Anyone "Cold Turkeyed" from the fentanyl patch?
Posted , 9 users are following.
Hi I'm curious if there has been anyone who cold turkeyed from the fentanyl patch and if they did, what was it like with the withdrawal and how long they lasted?
The reason I ask is it seems very variable when people taper what their symptoms are. Some appear not to get many withdrawal symptoms at all and other seem to really go throught it during the taper and also at the end. I realise its difficult to compare as everyone seems to do different things as the medical staff do not have a lot of experience getting people of this highly addictive drug. Does everyone suffer when they finally stop?
I found coming of the oral Actiq not to bad (I've had worse with my cancer treatment) but my mental cravings are awful. Physically I've had diarrheoa, pain, lots of sweating, lethargy and headaches, the worst is the mental cravings just to feel "right". Having said that I am a lot clearer in my cognative ability and like that rather than the fentanyl fog. I guess its the feel good factor I miss which is the addiction part or else loss of seratonin in my brain. I still have the patch so that may be my my withdrawals having included RLS etc.
Any thoughts anyone please?
0 likes, 35 replies
Cal01 Actiquser
Posted
Dear Actiquser,
Yes, I did cold turkey withdrawal on Fentanyl Duragesic patches because my medical insurance STOPPED. I went through withdrawal on Fentanyl a few years ago. I was living in Texas and had medical insurance and was on the Fentanyl patch 75mcg for about 4 years. One day the medical insurance stopped. (another story - but if you don't have medical insurance in the USA - you basically die). So, I went cold turkey on the Fentanyl. It was the most unpleasant experience of my life. But I'm not responding to whine about it. I'm responding to tell you what helped me get through what were the worst 4-5 days of my life. There was a forum in the USA regarding people trying to quite the Duragesic patches. Many had to quit for the same reason I did. No medical insurance. If you're going to 'cold turkey' this - you will need a friend you can trust. I mean this in all sincerity. Ideally you should be weaned off it in a hospital. But, I couldn't so I reached out to forums and got some pretty good answers. Bump up your vitamins. Especially the B COMPLEX.Have plenty of fluids on hand. I found really good orange or grapefruit juice to be the most tolerable. Start with water though because you will vomit in the early stages. My withdrawal was a cold stop from 75 mcg. I thought I was going to die. I had a fever of 103F, was sweating profusely, could not lay down in bed because I kept rolling around in a fetal position, hoping for this to GO AWAY.
There are many people for support on various forums. I will relate as much as possible on my withdrawal of Fentanyl. Make sure you are close to a bathroom. You will have diarrhea and vomiting. Sorry if that is quite blunt but it is true.
YOu will feel like you are losing your mind. Like you are on the worst acid trip of your entire life. No, I'm not a druggy, but I did LSD a couple of times in college and it was NOT for me at all. It was just too powerful for me and I found absolutely NO fun in it at all. Try and have your friend 'monitor' you and watch your fever. I had to get into a bath tub full of ice water to get my fever to drop within tolerable range. I won't pussy foot around this. It is a terrible withdrawal.
To me, it felt like I was turning inside out literally. There was absolutely no way I could drive or look after myself for about 4 days. The first four days are the worst - or rather they were the worst FOR ME.
I wish I would have had a little bit of Fentanyl left just so I could WEAN myself off it, but I did not.
I truly wish this on NO ONE. I'm not trying to scare you at all. Just make sure you are in a safe place, with access to 911, if you need an ambulance, and a good friend you can trust, and plenty of fluids and towels. I slept on the floor. It seemed better than bed. The bed made me feel like I was being suffocated.
Go easy on just luke warm drinking water at first. You're going to lose most of your electrolytes, hence the orange juice, or some type of 'clean juice'. I think Gatorade or the like may be too much at the start. It was for me. I vomited it all up the first time I tried it. Remember you are losing bodily fluids at a rapid rate. You are dehydrating. You NEED WATER. ANd EASY ACCESS TO IT.
So, you need a friend if you are doing this alone.
Please feel free to ask ANY QUESTIONS and I will give you straight and honest answers. I went through it, and I made it. One of the toughest things I've had to do in my life, but IT CAN BE DONE. For me the WORST was the first 3-5 days, but it does eventually get better, slowly. A DR had prescribed the Fentanyl due to a botched back surgery. My pain management has changed drastically. I am on a low dose of Dilaudid, Cyclobenzaprine, and LEGAL DR approved medicinal marijuana. I only use the marijuana late at night when I can't sleep from pain.
I will never go on Fentanyl again in my life. It is too dangerous - ESPECIALLY if you have the chance of being cut off COMPLETELY from medical insurance.
I hope that this helps you in some way.
Cal
Actiquser Cal01
Posted
Hi Cal,
Your experience is horrific. My cousin was home for a visit from Texas in August and she was explaining the situation re medical insurance which is awful. Here in Uk all health care is free at the point of delivery and in Scotland all prescription drugs are free also.
Thank you for your response. It has been most helpful. To stop drugs like fentanyl dead is inhuman. I do not beleive Drs understand withdrawal due to lack of experience and empathy. That is also my experience. I had on occasion run out of meds and had to wait 2 days on refills and know what thats like.
I did a quick taper from 10 x day actiq the oral form of fentanyl to 4 x day which is the max recommended daily dose and stopped dead but still had a 50mcg patch. Withdrawals were bad at this stage total anorexia for 5 days. Had 1 day and night with constant vomiting and severe abdopain like I was obstructing should have gone to hospital but didn't. The sweats and cold episodes were constant. Diarrhoea despite loperamide.So spent time in bed next to the bathroom. Worst was days 1-3. 10 days after dropping the actiq I tapered the patch at each change 50, 37.5, 25, 12.5mcg then off so a 12 day taper and still had withdrawals during and at at the end. first 3 days were bad. I am a week now and still sweaty/cold and sweaty on exertion to do anything. My taper was to go on till the end of the year but I was in a constant withdrawal stage throughout so just wanted it to end so went cold turkey at the 4 atctiq and as soon as I felt I was over the worst of that started with the patch. I have taken the vitamin supplements, did have diffficulty with hydration and spent time in bed and lying on the sofa. I see a drug advisor weekly who is a great help. How long did your withdrawals continue. By that I mean the sweats, the cravings and just the sad/feeling down low in mood feelings. These feeling are not constant but hit me for an hour or so and hard to shift. I take 2mg diazepam for that.
Do you feel your new pain management is better than the fentanyl?
I do not think the fentanyl was doing much for me other than a feel good factor.
Actiquser Cal01
Posted
I forgot to say I felt the best support I got was from these forums where I can relate to others going through similar situations or having travelled the path already. These folks are so realistic compared to the Drs who only theorise and are so out of touch.
I thank you for all your help and send you good wishes and lots of warm hugs xx
Pointer99 Cal01
Posted
Very good description of Fentanyl Cold Turkey (I went cold from 150mcg patches). Thank God we have the National Health Service here in the UK, so no-one needs medical insurance!! I feel better about payin my tax now LOL!! I just wanted to add one thing. This may be just me, but I found that Coca Cola (or Pepsi, etc..) helped. I kept it down better, and did felt 1% better from the sugar in it. Remember that if you drink fluids (and you MUST, unless you want to add renal failure to your list of ailments), even if you vomit every time, SOME of the fluid will have passed into your system, so keep drinking and vomiting rather than not drinking at all, which in extreme cases could be fatal.
Also the bit about having a friend nearby is soooo true, it is as important as any medication to help. For me it was my parents (my mum especially who is more or less my best friend anyway).
kaboom Actiquser
Posted
Hello to all
OK this is for anyone that wants off the patch aka fental
ok I've started something with the company that makes it
to help people to come off the patch Sandoz and I are working on
a response to helping people to get off of the patch for good
OK first you need a doc that's willing to work with u and blood
work every 30 days anyone that's on the patch and wants off
of it listen up here's the best way to get off of it
so far
U take 1/16th off the patch yes cut it work ur way down
so every patch u put on so meaning 1/16th to 1/4 to 1/2 of
a patch and keep on small strip at a time untill ur next patch
then ur dose will be if u were on 50mcgs then ur next patch will
25mcg and u do the same as you did with the 50 and then when u get down to 12.5 do the same and when you get down to
a 1/16th of a strip left then leave it on untill it falls off you
will need break through meds but only use endcet 5/325
you can take up to 15 a day under a docs care and you will
need nasua scrip meds not over the counter
also oxys 5mgs instant release with the endcet and this is most
important the studies so
Show that low testrone will cause huge problems with trying
to get off of fental bc fental lowers testrone in men and woman
you need to be taking testrone androgel 5mgs to start for
men and for woman 2.5 every day for the next yr the company
sandoz and I are woking together with this idea it's worked for
me and many others im in canada so far it's helped the idea
Is that if ur body can build muscle again it will help with back
pain and all pain so to fight the w/ds yes u will
Have them and yes morning is the worst so I hope this helps
Cheer
boom
Pman Actiquser
Posted
After a back surgery I was on Norco 10's and Soma 350's and moved up to fentanyl. I started at 25mcg and went to 75mcg. I am a military vet with two tours and fentaly withdrawal cold turkey lasted 6 hours before I put a patch on. I'm on a cadre of other meds for PTSD and the withdrawal was like facing the gates of hell and woke up many times with flashbacks of my past included. I have a private pain doc and see the va for PTSD. My Dr and a nurse were versed in patients requiring this medication. I was told by 3 medical professionals that this med is 50 times stronger than heroine. It hits the pain block receptors 50 times faster and 50 times more addictive than heroine. This medication has its use and I am hoping never having to take this drug ever again. The first month and a half was hell. Nausea, vomit, diarrhea, depression, the feeling of uncontrollable and incomprehensible anguish. It's now almost two months and I woke up the last two days feeling wonderful and actually smiled. I didn't have to vomit. Damn I hope this is the end. I had a few good days three weeks ago and the hell came back. I should have really researched this med. Pharmacists, pain dr, other doctors didn't have a good remedy for weening off. The goddamn wrapper and box only tell you how to get apply. I drank a lot of water, ate fruit and toast. Forced myself to move and keep active. I doubled my Clonapin use that helped. I've been on this for over a decade and will take it the rest of my life. Benzos work but are deadly if you're not already taking them. The best thing I could do was eat edibles. Serious. Cold turkey is hell the first 72 hours and depends on the person. I kindly beg anyone attempting to get off this drug to do so under the care of a well versed medical professional. I did/doing it my way and hope I'm at the end.
Pointer99 Actiquser
Posted
Hi Actiquser,
Believe it or not, I tried to cold turkey from the patched about 12-15 times, as I was so fed up with them. The side effects, drowsiness, living in a state of confusion, behind on settling bills, forgetting appointments and agreements... the list is endless. But every time the symptoms were so bad that I gave up at day 5, was my best shot. Usually at day 2 or 3. EXTREME tiredness and lethargy (I could not lift my head up of the pillow, often). If I did, I was dizzy and would vomit. The only time I could move was to get to the bathroom due to the diarrhoea. Yet I could not sleep for days in a row. If I dozed off for 10 minutes MAX, I would wake with a huge jump every time, like an electric shock, with a dry mouth and racing heart (at times, I honestly thought I was about to have a heart attack). I was sneezing 4 to7 times in a row, but dry, painful, burning sneezes. My lowere jaw ached, as if I had toothache in every tooth. I had horrible intrusive thoughts about loved ones dying, and the like. Almost any sound, even a car passing by outside (almost inaudible) was deafening. And of course, bad, bad pain in EVERY muscle, joint, down to my finger joints and toe joints. I think that covers the worst of them, but there were plenty more. Weirdly, nearly every time I tried, I had some common symptoms (nausea, insomnia, diarrhoea, extreme lethargy) but others (eg the sneezing, and jaw ache) would sometimes come on, sometimes not. Weird. I am now off the patches from hell, but I did it in a safe way, and it wasn't too bad. My advice is,
DO NOT TRY COLD TURKY!!! BTW, I was on 150mcg/hr patches for 5 years before my first cold turky attemp.
Mark.
Nasher447 Pointer99
Posted
Hi pointer99 sounds like you went to hell and back this is the worst I've ever heard,very well done for coming off them but you haven't told us how you managed it unless I'm missing your point. What method of the "safe way" did you use. Best regards from a fellow person desperate to be free of this toxic horrendous horrible drug. Nasher.
Pointer99 Nasher447
Posted
Hi Nasher447,
i honestly didn't post such a "dramatic" description in search of sympathy or anything, but with a drug this horrible and evil, I believe there is no point in sugar coating things up; I say it like it is (was!) so other people get an honest idea what to expect. And I'm sorry to say that I have, I think, read even worse accounts of withdrawals! But everyone is different.
i have posted a while back, how I came off, but here it is in brief:
i was admitted to hospital for something completely unconnected. I knew I would be in for several weeks.So I explained to the pain specialist doctors that I was trying so hard to get off the patches, but needed help. So together, we drew up a plan: the patches were stopped dead. Then, I was allowed to ask for OxycNorm, 20mg, two hours apart (but not less than two hours between doses). I also had some Clonazepam to help relax my muscles and sleep at night. I made sure I got the Oxy every 2 hours on the dot, as I was so scared of the withdrawals kicking in. Along with the Clonazepam, this did the trick. I felt like I had a cold on the second day with no patches (not even flu), and I vomited once, on the second day also. After a couple of weeks, I went to 15mg of Oxy every 3 hours, then 10mg Oxy, etc...!! I still have a lot of pain, and have some Oxynorm at home if I need it, but I rarely use it, only when things are really bad, I may take 10mg. I hope this helps, but just post or PM me if you have any other questions. And please, please remember this: Now, the WORST days I have (for whichever reason, not just the pain) are 100 times BETTER than the BEST days I ever had whilst on the demonic, horrible patches. Just by the way, it wasn't a detox centre or anything I was in, just a regular hospital.
please don't give up. Keep going, it CAN be done, hang in there and Please keep me posted on your progress.
very best,
Mark.
Nasher447 Pointer99
Posted
Hi thanks for prompt reply. You didn't dramatised it to strongly it is without doubt one of the worst there is. You were lucky in away that you were in hospital and the Doctors and team helped you. Perhaps there's something to think about. Why can't the drug companies offer this to people that have ended up so disabled with their horrendous drug. They should be made aware of their duty to patients to help us. Well done again to you and enjoy your fentanyl free life. David
Pointer99 Nasher447
Posted
Thank you David for you supportive comments. Yes it was a tough ride, both the misery of being on them, and all the failed withdrawal attempts. But worth every bit of it in the end, and I sincerely wish you all the best on your journey off this stuff, and as you say, to the fentanyl free life that awaits.
I agree entirely about making the drug companies at least partly responsible for this stuff, given the way it has messed up (and even taken away) so many lives. Trouble is, the Pharma world is a multi BILLION pound/dollar industry, and holds HUGE sway with governments, banks, and other major institutions, whether they admit it or not. So any attempt to confront them with these arguments, or threaten any sort of legal action, is simply crushed by their influence, power and money. I absolutely believe they, along with the medical profession, need to take far more responsibility for these actions, even if Dr's intentions are good, they need FAR more education about this stuff before prescribing it like candy.
Again I will end by saying, keep going, it can be done, and remember, nearly no-one gets into this situation overnight, so easy does it, expect to take time to get back off.
Mark.
Pointer99 Actiquser
Posted
Hello again Actiquser,
I know I've posted a reply or two already, but another question came to mind...
Can I ask which strength Actiq u were using, and how many per day? You are righ, withdrawal experiences vary hugely. Nearly all a horrendous though to some extent. Sadly this seems to be a common factor. I have only heard of very few people who came of with not much more that a flu-symptoms for a few days, compared to the many, many nightmarish stories posted (I've been there too btw).
I tried Actiquser for breakthrough pain for about a 3 months, and they did very little for me. Coming off them was no probs, but then I was still on 150mcg patches at the time. I found the Effentora Sublingual Lozenges much more effective,
Thanks.
Actiquser Pointer99
Posted
Hello Pointer99 I was on Actic then the sublingual Lozenges 500mcg x 10 a day so 5mg/day Fentanyl plus 50 mcg/hr patch= 1.2mg/day.
So I was a massive dose of Actiq / sunlingual lozenges compared to the patch. First I did a rapid taper from 10/day to 4/day then tapered the dose to 300mcg x 4/day and cold turkeyed. The patch was a 12 day taper and cold turkey. I have been off for 6 weeks now and still occasionally have sweats. With hindsight I would have prefered to go as an in patient and just cold turkeyed once. I have problems with hydration and food intake so I would have required an intravenous infusion. Having cold turkeyed x 2 The worst is day 3, then it improves, so it's do able, as long as there is no Fentanyl around. I don't miss it now and am much happier without it.
My pain level has now settled and it is worse without the Fentanyl.
After 3.5 years the Fentanyl wasn't really doing much for the pain and I don't want to be on opiates for life.
Pointer99 Actiquser
Posted
i agree that quitting must be done with no fent around you, or the temptation to get relief is just too big, in my experience.
Glad you have managed to get off this stuff, but one question, you say your pain is worse without it, is that right, or a typo? Just wondering.
thanks and all the best.
Mark.
Actiquser Pointer99
Posted
Yes you are correct Actiq is very short acting and I took them frequently. Pain is worse on movement now when I walk due to all my adhesions from surgery and radiotherapy and fractured vertebrae x3. But only marginally worse. Peripheral neuropathy in my hands has returned again but I'll cope . It makes me question what the fentanyl was actually doing for 3.5 years. The actiq just gave a boost and made me feel I could cope with the pain but never releived it fully. Nothing ever has, so I'll live with it now and I am happier without all the Fentanyl.
My Dr was happy to up the patch strength if I reduced the Actiq.
I did go through a period of hyperpain in my joints where I've had surgery previously and other pains but I had been pre warned of this. It would be bad for a few days then resolve. I just used a heat pad and chilli cream.
I think there was a cost implication for the Dr as my oral fentanyl was costing £300 a week as opposed to pennies for the patch. I now have Morphine if I need it but I don't absorb it so it doesn't work and I don't use it. I think if I was an addict rather than dependant I would be taking this now. I choose not to.
I am allowing 6 months to reflect on my experience and others before being in dialogue with someone senior in the NHS to discuss the use of Fentanyl in cancer patients with a view to having a policy on its use with referance to a withdrawal policy being implemented to support those wishing to withdraw with the option of in patient treatment. Hopefully this would extend to all users of Fentanyl. At the very minimum it will highlight this issue.
Ultimately all those that end up on Fentanyl tend to have very unique, complex health issues. If they wish to withdraw or are made to withdrw by their caregiver then an individual tailored programme to suit individual needs should be planned with the individuals consent. Support with councilling should be given at least weekly and inpatient treatment an option for all.
My final point is that thought has to be give by Doctors as to what happens should someone on high dose Fentanyl enters hospital for emergency surgery for intra operative analgesia. If normal doses are given then the individual who is dependent on Fentanyl will suffer severe pain both intra operatively and following surgery. This was one of the factors that made me want to stop fentanyl. It is the drug of choice for intraoperative analgesia. The normal doses used during theatre would not touch the individual on high dose fentanyl and leave them in pain.
I have read Kathryn Kemps book on "Painkiller Addict" and her journey of Fentanyl addiction but I did not find it helpfull as I did not relate to her . She was taking 60 Actiq a day and was addicted. It questions what the GP was doing prescribing them for her. Its worth reading to see if you relate to it. It does give a good insight into the addictive personality.
it will help to place you on the spectum of dependant ---- addict.
Happy Reading
Pointer99 Actiquser
Posted
Thanks for such a comprehensive reply; it seems we think along similar lines on many issues:
Due to my health issues, I am far more likely to need unexpected surgery than average. So I have long been concerned about the Dr's response in this case, and how my intra-and post - operative pain would be managed given my high opiate tolerance. This was one of the factors motivating me to get off the patches. I hope that fentanyl abstinence will over time lead me back to a degree of being opiate naieve, in case of surgery.
I was unaware though of the huge cost difference between different products, as far as I know, my Dr has never alluded to this. Interesting!
I have for a long time, though about having some sort of contact with the NHS and other "Powers that be", regarding the suggested use, prescribing, usage, and withdrawal of Fentanyl. The grossly inappropriate prescribing (in terms of dosage, not explaining the implications to the patient, and general poor management) by some GPs has staggered me. I have been to 'locum' GPs (a system my surgery operates) with responses varying from blindly issuing scrips for almost any number of patches I wanted, to fear and refusal to prescribe any. I have found it shockingly inconsistent. And VERY few GPs have the knowledge or experience to get it really correct.
The NHS needs far more across the board rules and guidance. Also (as you alluded to) I firmly believe Fent should ONLY be given to people with end-of-life cancer or other illnesses, or only in exceptional circumstances.
I was about 33 when first offered patches. I did NOT (thankfully) have a terminal condition. Neither did I know anything about Fentanyl, its potency, addictiveness etc. It was suggested by a pain "specialist" to my GP who gave it to me and proceeded to prescribe it in a completely wrong way, in the end robbing me of years of my prime of life.
Yes, there should be help, counselling, drop-in centres and even hospital admissions to aid withdrawing people. These could be NHS-funded, and perhaps subsidised by the huge Pharma companies who make the drugs, and also make billions of £ from them. Also far more education is needed. When in hospital once a few years back, I had to ask four or five times for my patch to be changed (it was all prescribed and ready, and it was due). As the hours passed on the busy ward, and withdrawals began to creep in, I had to get more insistent with the nurses. And I'm sure one of them looked at me as though I were a desperate addict, rather than a genuine patient who had become dependent. Another doctor said to me once, on cutting down: "studies show" (?) that a reduction of 30% dose per week is a perfectly comfortable way to reduce. I would like to see him test this out.
Lastly, have also read Catherine Kemp's book and I could not relate either. The 60-a-day issue for one (more awful prescribing practice) and (I word this carefully as I don't want a lawsuit on me or anything!) quite a bit of what she wrote didn't quite tally, FOR ME, with how someone in a similar state of withdrawal would act...