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!
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.
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
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
I have been on Fentanyl Patch 300mcg/hr for about 8 yrs and on the patch for 15 yrs total, for severe low back pain, arthritis, and incurable Leukemia. I have been told this is the hardest drug to come off of. I do not use narcotic rescue meds or my patch would no longer help at all. Of all the people I know of the best they could do is get down to 25mcg/hr patch.
I must agree with the others who say take it slow, and tell the Dr who gives you the meds what your plans are and why they may have a better plan than us who suffer from painful illness.
In my pain ctr those who try or are forced to come off the patch are reduced by 25 or 12.5 mcg/hr every 2 months until D-Day when they no longer are on the patch but those who are forced off them for failing drug tests or other reasons end up seeing an different Dr and get back on something and those who want to come off them cant and ask for the 25 mcg/hr patch again????
I do wish you well in your choice and it will take all the will power you may have but just like stopping smoking cigarettes you keep reminding yourself why you want to quit and the moments will pass and hopefully in time you will not have any moments GOOD LUCK
BUG
PS: Also of Dr's of Anesthesiology who abuse drugs Fentanyl is their drug of choice. I guess the immediate release form of this drug has the desired effect like heroin to an addict??
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
Leigh, you are biting off a big chunk to do on your own. I am currently on a "walk down" from 50mg every 48hrs to lesser amounts, but still every 48 hours. I have gotten down to 12mg and while I'm proud of how far I've come I'm definitely at a roadblock. I have all the symptoms you described with the addition of terrible headaches and extreme hot & cold snaps. Sometimes I wonder......."In 4 years I've never abused this medication, why in the hell did I want to get off these drugs anyway?".....I think you are noble for trying to do away with the medical handcuffs that so many of us are dealing with, but you've got to be easier on yourself. You were prescribed this medicine for a legitimate reason; my suggestion is to get some help from a professional who can help you reduce your intake at a reasonable rate. Honestly, I'm re-evaluating if I'm going to go much further. You're not a bad person or the social pariah that the media and pop culture makes us out to be. I wish you the best, be good to yourself, you're in my thoughts & prayers.
Great post and helpful to me!
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
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
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!
BUG,
lost my text to you, don't know if you got it or not. Am not sure what happened. My old clunker of a laptop hiccupped I guess. Anyway, at the risk of repeating myself....I am not familiar with the term "narcotic rescue drugs"...could you please enllighten me? I will keep this short as my the text I lost was getting very long. Thanks for your very helpful post. I am so appreciative of everyone who has replied and wished me well on my quest for getting off of the fentanyl. And actually, the first doc I went to for pain control was an anesthesiologist and she did tell me that fentanyl was a favorite amond her "peers" I guess they should know what the best is!
John, thanks so much for your kindness. I must agree with you totally. My initial idea was to get off the fentanyl completely. But when my doc did not offer a replacement med AND the dificulty I had the very first month trying to just add a few hours to each patch, I changed my mind a decided to just stay at the dose I am at for now and try to get down to every 72 hours. But I am just horrified at how my body is not tolerating the extra hours at all. I like to think that if I had known what I would be facing someday I would have tried harder much earlier in the game than 15 years on the stuff. I think fentanyl is in every cell in my body and every cell fights any decrease in the level it likes. That might sound goofy, but wow (!!) I never imagined it would be this hard. I took myself off of valium many, many years ago and had no problems like I am having now. That was a walk in the park and withdrawal from valium is supposed to be able to kill you. It did take me a year, but still, I must say I am very frightened by what I have been experiencing with the very little decrease I am attempting. The idea of being put to sleep for a few days and filling my body with antagonists sounds pretty good at this point, but I am afraid it might actually kill me. Sorry, I don't mean to whine. I wish you the very best in your quest. Thanks again for being so kind to me. God bless you.
Dear Leigh65923,
I am happy you wrote here as I didn't receive your text.
I completely understand your question and can explain. When a chronic pain patient is treated with narcotics they are typically treated with a long (slow releasing) acting narcotic to keep a steady state or steady level, of medicine in their blood. However there are times when this chronic pain patient has what is called "break through" pain and the slow release medicine is not able to control the break through pain thus some Drs prescribe a fast acting ( fast releasing) narcotic called a rescue medication. However the draw back of using rescue medicine is the slow acting narcotic will become to weak MUCH faster thus requiring the slow releasing narcotic to be bumped up because the same drug is usually used but in different releasing actions for example Duragesic would be a steady releasing drug or slow release drug and Actiq would be the rescue med for breakthrough pain.
This is in laymens terms to make it easier to understand.
I hope this helps.
Marty aka Bugmann
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
So, in other words I am really screwed because I take 1-2 7.5 hydrocodone every 4-6 hr for breakthrough pain in addition to the fentanyl? I have never had much of a problem if I don't take the vicodin for 2 days or so, but this all has me thinking I am in for more problems than I ever imagined. While MS is not fatal, it is not curable either, and tends to progress as the years go by. My main symptom is pain. Oh well. Thanks so much for the info, it cleared things up for me.
John I was reading and working on a reply to a message I got from you but today even from the email link, I am unable to locate your message????
I have a real good idea about how you felt while attempting to stop the use of fentanyl. I did a Morphine pump trial where they insert a cath into the epidural space as close as possible to the pain site cover the insertion with a Bioclusive wound cover and they adjust the pump to give you the level of pain relieve. This trial failed miserably!!!
When I returned for follow up I said the pain control was terrible, but while I was in hospital they were pumping full Lorazepam, of 8 mg a day, and I was beginning to have DT's. So the pain Dr gave me Lorazepam for my DT's. In a few more days I called him back to say his 1mg 3X a day was not helping my DT'S so he kicked me 2 mg tabs 3X a day. Well I roughed it out for 13 days of the 14 day trial and just said give me back my patches.
Depending on ones dose like mine 300mcg/hr ev 48. If I went cold turkey I would die from the shock of what the absence of Fentanyl will do to me after all these yrs using it at the max dose. Yes some pain meds like Hydrocodone and Oxycodone DT's begin to improve and a day or two but not Fentanyl, its a different animal than the others pain killers. The lower ones does is I feel the risk of danger lowers. I always wondered if that 24 hr detox under anesthesia works, but my Dr said I would need to be clean for at least 6-8 months before I could begin near the beginning of Fentanyl therapy. No thanks I dont think I can can take 6 months of that pain from all the hardware in my back, arthritis, and cancer I have currently .
Please let me know how you make out as time passes
Marty aka Bugmann
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
Hi Ive sent you a private message click on the envelope to read Jocelyne
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