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Fentanyl Withdrawal...Any suggestions??

Posted , 11 users are following.

leigh65923
leigh65923

I have been on the fentanyl patch for over 15 years for neurogenic pain associated with MS.  I have decided I would like to decrease my dose from a 100 mcg patch every 48 hrs to every 72 hrs, but I am having very little  success.  The withdrawal symptoms I experience are just awful, I get just horrific leg cramps that I cannot control, they are just a nightmare, so painful that I cannot describe them.  I get the stomach problems and tiredness and constant yawning, those I can basically deal with, but the leg cramps are so hard to tolerate that I change to a new patch as soon as I feel as if they are about to start.  It is hard to believe that aI get such bad withdrawal symptoms from just trying to add 24 hrs to each patch!

I am also very tolerant to the drug. A surgeon tried to use it for anesthesia for a simple procedure and it did not phase me at all, so I was awake through the entire surgery.  They gave me so much trying to put me into a "sleepy state" that I ended up staying in the hospital overnight because they were worried about the amount they ended up putting in me.

Is there anyone out there that has successfully gotten off a high dose and long-term use of fentanyl?  I am really regretting that I started to use it in the first place, but it is the only thing that has really helped my pain and allowed me to continue to work and drive and not be all "stoned".

Anyone with any comments or solutions I would love to hear from you!

3 likes, 76 replies

76 Replies

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  • jocelyne44618
    jocelyne44618 leigh65923

    Posted

    Hi Leigh, when I asked my doctor about coming off my 125 mg patch she said it would take over a year, when I asken how to do it  I was told that you cant just cut the patches in half,  I would have to take a small snippet olf my patch corner and then after a week I could take a snippet off the other corner and continue to take a small bit round and round again until yoiu get to the starting corner of each patch, then take a small portion again, she said thaqt it would take weeks/months to  cut bits off.  its not just a cut in half and cope  it will only work if you  take your time to come off the patch. it could take a year, because you have become tolerant to the patch, its important that you take it slow, or you could end up in emergency hospital  take it from somew one who has been on patches for 20 plus years, but because the phn has happened the hospital put my patch from 100 to 125 so now im back to square 1 again.  please take care.  gentle hugs  Jocelyne from Cambridge  England.   
    • dan6281
      dan6281 jocelyne44618

      Posted

      I was on 2-100mgc patches every 48 hours. I used the patches after an operation in which MSRA Was introduced into my blood stream. I used the patches for 13 years and was told that this is a drug you don't get off of you are a user for life. Let me tell you that is not true. I just removed my last patch about 4 days ago. I first dropped from 200 to 75 in one day, not fun. Then I dropped it completely about 15 days later, reducing the dose by cutting my last 100 patch. It's hard and painful but you can stop.
    • melissa7471
      melissa7471 dan6281

      Posted

      You didn't have withdrawal symptoms? The restless legs, etc? Or were you on rapid detox? I'm on 100mcg now, then I start decreasing in Oct to 75mcg then Nov 50mcg Dec 25mcg, etc. it's a plan I devised myself. I've been on patches 11 years. I'm so happy for you that you aren't under the gun any more! Good for you. You are going to be my inspiration going thru this!

      Melissa

  • jocelyne44618
    jocelyne44618 leigh65923

    Posted

    Leigh  sorry just read my message to you  what I meant to saY WAS SNIP OFF ONE TINY BIT OFF ONE CORNER THEN THE SECOND WEEK  CUT A LITTLE MORE OFF THE CORNER 1ST WEEK PLUS A SMALL AMOUNT OFF THE SECONT CORNER, THEN WEEK 3  CUT OFF A BIT MORE FROM THE 3RD CORNER AND INCLUDE THE OTHER TWO CORNERS AND CONTINE ROUND AND ROUNG MAKING THE PATCH REDUCE IN TIME AS THE MEDS IN THE WHOLE PATCH.  THATS WHY IT TAKES A YEAR TO REDUCE YOUR MEDS  TAKE CARE jOCELYNE  CAMBRDIGE  ENGLAND
    • leigh65923
      leigh65923 jocelyne44618

      Posted

      Hi jocelyne!

      Thannks for the input and the support, I do appreciate it so much.  Unfortunately I use the patches with the reservoir (Watson brand) so I cannot cut them.  I tried the ones you could cut and was terribly allergic to the adhesive and also noticed a HUGE drop in the amount of drug that was getting into my system according the the withdrawal symptoms I started to get as soon as I started to use that kind.  I am not the only one I know that has noticed the large difference in drug delivery between the patches,  I am surprised they are considered equally effective.  I have been overwhelmed and humbled and thankful for all the support and good wished I have received since my post.  You are the first to get my "Thank you" and God bless you, I wish you the best.  Leigh

  • harvey81891
    harvey81891 leigh65923

    Posted

    Hi Leigh

    I was on Fentanyl lozenges and nasal spray for 3 years on very high doses, i was dependent following it being prescribed for cancer pain control but after a few months the drug had me in its grip and would not let go. I went cold turkey with the help of a drugs charity , the NHS who got me hooked on the drug without any warnings were entirely useless in helping me get off. If you can reduce the drug slowly then fine but you will find your self in a very protracted state of withdrawal for a very long time. 

    The drugs charities use an agonist in the first few weeks of total withdrawal which masks the effects to a certain extent of the noradrenalin causes the inhumane withdrawal symptoms. The drug is called Britlofex.

    Fentanyl is a nasty drug and a rubbish painkiller , it is rare to find any one who want to reduce because the body is screaming for the stuff and will convince the sanest of individuals that it is good for them. 

    I now have my life back, i experience real emotions, no mood swings or compulsive behaviour.

    The fist 2 weeks of withdrawal are hell followed my months of extreme tirdness. It is worth it.

    good luck

    Harvey, Cambridgeshire , UK

    • jocelyne44618
      jocelyne44618 harvey81891

      Posted

      Hi Harvey, I notice that you live in my possible same area, may be we could meet some time for a chat and help put the world to rights.. You mention drug charities, who/where do you find them,?  sorry  what /who is an agonist  Im very blind to this  now as I am suffering with PHN, my life seems to be tumbling down.  Jocelyne  Cambridge  UK 
    • harvey81891
      harvey81891 jocelyne44618

      Posted

      Hi 

      The dug charity that got me off was called 'Aspire" and based in peterborough near to my village and an agonist is something that disrupts a response of a receptor as I understand it. Basically whatever opiod you are on at whetever dosage eventually your endochrinology is going to cease to make the naturual dopomine and endorphine which are needed to keep in balance with the Feel Bad hormone , noradrenaline. The drugs replace that balance and the body no longer produces feel good hormones.The problem with Fent is that it is so concentrated and pure that it does the job of shutting down your natural system quicker and better. An agonist with slightly interfer with the ability for noradrenaline to cause massive anxiety to the point where it hurts, a lot. 

      anybody here who is still on Fent has know idea how much there personality has changed, just ask someone close to be honest. The news will hurt.

      I am happy to help but lets start with a phone call (is there a private message thing on here? ) as we are the other ends of cambridgeshire.

      The first thing is to accept that Fentanyl offers no solutions, not even for decent pain releif. Sure the first hit is amazing, then after a month amazing mixed with a little anxiety then after three months a whole lot of anxiety with very little upside... I only know of one other person who got off Fent and she is know having the most amazing and successful life.

      best

      Harvey

       

    • leigh65923
      leigh65923 harvey81891

      Posted

      Thanks so much for the support and information.  I have actually found that the fentanyl works well for my pain, but I have been on it for so long that perhaps I am imagining that?  I do understand about the receptors  being messed up with such long-term use.  What I face is this:  If I am going to be forced to stop using fentanyl I want to start the withdrawal process now, on my own.  But, I must say, I am amazed at the physical symptoms it has brought on with just adding a few hours to each patch.  My body is certainly not happy with it.  Moodiness and headache etc., I expect to face and deal with, but when my legs start flailing around, that I cannot take!  Thanks so much for your input and support.  I wish you the very best in your battle!
    • bugmann
      bugmann harvey81891

      Posted

      Harvey

       

      That's some awesome news.  Some partial  agonist such as Talwain would send a Fentanyl user to the hospital. Its definitely a tough drug to kick, I think Anti anxiety drugs like Valium are helpful short term as they have a 1/2 life of 100-200 hours and that makes stopping them easy but it makes the suffering much less when trying to  get off Fentanyl. I do disagree Fentanyl is an excellent med for severe around the clock pain, I do think its more appropriate to give this to those who will die from their condition then the DT's are not an issue.

       

      I am very happy for your friend who is living a great life. My disability is permanent and there is no cure so the best they can do is make me comfy, and for that reason I believe this Patch is an excellent choice for me. I wish you luck with your attempt and its one day at a time and you will always be connected to this drug it takes will power and determination and your PCP who really cares for your best interest to win with comfort.

       

      GOOD LUCK my Friend

       

      BUG 

       

    • harvey81891
      harvey81891 bugmann

      Posted

      Appreciate your concern but I have been off Fentanyl since October 2014 by the method I described.

      It was very hard and If you beleive in Fent and it helps with constant pain that in itself will derail attempts to come off. In my case it was nothing but dependence for pain long gone.

      Hope you are not too uncomfortable... very best wishes

      H

    • bugmann
      bugmann jocelyne44618

      Posted

      Dear  Jocelyne, I went to the top where it says messages and i have NO messages. I clicked your envelope from your message so I hope you get my prrivate message then just copy and paste your message back to me

      I am still new to this site so tell me if i did anything incorrectly 

      BUG

    • bugmann
      bugmann harvey81891

      Posted

      Hi Harvey Good for you I am happy to hear you 1) no longer need fentanly for terrible pain and 2) Have gotten off Fentanyl completly. You are the only person I've ever had contact with who has removed themself from the drug

      Thank you so much Harvey you are most kund and considerate.   I think I get more frustrated with our Work Comp system with the State I was working in New Jersey as it permits employers to get away with anything. I got flushed through the system got total disability, because i was lucky to find a WC expert in law who cooould not get me fixed but made sure I got paid for the rest of my life. Sadly I was in pain for many years  before I got ekigibke for Medicare then i got a ride3r plan and finally could see real Drs. WC disabled me for a herniated disc at L3/4 however the issue was for mny years I had a flapping piece of dic the size of my thumb and it would get stuck in my nerve root sleave causing pain so terrible I broke 6 teeth out of my mouth during one attack. I learned they at NJ WC dismissed the flapping disc as a shadow and thats why they use the least powerful magnets for MRI but I dont know how the mylogram misswed it. All my Drs could see it even non surgeons. I had an experimental procedure then called IDET where they burn the nerves away from effected area,after about 1 more year of being bed ridden due to pain and pain down L leg it began to feel better and learned to walk again   however like we all shed skin as well as disc material when I shed disc material I shed chunks and it got lodged in a fresh nerve sleave leaving me no choice but to have a Lamindectomy @ L4/5 then one more 2 years later same spot then got tired of it when it retiurned and got fused with hardware. Our Doctors are the best in the world and I am impressed with what they have done for me wioth so much nerve damage waiting to real real Dr's I could go on and on but I tank you for all your concern shown to me the USA could use more folks like you in this country as this country is changing and not for the good of things

      You take good care

      Your pal

      Marty aka Bugmann

       

    • deb73201
      deb73201 bugmann

      Posted

      Hi  good to know your back is better . I was hoping that you can help me understand coming off Fentahyl .  I have been feeling like this is not working for me anymore and the Doctors just don't seem to care . I have been on Fentahyl 100 for about 5 years and now I want to get off I have been so sad and pain is still there but is is ever going to be better they say no . So I said why take something that makes me feel unhappy sick the heat in AZ not fun with a patch . So I am going to come off due to I really need my life back . I have a knee replacement and 4 surgerys  later with the infection there is nothing they can do . I am going to do the patch for every 72 hours then drop to 75 for a bit then 50 then 25 and out . And also try to stop the dilaudid as well . Wish me luck 

      thanks for letting me know how you did !

    • john29217
      john29217 harvey81891

      Posted

      Harvey,

      I like reading your input because I appreciate your blatant honesty. Statements regarding personality changes while on Fent are things that I didn't want to believe; now that I'm walking down off this drug, I can see what you are saying is true. I look forward to feeling "raw emotion" again. While I have considerable more pain, I also feel like I'm leaving the fog. Thanks again Harvey

    • Actiquser
      Actiquser harvey81891

      Posted

      Hi Harvey, First let me say you have done amazing quitting all these drugs and I am looking to you for guidance and advice if I may.

      I too have a similar history with cancer though to be terminal and Fentanyl patch and lozenges and Actiq and have difficulty finding anyone on Abstral the lozenges. I am being supported by a drug charity in the uk and am finding the taper too slow and the protracted state of withdrawal not satisfactory, so like you went cold turkey from the fentanyl lozenges but still have the patch so could not use an  agonist.

      I have the horrendous sweats, diarrhoea, random pains, want to eat sweet thing constantly then feel nausea and are sick, gross lethargy etc but the worst is the cravings. Since I still have the patch the agonist drug is not suitable.

      I assume you stopped everything together if you had Britlofex or did you taper the lozenges first. My Drs are all insisting I taper the absral/Actiq first, then the patch.

      Please any help you can give me would be most appreciative. How did you deal with the cravings. They are the worst. You are so correct when you say it convinces the sanest of individuals that it is good for them.

      What did you do for alternative pain management or was it not necessary?

      How are you now please?

       

    • harvey81891
      harvey81891 Actiquser

      Posted

      Hi I am fine now but it has been a slog 

      Might be better to have a phone call to discuss if ok with you? i will figure out how to use private message to get it to you

      cheers

      Harvey

    • harvey81891
      harvey81891 Actiquser

      Posted

      Seems I cant send a private message so I will share my thoughts here. 

      I beleive that tapering just prolongs the inevitable at the same level of pain and anxiety. I tried tapering and it was nearly as bad as not tapering.

      The reason I beleive it not to be much use is that it is just as possible to become dependent on co-codamol as it is with fantanyl which is stronger than heroin. I beleive that once the body is expecting fake opiates of any strength it stops producing its own equivalent. So at what point would the fentanyl dose have to be reduced to trigger production again to give balance to the noradrenalin?? lower than co-codamol? could a dose of fent ever get that low? 

      I do not see any reason why the britlofex would not work in this complete withdrawal but i understand why it would not work in a taper. Then you are going to have 24 hours of hell... a futher 48 hours close to it.... and a terrible week. Followed by 6 months of tiredness which may be helped by testosterone therapy. Opiates kill your ability to create and recognise testosterone and without it guys suffer weakness, tirdeness and lack of motivation. it took me a year to discover this and after help from Dr caruthers   

      in Harley street the NHS have decided to continue treatment, very begrudgingly. I now have TRT and feel a lot better and get myself into the gym nearly everyday.  

      My advice ? enjoy august and prepare yourself metally and physically for going clean. Quit everything in september and ensure you have access to nothing containing opiates and expect to feel great in the spring and start your life a new. Watch your eating in detox because you will crave food, stay active and cut out meals otherwise you will put on a couple of stone like i did.

      BTW I have or never really had after 3 months post surgery pain issues . This month I have my 5 years all clear from cancer.

      All is good now.

    • Actiquser
      Actiquser harvey81891

      Posted

      Hi Harvey Thank You so much for the prompt reply, like you I was unsuccesful with the private massage.

      It must be a lovely feeling getting your 5 years all clear and being Fentanyl free too. Well Done. I get my 5 years in October this year too and it would be lovely to be Fentanyl Free as well.

      I began to feel the taper was just a repeat of agony every 2 weeks just prolonged the agony and anxiety as you say. Also the anticipation every 2 weeks if the tablets would be there in time and suddenly felt better when I wasn't thinking about whether the tablets were there was a free feeling, so they have been ditched. I thought I would leave it a while to see how I was before I do the patch. I will do as you say enjoy August and start in September. Lethargy is my big problem. My appatite for sweet things is big which is part of the withdrawals and I have put on half a stone which is amazing for me, as I've had most of my small bowel removed as a side effect of radiotherapy, I eat very little and absorb even less. Meals are tiny if I have them and they are not a daily occurance. I rely on ensure drinks and supplements, this is a major step for me as I was fed intravenously for 3 years as I was unable to eat/drink.

      I dont think i

      I'll need the TRT as I am female, going to the gym is not for me as I have mobility issues which is sad as I use to cycle daily and was very active.

      I shall take on board to quite everything as I am supposed to take codeine daily for my gut along with 12 Loperamide daily. I hate codeine.

      Was it Abstral you were on ? I was taking 500mcg x10 a day which was ridiculous and not surprising I crave them.

    • harvey81891
      harvey81891 Actiquser

      Posted

      You have really been through a lot. I lost my rectum through rectal cancer and have a full colon. I irrigate every 48 hours (ish) and frankly dont even think about it much. its quite easy and I live a normal life in every respect, probably more so than most other guys in their early 50s.

      I was on actiq 6 x 400mcg but then they put me on nasal sprays at the same dose but the absorbtion was much higher so they inadvertantly raised my dosage. I can remember after some business dinners and alcohol being very close passing out and not really caring if a did, would maybe take an extra one just for some release from the paranoia. When I look at michael jackson and prince i often wonder how close I came to never waking up. 

      I am told that to get your system shocked back into fully function you will have to give up the codeine. Ask them for an alternative. 

    • Actiquser
      Actiquser harvey81891

      Posted

      You certainly have had a lot too. Yes the abstral, actic was good it got me to the nodding stage it was so high. I have no problems giving up the codeine I dont like it. It has only been recently introduced and what I should have used in 1 month is now ito the 3rd months use as I don't take it that often. The drug councillor I have indicated I was "abusing" it as I didn't take it as prescribed !!! supposed to be 60 mg at night. I'm lucky if I remember to take 30mg alternate nights. I just dont remember to take it, so it will not be missed. Its only to stop me going to the loo at night .

    • Actiquser
      Actiquser

      Posted

      Hi Harvey,

      I'm down to 12.5mcg fentanyl from 50 with a taper at each patch change next change saturday which is patch off........

      I have a little stash of comfort diazepam 2mg from Gp if needed as I felt so sad for an evening and was upset dont know why must be low seratonin level now 17 days of all oral fentanyl.

      I'm glad you have your life back. You have inspired me to keep going at a fast rate.

    • harvey81891
      harvey81891 Actiquser

      Posted

      Hej well done you!

      Remember when you jump off finally just trust that your body will resume its function in about 24 hours to make its own endorphines.... It's going to be tough for a short period but very worth it!!!!

      Take care of yourself for the next few days and do not drive if you are on the diazepam .... I did on day 3 ... A story for another time .

      Keep me posted , nearly there

    • melissa7471
      melissa7471 harvey81891

      Posted

      Harvey

      You are an inspiration to both of us. I'm down to 50 finally but the last 3-4 days I haven't been functional at all. Tonight is better, so I'm thankful for that!

      Melissa

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