, no anxiety (over and above the concern I already had about being left in a worse state with no recourse, but certainly that didn't worsen). Absolutely nothing. I stayed there for 3 weeks, and my pain was pretty constant. The current 112.5mcg dose increase has helped a bit painwise, probably unsurprisingly about halfway between the 100 and 125mcg, but I'll see the GP in a couple of weeks and see about swapping to an oral 12 hour prep. Thing is it'll probably have to be morphine. They aren't so keen on oxycodone products in the UK. And part of why I stayed on fentanyl was that it was more effective than morphine for me. With 12 hourly meds, pain tended to start breaking through at 8 hours, which wasn't fun. But we'll see how it goes.

    Thanks for the feedback.

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