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weaning from the Fentanyl Patch

Good morning all,

I am new to this forum and am currently almost 5 weeks out from a three level lower back surgery, laminectomy and 2 microdisectomy...prior to surgery I went through a year of other treatments, various medications, PT, and epidural shots and was finally referred to surgery.  The first two weeks were complete and utter hell with the pain as I was on the max dose of hydrocodone 10/325 12 tabs daily and ultram 6 tabs daily...since surgery and things are getting better, I can actually feel my right leg for the first time in a year, I have gone to my ortho doc and pain mgt doc to begin AGGRESSIVE weaning of my pain medication...this was the reason I had surgery to begin with was to get my life back and get off medication.  I tried to wean myself from the pills and was unable to do that because my brain would tell me to take 2 pills instead of 1 out of total fear that the pain would return, I tried this method for two weeks, so when I went back I demanded to be switched to the patch from 20mg of oxycontin and 30mg of oxycodone every 4 hours....I wanted to wean from the patch because you can't manipulate that....so I am currently on 75mcg of fentanyl every 3 days, a 0.2mg clonidine patch, and 10mg of valium up to 4x daily...I also have 5/500 hydrocodone for breakthrough pain just in case, but my husband has strict control of this medication and will only give it to me if absolutely necessary.  My question to ya'll is what to expect.  I will be weaning to 50mg patch on tuesday, still have the clonidine and valium and I take ambien for sleep...so far things have gone well, was recently on steroids for spinal inflammation which made me very sweaty, but my pain has not been above a 2-3 since starting on the patch (unheard of prior) and I have experience little to no withdrawals despite starting at 75% of my total dose of pain medication when I switched...I plan to wean every 6 days down by 25 mcg, or do you think it would be better to wean by 12.5mcg every 6 days...I have a small child and a job that I love and I don't want to be on these medications anymore, they make me crazy....I am not released to exercise except water walk/jog until July, so I spend a lot of time just thinking about what is going to happen and how I will feel....anyone have any experience they can share..thanks in advance...K
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Avatar universal
Hi " katiebug5528.

After reading your post, I found myself very interesting in how are you doing today since it's  old thread. I just wanna make long story short. I was placed on most of the medications just like you after having surgery of my low back disc L4- L5. I was on Morphine (before  surgery), Then after surgery  I was on ,Oxycodone, Oxycontin,Gabapentin, Lyrica, and finally Fentanyl patch. The Fentanyl start was 25mcg every 3 days. Later my PM doctor increased dose on 50 then 75 with Oxycontin. I have never been painkiller user in my life , so i put myself in trouble because I didn't pay attention of how dangerous all of those mentioned medications can be. Today I am very experienced with all of them but I am also trying to get rid of them after almost 6 years of using Fentanyl. Right now I am on Fentanyl patch 12mcg and Oxycodone 10 (pink) . I told my PM doctor that I just wanna be clean and that I wanna be free. I really don't care in how much pain I can have after tapering off but I don't wont them in my system anymore. So, my question to you is have you been able to wean off of Fentanyl and other medications. Since I have been trying to taper off myself several times with no success now I am going to do this to the very end. I just wanna know ,because, trust me Fentanyl WD drives me crazy.Can you please respond and give me some courage to go to the end. This time I am having a lot of weird feeling  when Fentanyl expiring and I have to use Oxycodone 10 to help me easy on  withdrawals. Thanks a lot in advance for your valuable time in reading this message.    
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Avatar universal
Hi, my name is Amy im currently almost 38. I injured my lower back 5 weeks after my 30th b-day which stinks. It will be 8 years since my injury date and 7 since my first lower back surgery. had had L4-L5 DISC REPLACEMENT .I was part of the research for the fda for the pro disc which is what I have. I have to tell you ,Im in more pain then every and I have a very high tolerance when it comes to dealing with pain. Just to give an example, I worked in construction all areas but at this one job i was in the union at mohegan sun casino and i was using the 90lbs jack hammer and there was a railing rite next to me ,metal railing and lucky me ,lol they couldnt remove the railing because it was iron workers job and they took the holiday weekend off so i had to do the job with them in my way well long story short in a split second my finger got jacked lol between the railing and the jack hammer no lie my finger exploded like a volcano of meat pouring out. i went and got the meat torn out without any pain meds because of the pressure nothing worked and the doctor had to restitch it twice i almost killed him. i went back to work for another 16hrs with no meds. so i can deal with pain but, I have to say nothing has prepared me for what i am still going through. As far as what I am on, first my body is messed up and i say this because in order for me to have say 70 to 80% relief from pain the amount of meds id have to be on makes me sick and i wont take certain stuff and thats for a big reason. Any pills, and I mean any over a period of time does tear up you liver and stomach lining not to mention oxycotan that is presciption heroin . doctors will give you just about whatever you want and thats scary to me. Ive tried several sleeping meds. because like all of you i havent slept for more then 2hrs straight for 8 years sometimes im up all night and day it ***** big time but, to be very honest my relationship with god has saved me and has blessed me with the ability to see the good in this living hell im living every day. I am on 75mcg fentanyl patch i change every 48hrs because it loses its strength. I take prescription benadryl  andit helps fall asleep for a couple of hours but you can take it again most sleep aide are anti-depressants and cause weight gain and i was tierd of feeling like a guinea pig. I am back on percs. 15 i take them mostly at night because my back hurts so much more at the end of my day. I have taken myself of the patchs before and it took about 2 months for my body to feel somewhat normal. i did it cold turkey which is the best way . its over in 2-3 days. I will say this your on a lot of pain meds mary and your lucky you can work, I couldnt even finish college because my back just locks up when im in any positions for 20-30 mins and i was chewing percs like m&m's not good. Im a very goal driven person and ive always worked a lot and hard being a women in a mans world isnt easy even if your a tough skinned person it can wear you down and im a girly girl out of work heels ,makeup, tiny blonde so that just made it harder for me.my boss even refused to put me on a job once because he said women had no place in the rigging dept. so i became a boss in 1yr exactly and walked bye those jerks with a big fat smile on my face. just to give you an idea i was only 27 and you need a engineering degree or 10 yrs in the yard and had no college at the time and 10 mths in the yard but i passed all the tests and gave them all the rite answers. i def. worked harder as a boss in 0ne more year i had my own over haul and repair program at the sub-base building subs and thats how i tore my disc actually i tore the disc above my L 4-L 5 too but at the time the two level replacement wasnt available and that was a blessing. I have 2 girls know they are 13 and 20 im divorced but it wasnt because of all of this ,we divorced 3 years into my job at the base. but its hard because I can never have another baby and so many men my age want kids of there own and my oldest is married so its just me and my youngest and shes so sweet. Im blessed to have her .I cant believe im sharing all this. It feels good because Im always the strong one for everyone and no one understands what we are going through unless they have gone through it and its hard when people look at me and say you look like nothings wrong with you and even my family has talked behind my back ,they dont realize that i have bad days ,sometimes bad weeks where i was in so much pain i couldnt move but i never let people see me like that. I put a smile on my face and grin and bayer it.I pray this fiber silicone shot gets approved it heals tears in your disc its like a miracle . if you guys dont know about it google it. If i get another disc replaced it will continue that way for the rest of my life and ill never be able to put on my 7" heels and go dancing all night again, and when your 5'5" you need every inch lol. the good news is this site is here for us to be encouraging and also for us to share information that could help someone and i hope i can . I have contacted the doctor in germany who created the pro disc and sent him all my medical records so im not gonna stop searching for answers untill im healed or off all meds and at a manageable pain level.mary i wish you the best abd i hope you update us on how your doing.have a blessed night everyone-amy
Helpful - 0
1326416 tn?1370927001
I always try to stay on the lowest dose of pain medicine possible-regardless of what type of painkillers I happen to be on at the time. The lower the dosage your on, the better your pain control will be post surgery (if surgery is ever necessary). On the "flip side", the lower the dosage the easier it's going to be to wean yourself off of opiates if and when the time comes. It's just a good policy no matter how you slice it!    Also: If your on the lowest dose that your comfortable with, chances are your dose can be increased if your pain increases for some reason.
               shinty
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1855076 tn?1337115303
I agree with Mollyrae on lots of this.  I would never consider Fentanyl again unless I knew I was going to never come off it.  My biggest fear was what happened to Mollyrae and that I'd have a surgery and they could never control the pain.  I agree also that there comes a point that the opiates start contributing to the pain.  Coming of Fentanyl can be a challenge but it's worth it.  I personally feel like Fentanyl wreaked havoc with my body.  Some of the trouble I'm still dealing with.  Even if you know you'll need meds having a medication holiday or getting your dose lower from time to time is worth it.
Helpful - 0
535089 tn?1400673519
Hi Katiebug,

I have had a lot of experience with Fentanyl and like others have said, it is one of the worst opiates to wean off of. Fentanyl has a very long half life and stays in your system for a good 72hrs. before the withdrawls really kick in.

At one point, I was on 150mcg fent every 48hrs. and 4 15mg Oxycodone per day. I continued this regiment for 3 years until the last cervical surgery in 2011. After the surgery was complete and I awoke, I was in the worst pain I had ever been in because my tolerance was so high from the Fentanyl that nothing they were giving me was working. The Surgeon had to admit my to the ICU so that they could control my pain with a powerful drug called Ketamine along with a Dilauded drip. I was there for 4 days until I was stable enough to withstand the pain.

the Surgeon called my Doctor and had a serious pow wow with him regarding my tolerance. 6 weeks later as I sat in my Doctors office, it was decided that I needed to come off of the Fentanyl asap. If I were to need another surgery I would have been in the same predicament.

It took me 4 months to wean down to a 25mcg every 48hrs. and another 2 months to completely stop using the patch.

The w/d's really didn't start until I was in my 3rd day of weaning down each time, so I went through that horrible flu like feeling every time I would lower my dose. It was pure H**L.

You mentioned that you thought that the sweats you had were from the Steroid Injections. In my opinion, they are from the Fentanyl. I too had the sweats and they didn't start until I was into my 5-6 month of using the patch and even then the sweats would come and go until I was into the patch for a good year, the sweats came every time I exerted myself, did any housework or slept. It wouldn't take much to make me breakout into a full blow sweat and then it did, it was hard to stop them. I don't know, you know your body and Steroids can do that to some degree but I would really consider the patch causing you to sweat.  

Fentanyl in my opinion is one of the worst opiates out there. Because of my experience with it, I can now see it used for Cancer patients but that's about all. The w/d's from the Fent are some of the worst known to exsist.

I hope that you can wean off of the opiates. I did and I can begin to tell you just how much added pain they were causing me. Of course I didn't realize it at the time but do now. I have half the pain I used to have and I can manage it even after 6 back surgeries...yes, I can be considered bionic woman with the amount of metal in my back.

I hope this story helps you. I wish someone would have woke me up about the patch and had the insight I do now.

My best,
Mollyrae
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Avatar universal
hi mary-----i so agree with you about methadone!
Everybody---and yeah i know individual diffs etc....---ok--well---most everybody please do not start with this drug! It will be hell to get off when you want to stop meds for a while. Or change meds......not a good choice for me and maybe not for you unless you really have no other option. And if you are taking it---then take it with a positive mind-set....be-friend it! Why torture yourself about it if you have to take it.......
I will keep you posted mary and thanks again----it really helps.

om
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1855076 tn?1337115303
I am not sure I'll ever be pain free or drug free.  I am probably always going to need pain meds if I'm realistic.  I just want to make sure things don't escalate like they did before.  In hindsight, I should have been more firm with my original pain team and insisted they bring me down slowly and reevaluate things.  The big wakeup for me was when they wanted me to go on methadone.  I did somee research and knew it would be a bad choic for me.  I know it's worked for a lot of people but for my own mental and emotional comfort, I know I need to be able to come off meds if I need to.  Methadone can be very hard to come off.  They weren't listenimg and that's when I realized I needed to find a different  doctor.  Keep us posted on your journey with this.
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Avatar universal
thanks for answering about enquiring minds mary----
and thank you both for sharing what you did that helped.
I have also heard that baclofen can help. Who knows what will be of help we are all so different.
I am going to go really slow.....no hurry. And all i want to do is recharge or recalibrate or re-whatever it is that helps with the tolerance. I will very likely need to be on opiates the rest of my life and i want to learn all the tricks i can to live with---and not against----the medication.
Thanks so much for your help.

omhome
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1855076 tn?1337115303
I probably would have done fine if I tapered under a doctor's supervision.  I was flying blind and maybe at that time in a bit of denial.  I was letting my sister, who has no expeerience or understanding of chronic pain, narcotics or the difference between addiction and dependence, influence me.  I believed I was just being weak and if I was only strong enough and had enough will power I could do it on my own.  I was very foolish.  I have other medical conditions that made it unwise to CT or taper as fast as I did.
Helpful - 0
596605 tn?1369946627
I did not follow anything special. I weaned slowly and it was not hard at all.  

I am a chronic pain patient and will probably need medication or treatment for many years to come. I did it to help my own pain and to make it so that the meds would become effective again. My doc and I wanted to also make sure that I was not experiencing rebound pain too.

I always knew, in the back of my mind, that if it became too difficult that the wean could be slowed down more, stopped or that I could go into rehab if I needed more help. I just never needed to do those other things for whatever reason.

I only struggled a bit at the very end. So, took a few Niquel days and slept thru the days when it was hard.

Horselip
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1855076 tn?1337115303
Enquiring minds want to know was the ad for the tabloid The National enquirer :-)   I found Alteril, which is all natural, great for helping with sleep.  It has melatonin, Valerian root and passion flower along with some other things.  Valerian root alone is great for anxiety.  I've actually found it better than ativan or klonopin and it causes no dependence or addiction.    Lots of people like Restful Legs by Hyland.  I needed a prescription for potassium at one point.  Magnesium supplements help.  I had terrible nausea and vomiting and for me lemon Italian ice helped.  Tons of fluids.  I tapered off too many meds at dosages too high and I wanted off so badly I went too fast.  My original pain management team got a bit lost along the way.  I believe they really were trying to help but I was having so many procedures and surgeries so close together.  They kept changing meds, upping doses, adding more meds and I'm sensitive to meds.  So I think it was all together a huge assault on my body.  Fentanyl affected me badly.  The doctor I have now isn't like that.  He knows I want to stay at as low a dose as possible.  I'm not on much now and my pain, fifty percent of the time, is very manageable.  The rest of the time is hit or miss.  It was someone, who was a nurse, on the substance abuse forum that gave me great direction.  I had lost all faith in my pain team.  Imodium was also a huge help with withdrawal symptoms.  You have to take more than the regular dose but it helps with a lot of the bad symptoms, the tummy issues, sweating and chills.  I also was on Clonidine for nerve pain.  Some people get  a script from their doctor because it helps with a lot of withdrawal symptoms.  I can't say if it did anything for me since I was on it for so long for the nerve pain.
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Avatar universal
what else helped you during the tapering from the opiates marycarmel?
I would love to know and yes i know about thomas recipe etc......but what was it that worked for you during the months (i am guessing months?) you were doing it......? An enquiring public would like to know. (i can't remember where is that from? an enquiring mind...? something something...something...it relates to something? What?) You know i keep getting these memories of old sayings quotes lyrics dialog etc. passing thru my mind and some i recognize and some are fragments i don't. Like the enquiring thing---hey---at least the memory is working!
   Ok horselip---ya done good! Thanks......om
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1855076 tn?1337115303
I actually found the same.  After I came off boatloads of meds, I had to go back on meds because the pain was causing my blood pressure to spiral out of control.  I'm on 20 mg oxycontin twice a day.  My Bp has come back to normal (with 2 BP meds)  Now with the pain getting better, getting back to the gym and getting back in shape.
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Avatar universal
hey thanks horselip---your info helps me for sure. I like hearing a positive story about the opiate challenge. What else helped you while you were lowering your dosage?
om
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596605 tn?1369946627
Hey, good luck! I weaned off of OxyContin 80 mg three times a day AND dilaudid 16 mg a day.

I first weaned off of the dilaudid, Where each minth my dose was decreased. So I went from 16 to 8 to 4 to 2 over four months.

Once I was off of dilaudid, I began the OxyContin wean. gain each month my dose was decreased. i went from 80 to 60 to 50 to 40 to 30 to 20 to 10 to 10 twice a day then off.

I really did not have many probs with the wean. My pain increased a bit at each decrease for a few days.

The hardest part was going off of the 10 mg dose for me and I think that this was more psychological. so I did add in more physical activity at this point to try and get the endorphins going more.

I know that oxycontin is not as long acting as the fentanyl patch but it is a "longer" acting med and I did have a physical dependence and had built so much tolerance that it was not helping any more even at those very doses.

My two cents woulda be to go slow, slow, slow.

I did my wean to reset my tolerance and I am am taking OxyContin again now, but I am getting more relief from 20 mg twice a day now than I ever got from the very high doses when my tolerance was so high.

I hope that this helps and good luck.
horselip

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1855076 tn?1337115303
I agree with MadMan.  Not sure of the thinking of going on Fentanyl to come off lesser narcotics.  In any event, the slower the better.  Fentanyl is very strong.  Coming off so many is difficult.  I tapered too fast off Fentanyl and also at the same time was coming off a boatload of other stuff, narcotics, ativan, anbien ... and more.  Omhome is right .... try to not overworry what might happen.  Everyone  is different and some people feel no withdrawals. If you do, talk with your doctor and they can adjust things.  You can also check out the substanve abuse forum and look into the Thomas recipe.  The supplements will help.  Even if you're just dependent versus addicted, some of the tips shared on that forum benefit anyone coming off meds.  Hope you'll keep posting and let us know how things are going.
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Avatar universal
yep----madman is right.  One at a time!  Positive mind-set and when it turns negative notice. Then switch channels to Positive. Just change it! On purpose. Over-ride it with positive. Fill the damned glass.

om
Helpful - 0
3112530 tn?1434032033
I am just concerned about the amount of drugs she is taking. Yes, the mind can control the withdrawal symptoms and YES it can be done but one medication at a time depending on the medication and how long she has been taking it.
I know for me, it took about two months to feel full recovery but it takes a strong mind and fear (FOR ME) to get off these drugs.
The glass is ALWAYS half full unless you drink what is in it and then you have nothing to compare it to. Don't drink it and see the reality that there are two sides to every story and a person is multifaceted. Doctors are even more complicated. I will stick to half the glass and teach the doctors what they need to know after I learn enough. That is the fun part. Doctors will always be right no matter what the condition. Patients become the tool???
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Avatar universal
hi katie: dwell on the positive and quit the constant thinking and worrying over what might happen. If you keep reading and asking what to expect---what kind of hell you may go thru----then what people tell you will be what you will create or amplify----a kind of placebo effect of negative rather than positive results of that subconscious programming.
    We hear mostly "war" stories on these forums.  The research and all the data support a positive outcome for the majority of people who wean slowly (operative word is Slowly) from these drugs. With little and some cases no wds. Have dr. and husband help and you should be just fine hon. You just went to fast before. And yes it can be hard but do not make it harder by inputting any more "war stories". Input positive--and the output (and your experience) is positive.  Input neg and the experience will be........
   The old song is true----accentuate the positive---eliminate the negative. Can't miss.

omhome
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1326416 tn?1370927001
I think it's going to be harder to wean off of fentanyl than the oxycontin/oxycodone that you were on before. whatever happens, just make sure your doctor knows what's going on, as he/she can help you with withdrawals much better than you ever could on your own. good luck.
           shinty
Helpful - 0
3112530 tn?1434032033
Wow, you have described A LOT OF MEDICATIONS that need supervision. Trying to cut down may do damage with all that you are taking. Get assistance from your doctor in the use of these medications. Fentanyl is a very powerful medication that requires doctors to understand how powerful this drug is. When you mix this with other medications, the effect is intensified die to the amount of fentanyl in your system already along with the other drugs.
When I went cold turkey of the fentanyl,(50mcg) I advised my doctor. He gave me medication for anxiety but NOT until I needed it. One month after I stopped the fentanyl, I stopped the morphine and other opioid medication. I was then put on medication for anxiety but ONLY AS NEEDED.
Yes, this was hell to go through but it takes a strong constitution and fentanyl is one of the worse, in my experience.
Increase your vitamin regime. Drink plenty of water to flush out your system. Detoxing from these drugs will take a while so be patient. Focus on the idea that you need to get off these medication BECAUSE pain issues can increase on some of these medications. The body is a strange thing when it comes to drugs. You have to re-energize your body with the correct tools such as vitamins and the like. Remember, you have taken these drugs for a reason and your body has absorbed enough of them to react to what you are currently taking. Changing this pattern will take time and your body and mind need to re-adjust.
Please get medical assistance to understand how powerful these drugs are and stopping them, cutting down or replacing them with another drug, can and will cause problems. Don't do this alone, get a support team.
You need to create an exercise program to start those endorphins working. The endorphins create a program whereby they replace what your body has become accustomed to. A light exercise program is great for starters but read up on endorphins and what they do. Ask others what they have done. Read up on how powerful these drugs are and what they do to the mind and body.
My body reacted to these drugs by creating pancreatic problems. Please do some research to understand what direction to go. Understand your mind is being controlled by the drugs and your thinking may not be clear. You may not realize this until your system is cleaned out and your brain function will eventually return.
Get medical advise, a support team and read up on 'how to detox'. This is very important and don't do it alone, no matter how strong you are!
Wishing you the best in your recovery.
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