Fentanyl Withdrawal, it's cruel and you will need support

Posted , 9 users are following.

After 18 years on fentanyl I went off cold turkey which is not recommended.  This is the most inhumane experience I have ever had and anyone going through this will need support.  My experience..the time frame, the drugs, the side effects and what I did that worked.  I would like others to share the oddities and their experiences

2 likes, 9 replies

9 Replies

  • Posted

    Hi Carol, I survived the withdrawals over the entirety of last summer, and then some: May - September. I had been on the patch for about four years. Even weaning off by 12% every two wks near killed me. I took Clonidine for the sweats, benydryl, gravol, sleeping pills, acetaminophen with codeine, ibprophen, and basically laid on my couch under blankets with the a/c on the whole time, rendered useless except for operating my remote control. I could watch the same shows within a week with no recollection of how it ended or it's content.

    I thought I was over the worst of it, but then my stomach & intestines started giving me serious problems. I'm told you will only ever get 80% of yourself back after fentanyl. Have you suffered intestinal problems too?

    • Posted

      Hi Kris,

      I heard many people were suffering with stomach issues.  I did go through a short time of diarrhea but maybe a week or 2.  I had read so many posts that seemed to suffer greatly.  Now I have gone the other way but am still on vicoprofin so that could be part of the problem.  Not that I feel constipated, I just do go for a week at a time.  Weird.  Fortunately I just had a colonospy and there were no issues at all.

      I assume you were using the film patches that you were able to wean off or maybe you were using multiple mixes of the gel patches.  Had I know earler about weaning by cutting the film patches, I may have had a easier time.  I just pulled off that gel patch on 11/3/16 and have not gone back.  I will say that now that it's been over 10 weeks, most of the withdrawal symptoms are tolerable.  I don't sleep but never did much.  I'm always tired but make myself do a 30 minute workout almost every day.  My mind is clearer and I am back at work.  I think my cognition is OK. 

      I do take a tums every day, more for the calcium and drink tons of water.  You need to flush those toxins.  I also ended up with 2 weeks of flu and then 3 weeks of upper respiratory infection after going off the patch.

      The reason I am only getting 80% of myself back is because I am now dealing with the pain again that sent me to the patch.  I fould that so many people on these forums have ideas and I try them all.  I make a note of what works and what has no effect.  Even with the no effect stuff, something I continue if it can't hurt me like Magnesium and CoQ10. 

      If you are off, my sincere congratulations, and you can't go back now.  You don't want to start all over.  I don't know if over the counter pepto and such will help coat your stomach while you continue to cleanse your system.  Keep drinking those fluids.  Hang in there and keep reading posts.  Someone may have found an identical situation and found a remedy.

  • Posted

    I have what may be a slightly odd perspective on this. Like most, if not all, contributors here I was prescribed Fentanyl for pain relief - in my case after two episodes of acute pancreatitis which seemed to then become chronic. I have to say that to a large extent it worked.

    Where I might differ is that I had a long history of addiction to opiates before ever using Fentanyl. I had already gone through Heroin withdrawal a number of times 'Cold Turkey,' and was almost twenty years into the misery of Methadone addiction when I was given Fentanyl.  At the time I doubted the wisdom of the prescription, but asked if it might actually lend me the opportunity to finally some off Methadone; I was firmly told the two things were not interchangeable and it would make no difference.

    About a year into Fentanyl I had really had enough of being on Methadone - which is incredibly hard to stop. I did stop, completely, without further reduction although my dose was by then relatively low, and I felt far fewer withdrawal symptoms than I had expected, probably the worst of which were lethargy and insomnia which dragged out for some months (most of a year I would guess).

    I subsequently stopped using Fentanyl every day, opting instead to use it only when the pain was unbearable, which luckily was a decreasing occurence. I still get a prescription but very rarely need to use it, and will probably cancel the script very soon.

    Obviously part of this is simply that my pancreatitis has ceased to be a major problem, at least for now, but as a result of my experience I wonder now if a prior history of opiate addiction had in fact made withdrawal from Fentanyl easier in some way? Perhaps that my body was familiar with the whole process of withdrawal?

    I am absolutely certain that the same thing would not happen were I to become re-addicted to either Heroin or Methadone (heaven forbid, and there is zero chance of that). Occasional short term use of Oral Morphine for pain has not proved problematic either. I am certain of one thing - many doctors have only a very basic knowledge of the realities of opiate addiciton and withdrawal, and seem often to be no better informed about them than the average reader of sensationalist newspapers.

    This is in no way meant to diminish the clearly devastating effects that Fentanyl has on others, whose stories here are always of interest, and who deserve our support. Well done for coming off after 18 years - I wonder if you are now on an aternative drug, or somehow pain free?

    Good luck, and stay clean!

    Tim

    • Posted

      Hi Tim,

      Congratulations for making changes for a healthier you.  My biggest problem with Fentanyl is that I was always strarting to go through withdrawal on the patch after 24 hours.  At first the patch was replaced every 3 days and then it was changed to every 2 days because it didn't last.  I will say that while it worked, it was great for me.  But the more time I was on the drug, it seemed the dosage did not last and to increase the dosage just meant a harder fall on day 2.  So for this reason I had lower my dose from 100 to 50mcg every 2 days.  At least the down effect was not as dramatic.

      When I became injured in October I thought it was a good time to get off the fent all together.  It had been so long I was not sure what my pain level would be from the back injury in 1996 but assumed it may have made some progress in recovery over the years as this is what I was told with nerve damage.

      So while I was out on disability for 8 weeks and on percocet and vicoprofen, I thought the perfect time to get off the fent while I had other meds and time to detox.  While 3 months ago I was on about 4 percocet and 6 vicoprofin a day, I am now down to 3 vicoprofen only.  If I didn't have to work and sit all day, I think I could get that done to nothing except for flare ups.

      Here is something for thought.  When I called a hotline for drug abuse and explained what was going on, they told me to go to the emergency room and that I would be put on methodone to get off the fent and then possibly percocet and then weaned off. 

      In my research of Fent, it was stated that this drug is hundreds of times worse then herion.  I'm sure this depends on the dose.  I can't say I ever had any "high" from fent and therefore I never felt a drive for more.  I just wanted pain free days where I could function normally.  I would have been happy to go the rest of my life on fent. if it worked for 48 hours and then I would replace but it just didn't.  The more often I replaced the patch, the sooner it seems to stop working.  I often wonder if this was just my brain sending weird signals.

      So now I am back to dealing with the back pain that put me on fent.   I still have my vicoprofen while I started an exercize program to help strengthen my body and back.  I will say that during the worse times when I thought I wanted to die, this forum gave me hope.  I knew that I would not feel that way forever and it does get better. 

      I'm so happy to hear you are clean and hope you never slip back down that dark spiraling rabbit hole.  Congrats for taking control

  • Posted

    I have been on them for 25 years the highest dose in fact they don't work as well now and I have to top them up with oramorph. I am scared to come off them due to withdrawal.

  • Posted

    Wondering if I made a huge mistake. I have experience with quite a few opiates and benzos for a severe excruitiating pelvic, abdominal, low back and hip pain. My body began shutting down because the pain was just that bad... I thought it was from a failed full metal on metal disc replacement that I had done in 2001. It was the blind study and My Doctor just happened to be in charge of this operation. This was before you heard about the metal on metal hips probably that had everyone suing because of pain. Anyway I was taking Gabapentin at 3600 mg and realized my health problems worsened every time I got an increase. I mean you can't balance your electrolytes your not doing good. Adrenal glands were shot after just 6 months of that dose. Soooo much pain! Chronic pnuemonia and infections it was so scary.   Anyway I started cutting back on gabapentin and the pain is slowly getting better and I can actually think not in brain fog!! So I'm lowering and pain pump had been scheduled and I went ahead and had surgery. I'm allergic to morphin all types so Dr put Fentanyl in and then today We almost doubled the dose. So straight to spine. Plus He said to double My duloxetine to 60 mg too. I also have my Opana ER once a day at 20 mg plus oxycodone 30 mg 4x daily. The gabapentin is at 1200 mg probable dropped too fast! No more oxicarbizapine 1200 mg too. So the CNS meds were making Me sick. Oh plus klonodine 1 mg per day. To help with heart racing. Gabapentin withdrawal. Pain is so much better that I'm worried now about constant influx of Fentanyl that's out of My control. What should I do? Anyone have idea. Just started Fentanyl so I wonder if I should just pull the plug on it because I don't need anymore of what I had. One website claims within 6 months the stomach issues will be very bad! Nooo not again!! I think after what the gab did to Me I could take the damned back pain!  First isn't duloxetine and Fentanyl a major bad combo and Fent sounds like a life destroyer and I'm sure I couldn't go through this again. I was given chance to live and it's a precious gift. I'm starting to wonder if My Doctor for pain and GP are just that clueless or He is trying to kill me off!  I know I have PTSD but now I guess I'm paranoid?! Any suggestion?! 

  • Posted

    Hi!

    I have been on the Fentenyl Patches for almost 15 years. I wear 3 100 mcg patches and change every 48 hours.

    I also take dilaudid and hydromorohone (once i started medicinal marijuana I was able to cut the Dilaudid and Hydro by 1/3). The patches work for me, however I am afraid to ever go off.

    I just found this forum.

  • Posted

    I was on the Fentanyl patch for over 12 years. Personally, it was a wonder drug for me with my lower back pain (had 2 surgeries that only made my back worse in my early 20's). After I was on it for a couple of months and found the proper dosage, I felt just as sober on the patch as I even did off. There was no buzz or drowsiness. The only side effect was constipation, which is one of the most common side effects from taking any opioids. I did have to switch to every 2 days instead of every 3 as the patch just didn't last through the 3rd day, which according to Johnson and Johnson, isn't that rare. I was told by one of the CS reps there that roughly 15-20% of people on the patch for more than a year wind up switching to every 2 days instead of every 3. 

    Anyways, I did not come of Fentanyl by choice. I am one of the casualties of the current war on opioids that is raging, which IMO is so misguided and so full of propaganda its mind blowing. Of the 64,000 overdose deaths, (number of overdoses per year due to opioids is one of the most potent attacks against them) that occurred last year, 95% of them were from people using illicit drugs like Heroin. And most of the remaining 5% come from people mixing drugs like Alcohol, Benzodiazepines, etc. Legitimate pain patients who go to pain doctors and follow their pain contracts to the letter, like I have done, are NOT the problem and never have been. Yes, there is no denying that changes needed to be made as doctors went to far in the treating pain direction and the rate of addiction is higher than the drug companies first stated regarding pain patients. The real figure is up to 25% that can become addicted, which means there should be some sort of screening in long term opioid use that can pick these individuals out and get them off and the help that they need. The other 75% do just fine. I was on the same dose for the last 10 years and it still worked amazingly well, but my doctor decided to stop writing pain scripts altogether due to the crackdown on opioid prescriptions so I was forced to come off of them.

    I am currently roughly 10 weeks off and there has been absolutely zero physiological cravings, just HORRID withdrawal symptoms. My doctor put me on a 20 day tapering schedule, which is nothing short of cruel given how long I was on them. Everywhere I have read, a proper tapering schedule should be around 10% every week or 2 for people that have been on potent opioids long term. He cut me down by 50% for the first 10 days, then cut me down 66% the next 10 days and that was it. Anyone who has never been through withdrawal from a major drug like this just has no idea the level of misery that they can cause. Honestly, I would rather pass kidney stones every day than have to sit through the constant state of misery that withdrawal from powerful opioids causes. It unrelenting, just non stop misery. I am still extremely weak (MAJOR understatement) and have just started to get up and start doing small bursts of exercising, even if its just walking up and down the stairs 25 times. I have never felt so weak in my life. Just have to keep fighting through. As crappy as I am still feeling, the major withdrawals have subsided. 

    I honestly feel sorry for anyone that is having to go through this, especially if it you were a legitimate pain patient following the rules. The only people that will get pain meds at this point is cancer patients and unfortunately I think it will take al least a decade or 2 before the pendulum swings back the other way and finds a better middle ground. Unfortunately, that means that there will be a lot of people suffering in pain in the years to come. Again, there is no denying that changes needed to be made, but they have just gone WAY too far in the other direction now. Again, if you don't have cancer, its going to be very HARD to find a doctor who will write you long term pain meds. Just a very sad state for legitimate pain patients in the US. 

     

  • Posted

    I'm surprised to hear so many people have had problems. I've been on Fentanyl 25mcg for around three years now, as far as I can remember - memory was never my strong point - but I was previously on Butrans. I still have a couple of Butrans patches of 5, 10 and 20 mcg from 2015 so I'm assuming I started at 5 and finished at 20 mcg. I only asked the doc for an alternative because I got a bad rash from the Butrans, more from the adhesive than the actual patch.

    I've never really had any problems with the Fentanyl, and it's the only thing I have had that has relieved the lower back pain I've had for the past 20+ years. Apart from tiredness they have worked generally pretty well for me. I've had a more recent issue with Chronic Fatigue which may be related or may be another issue, but a Mindfullness course and pacing has helped a lot with that.

    Before I started with either of these opioids I could barely walk 200 yards without needing to rest at times, and work - which mainly involves working from my computer at home - was difficult. It still is sometimes, but prior to being described the patches my little business was practically dead in the water, because I could barely work, so they have been well worth it for me.

    I have noted from reading some of the threads on this forum that most people seem to be on a much higher dose than 25 mcg which is no doubt a factor in withdrawal.  I'm only here now to research withdrawal issues as I have felt like crap for the past couple of weeks, having reduced from 25 to currently around 15 mcg. It hasn't really been much of an issue until recently.

    I've cut down by approx. 3 mcg a week by simply cutting the backing strip and leaving part of it on. It's hard to be precise as those of you using the film patches will know, the corners are rounded and the two halves of the backing strip are cut in a wavy line. But instead of removing the whole backing strip I cut off roughly a quarter, then a half, and currently three quarters of one of the strips, hence I'm currently on around 15 mcg. I'm only mentioning this as I've noted a lot of people asking if you can cut the patches. Why? Just cut the backing strip. Job done. Cutting off a quarter of one of the two backing strips equals around 3 mcg.

    As others have said they often last less than the three days they're supposed to last. That said I've had days where I haven't replaced the patches for up to 4 days with no pain or withdrawal symptoms. On average they seem to last around 60-66 hours and the first signs are the nerve pains.

    Anyway, I've been OK cutting down until recently with no real severe symptoms. Initially I got the "zaps", which again were the same as I would experience when the patch had run out, though not as strong. This is what I called the nerve pain as it felt like my nerves were "jangling", especially my hands and legs.

    But I haven't had the zaps since dropping below around 18 mcg. Just the headaches, and feeling really worn out and crappy. To be honest I'm not even sure if it's down to the patches. I was fine up until two weeks ago then I had a migraine for three days but I often suffer with migraines. Then 5 days ago I had a takeaway and had really bad diarrhoea for a day, stomach pains for 2-3 days but easing all the time, and another migraine, though this one is more of the naggy headache time and although persistent is also gradually easing. So as it stands I'm not sure if it's due to Fentanyl withdrawal or if I got a bout of food poisoning or something but if it's the latter I've never been this ill with food poisoning.

    To be honest these are the only thing that has worked with the pain and it's only because I'm under pressure from the docs that I'm cutting down at all, and I think that's more due to the cost than the fact that they're concerned about whether they work for me or not. In the UK we pay a set fee of (the equivalent of around) $11-£12 per prescription item, with the option of buying an annual pass which costs around $150 a year regardless of how many prescriptions you need.

    However, I believe each pack of 5 patches costs the Health Service around $120 so it wouldn't be a surprise if they wanted to wean me off them for cost reasons. They already changed me from Duragesic to Matrifen. I felt that Duragesic worked better but I know they are more expensive. My main concern is that EVERYTHING else I've tried for the pain, over a 20 year period remember, hasn't worked and of course I don't want to and can't afford to go back to the state I was in pre-opioid patches. I'm 58 now and it's hard enough as you get older and less mobile. 

    So, sorry guys, no real answers from me. I'm still don't know what I'm going to get to replace them or if I can cope with less than I'm currently on - the back pains are increasing as I reduce the amount of Fentanyl - and I'm also concerned about being able to get them again if nothing else works. I've cut down from 25 to around 15 over a course of six weeks or so but not really through personal choice. I've had no real problems while on them and apart from the past few days, no major problems when cutting down. At the end of the day I just want pain relief and Fentanyl did that for me. I didn't feel the "euphoria" reported or anything that was particularly bad, and they did work to a point.

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