HELP :::: i want off the FENTANYL PATCH -

[iwantoff]

i have been on the fentanyl patch for 4mths now because of chronic pain. i started at 12.5 then within a month i was up'd to 37.5
i still have chronic pain and a lot a breakthru pain for which i take tylenol 3 and clonazepam (for spasms).

i want to stop the patch because it does not work for me .... can i stop cold turkey ... so far i have got myself down to 25 and am prepared to drop to 12.5 but what process would i follow .. how many 12 patches would i apply before stopping completely.

i need help and advice ... has anyone gone thru something similar

[john3827]

I sincerely want to thank each and every person who took the time to write about your experiences and words of encouragement. I developed a blood disorder, clotting, for reasons unknown. But each and every surgery, no matter how minor, is a life threatening ordeal because of the blood clotting afterwards, even though I come off the clotting medication temporarily and transfer from coumadin to lovenox. The clotting still occurs and gets worsee with each and every surgery, often life threatening results such as a saddle emboli (the worst case scenario of a pulmonary embolism. Both legs became 100% acceded with no blood flow reaching the feet, The result was perephial nueropothy. This condition, with any pain control, feels like you are walking on razor blades. I have other pain issues but the worst are the nerve damage to the feet. Currently, three years later I take (5) oxycodone at 10/325 mgs and started with 25 micrograms then increased to 50 micrograms of fentanyl. I have episodes of confusion and I crash in that every few months I have to retreat to the bed and sleep for hours on end. It just happens and can't be avoided. I fight the sensations but I go into "John's world" none-the-less. I often think of trying to get off these meds but they do keep me pain free. I've realized though that I am chemically dependent and want to somehow deal with the pain...somehow, in lieu of a lifetime of controlled substances People seem to think that I'm getting high or wasted with this regiment of meds but I am not. I don't know how but I'm going to try to reduce, slowly, me intake on meds. Even with the fetanyl and the oxycodone I take clonazepam for the bouts of twitching and kicking. Without the clonazepam it's kicking/twitching city. Pain Management, if I address these issues, will only increase the meds. I plan to re-read all that you people were so kind to take the time and write of your experiences. Your sharing has lit my fuse and I intend on heading in that direction...of being less dependent. At least if for anything if I can reduce my intake that will be a success or the beginning of a successful attempt to be less dependent with hopes of being totally non dependent. If successful I know that it'll be a very long and arduous process. It would be great not having to deal with the current side effects and the savings too will be another plus. Again, that you everyone for your input. I've book marked this page and will return to it often. I will pray for each and everyone one of you but my initial search on the net yielded exactly what I was seeking. Thank you. Not sure Pain Management was originally the way to go but too late now. We are a community of people who share this unique problem in common. I'm glad there's others here to lend support, knowledge and experiences with others seeking information.

[Whatdidusay]

I wantoff

Can u please tell me where u are at this stage 3 years after your post, I'm on75mcg myself and was on 50 but we cut back on orals and upped patch.pain is beetr but side effect are worse, the sweats and nerves and memory for,sure, whn I started a I sweat non stop for months not all bad I lost 60 lns which was a Major plus,anyhow   I use Mylan and we I have to go p and down I don't cut the, although I've been told its ok to use that brand and cut them, I just leave they plastic on the bck and adjust as needed to go up or down and helps control the flu stuff and  the rest, like if I'm driving the next day or out in the yard I cut back for my own safety as I had  75 on and mowed the yard and Burke out in blistering wells the minute I came out if the shower and 3 months later they are still there even after steroid shots so is lok like hell,but I cut back so I could   Get around whenj i needed to ,I backed my truck into a wall oce while way up ,and I knocked the side air conditioner off my camper another time ,so I figured out  don't drive way up on the patch itmeffectmyour ability to react,even though our not buzzed ,I'm not an abuser or a user I take what I absolutely needed, I turned down ooxycodone right off the bat , that's a new kind of hello I didn't need either ,I'd probably be dead if I had done that, I have to write a toe  and put on the fridge just to,change the patch as is and I stick noted in my iPad and mail them to myself, beings I barely kept with anything like what day is it and month on occasions ,well I hope you did what you needed but I'm untested to know how u safely handed going to new meds,and what u are taking that helps with pain without making your liver and kidney fall out,

signed
Whatdidusay

[rfreed]

Kicking the meds is somthing I am suffering to do as well, And hearing that there are those that have are a big help in knowing it can be done and keeping the pain at bay, So I have a doctors appointment tommrrow and I am going to ask that thye start me off of them.lets see wht happens. bad bike wreck,5 months 100 every 2 days, down 75 every 2 days, my surgon wants me on morphine 60 2x day, 4-15mg oxcoden everyday.Pain is rough there has to be another way in dealing with it.
Any Help

[dave4170]

this has really been good reading but i really am stunned when you say you are not addicted nor dependent if so why not just stop?

[hopeful1272]

I need advice. My husband is about to start detox from Fentanyl patches. he is on his last one and will be quitting cold turkey. any advice? Rehab is not an option as we cannot afford it or for him to miss any work.

[iwantoff]

yes i am still off the patch .. i am in unreal pain and truly beside myself 99% of the time. i am still attending a pain mgmt clinic and they are teaching me breathing exercises and other physical therapy type that are specific to my injury and pain.
tonight i cut the grass, just the backyard and boy i will pay for that till the next time it is due. stress and anxiety add to the mix and make things worse. if you are planning to go off, and since you are on such a high dosage, do with help from your doctor and visit this web site for support. i was not on the patch that long, but long enough to know it would be a challenge to go off. do i miss it ... in hindsight i have to say yes. as much as i thought it was not working, i know now it was doing something but truly not enough that is why i could not see myself on this type of med for any length of time. i was probably ready to jump to a higher dose and that scared me alot, because the dependance was something i did not want to admit to but had to face.

i wish you the best. if you have not started your own thread you may want to, there are a lot of patch users that can give you sound advice and support. be sure to let me know if you do.

nancy

[FATBOYHARLEY711]

I hope you are still off of them. I have been on them for 5 years & I am up to 250mg every 2 days. I think my addiction is worse than the pain.  I know I have a rough road ahead of me the next few months. I go to the doctor tomorrow to get off. So Good luck!

[mo2000]

Hi there!! CONGRATS on your month clean!! That's awesome, and I'm so, so sorry to hear about your chronic pain that you now have to deal with after the horrors of withdrawals are FINALLY through!! It really makes me realize that I have been blessed by God not to have such constant pain, and makes me realize that recreational use is almost an INSULT to those of you who have TRUE chronic pain!

As for a place where you can talk about your pain and find others who have the same issues as you.  There is a Pain Management group right here at Medhelp!! I have checked it out myself (just out of curiousity because you see a lot of them come from over there to over here after some time), and it sounds like exactly what you need! They can help you with homeopathic suggestions and just NON-OPIATE suggestions in general!!

Good luck to you, I can't wait to be where you are at.  You give me TRUE inspiration, because if you can deal with this pain on a daily basis, not to mention the mental "normal" withdrawals that any opiate addict experiences, then I can DEFINITELY do it!!  Thankyou and Congratulations!

[iwantoff]

hi
it is now one month since stopping the fentanyl .... this is good but the downside is I HURT something awful. i am trying not to sub for the tylenol 3 or the klonopin, but holy mother of G...D it hurts.
now i have to get past this and i dont know how. is there a such thing as chronic pain anonymous because i would join up ... this is ridiculous. i have buying books to read on the topic - i swear it feels as though my heart will stop ticking or if i stop breathing long enough to catch my breath in hopes of some kind of relief in between breaths.

[iwantoff]

hi
just an update ... i have stopped the fentanyl patch completely. with exception of the 5hrs i had it on last friday (03jul09) it is now a week plus. i have pain but that is something i knew would not change - as for WD, can't say that i am having any, at this point, i am in too much pain and difficult to recognise any if they were present.
the patch although i did not think was doing anything, obviously was but not enough. i would have been at the point where i would have been increasing and upping the dosage and this did not sit right with me which is why i wanted off and sought advice online and came accross this forum.
thank you all - if it were not for your support and time and caring i would not be off this med now. i now have to accept that i have chronic pain, and deal with it because meds only offer temp relief and even the fentanyl was not truly 100% effective. knowing this, i will never go back on this type of opiate/opioid at least not of that strength - tylenol 3 is a narcotic but there is no comparison as long as i do not abuse it and keep it in check.

again thank you
Nancy

[saphire1]

sorry to here about the stomache pain your going thru.  dont  give up.  Ive had for the past week tappering and getting off the tram.  Although you don't think so right now it will get better. My prayers are  with you.  

[whitie]

just work on tapering off, for now......................we'll work on the rest later.

keep fighting it.  in time you will win over this !!!

[iwantoff]

HI GUYS
I AM DOING FINE I GUESS ... MASSIVE ABDOMINAL CRAMPS. THOUGHT MAYBE I WAS HUNGRY SO I HAD TWO PIECES OF TOAST . . . NOW I AM SUCKING ON TUMS .. I THINK I MISSED A T3 AND KLONIPIN DOSE CAUSE I WAS FEELING PRETTY GOOD ... what a mistake. so now i have succumbed to the patch again. i am timing it so i will not have it on for more then 3-4 hours, just enough to get some of that **** back in my system so some these damn WD symptoms can lighten up and i  can resume my journey to the land of the clean and free.

[tylersblueeyedmama]

I just read all your posts and I have to say....You are truelly amazing and an inspiration!!  I felt so moved by your story and you words!  I wish you nothing but the best of luck and keep on fighting :)

Please keep us all updated on how you are doing!

Take Care

P.S. This group of people here are absolutely wonderful!  I feel as though its like a second family here!  Everyone here knows what everyone else is going through in one way or another, so the advice that is given is from their own experiences.  People here really do care!

[iwantoff]

in response to your questions ... i have not been on the patch all that long ... four maybe up to 5 months .. it never worked for me ... i have always had pain even when on the patch. i have pretty horendous pain all the time and even now as i write you but i will not stop until i am off the patch completely. i was to have put one on last night at 11:30pm and so far have not. i guess i have reached my midway and so far so good. just unreal cold. just in case, i carry my patches with me just is case but so far i have held off.
if on a high doseage, my suggestion to anyone is to have the doc px different dose patches this way you can up and down and fool your system and eventually go down, down down safely without too much distress. this may be why my WD is not so bad (so far). that and the fact that i continue to use mild narcotics (tylenol 3) and clonazepam known as klonipin. this latter med i am told is non-addictive, helps with sleep and muscle spasms and above all it helps with the anxiety and we know that this comes with tapering off this patch.
hope this helps

[whitie]

synthetic opioids, are actually better. they tend to have a hydrogen atom attached for digestion. I believe oxys have two atoms attached. same chemical make up, but one is man made and better/more effective.  there was a formula I once seen,something like this, where 3 -10mg hydrocodone norcos was equivelent to 15-20mgs of morphine.


people often dont realize that sub and methadone are nothing but opioids too, invented by nazi scientist as a wonder analgesic(pain killer) the only thing good about them, is they dont harm the body's organs, like the aceta/hydro does.  but I found methadone to be a worse drug to go CT on, takes longer and just as bad.

[iwantoff]

i am not an expert on this topic but have been doing a lot of research ... s/h done this before i started on it but like most, when the ship is sinking, we will hook onto anything even it is log with nails.
at the time, i felt i had no recourse.

i am down to 12.5 and last changed the patch on sunday night @ 11:30pm. i am freezing in 100d weather and my skis feels like it wants to crawl away. have not ate a real meal in days (a bowl of soup yesterday) and am loosing weight .

once the worst of this ordeal is done, i will rethink and restrategise my goals and what i want out of life keeping in mind that my chronic pain is still there (seems worse now) so the fentanyl was doing something but not enough if you ask me to warrant all the side effects and ill feelings while on it and above all the fear to come of it.

[Mike_B_]

Anything you can do to not use the fentanyl the better off you are.  I had a doctor that gave me hydro for my back and I only took 3 a day for years and then all of a sudden he said you need to do these patches because my pain was waking me up at night.  I did them for about 2 months and told him they were too strong.  I was not able to function so he put me back on the hydro for about 2 month and then said I needed to take a extended release pill which was opana.

That one really messed me up.  I ended up talking to my cardio doc and he said you need a new doctor.  My back hurt so bad during my last procedure I thought I was having another heart attack but my doc said, it's your back that hurting so bad because I had to stay in one position on my back for about 8 hours.  So I have been going to a lot better doctor for the last year.  I still have a bad back that can't be fixed so I still take the hydro's but I have been able to take it as directed.  Until I started taking a statin drug for my heart.  I've had heart surgery 4 times because of chemo I took when I was younger.  The statin (crestor) just made me hurt all over and I could not get my pain under control at all.  But, I talked to my doctor and he listened and we made the choice to stop the statin for awhile and I can now control the pain like I used too.  Crestor was the only thing that had changed so we looked at it first and alot of people have problems with it you just don't hear it from the commercials or the drug companies.

My advice is talk to your doctor.  Some of us have to use pain meds to control our pain.  Just make sure you don't take things that are more than you need and talk to your doctor.  If they don't listen then find a new doctor.  I know how you feel about being in pain.  I have never looked sick but almost died from cancer in my 20's and have had 4 heart surgery.  My doc always says at least you look good but he knows how bad I hurt and makes sure I have what I need to control the pain.  Find a doctor that listens and will help you.

[iwantoff]

thank you for your interest ... did you know that fentanyl was the patch of death ... meaning you could only get it if you were dying - generally px to terminal cancer patients as it systematically releases the drug each hour. when the med community came out with something else, then the patch was approved for mass distribution as a pain aid, only thing is we "HAVE TO LIVE" with the consequences.

terminal patients did not have to think or worry about any long term repercussions. this and obvioulsy Mr or Mrs Fentanyl rake in more $$ for this med invention because fentanyl is man made  ... it is an opioid not opiate the difference between the two is an opiate is in its natural form (grows from the earth ie: comes from the poppy seed) whereas an opioid is brewed in someones lab which is why they can mix it to the strength it is currently (80x stronger than any opiate)

[whitie]

those patches have lawyers hovering around them like buzzards !!!



the only time those should be prescribed, is when someone is in major pain.  they are a dangerous drug from what I have read.


sorry to sound like I am paranoid as hell, but man getting off them is a great idea.

[NautyOne]

Thank God you caught this early.........Fent. is the absolute DEViL!!!............Congrats on choosing alternative treatments.  It wouldn't have been long before you were on 200mcg..........I am very happy for you.  You can do this..............

I wish you the best.

luv,
Nauty.........................

[iwantoff]

hi
thanks for the reply.
chronic pain is a ***** .. it came on slow and i was able to keep it in check, but now it controls me. this is why i am at this pain clinic - i go every week x 8 wks so far and figure i still have another 4-6 wks to go. it does help in the sense that they teach me how to get control and keep and when spasms/pain creep into the picture to recognise it sooner then later and take action with the various coping skills from stretches to breathing techniques. still, i am told it is a permanent situation that i must endure as is yours.
try asking your doctor about pain management programs. i know the botox injection i am hoping to get next week is a temporary fix but if they hit the right trigger point, they can administer a more permanent fix. usually though, a person becomes a sort of pin cushion until that happens but i am willing to do it .... anything for relief.
it does not seems fair to have to deal with such pain and discomfort all the time and to put off or have to hire or better yet just not take part in activities i used to love.
i am headstrong and do not give up easy, but i do feel defeated a lot of the times and that is when i have my personal pity parties and cry up a storm. my girls (3 bichons and a kitty) do not understand these moments and offer comfort in their own way.

ps. i was to apply a patch last night at 11:30pm but held off and still have not. before i got down to the 25 i played with the patches as you do - mix and match and i think this has fooled my brain/body ... i really hope so, because i do not want any added pain or discomfort ... i feel i have had enough to last a lifetime. so far i have not had to reapply but i faithfully take the other two meds regularly and by the clock ... and i am sure these are my lifeline and keeping the WD at bay.

i started with migraines from the age of 15 to 45 and they stopped on their own. i took immitrex and many other meds and often was admitted to hospital for the magic drip. i have endured endometriosis and at the ripe old age of 32 had no alternative but to have a total hysterectomy. since i cannot have children, i have pets ... they are my family along with my people family (parents/sisters/brothers and numerous friends).

when it comes to the fentanyl and the chronic pain, people, not even family and friends can put a tag on it and they cannot truly appreciate or understand what we go thru. i think sometimes, they are of the opinion that it is all in my head. my response is that if this was the case why am i prescribed the type of meds as opposed to psych meds ...

my own fam doctor does not understand. when i started visiting his office more than he thought i should, he px the fentanyl x 1 yr and sent me packing ... how is that for understanding. i still go into to see him and he is borderline rude when i tell me that the fentanyl is not helping and i need something else. this is where the tylenol 3 and clonazepam come into play (i was calling clonidine but think i had it is klonipin - a typo, sorry).

i will continue to post and really appreciate your support. from other posts that i have read, the WD from the Fentanyl can continue to linger long after being off the patch. i wonder if it is because they do not have another med support / back up system?

nancy

[Nikilee]

Hello nan,

I am up at 2:30 am our time.  I have brought myself down on the patches, as I said earlier, much faster than the neurologist advised.  If you have the luxury of following his taper, I think you will do well.  I did not know about clonidine or Tylenol 3.  How do they help?

Tonight, visiting my sister who lives about 30 minutes away from me, my right leg started its involuntary little kicking movements and that is my sign to take measures.  I changed out my 12mcg. patch earlier than I should have...and taking the advice of  Corey I cut the patch I WAS wearing in half and stuck it on with athletic tape.  I didn't want to change out the patch so early, but I was afraid to drive home with my leg feeling that way.

I know that we can both kick this, since we both want to so badly.  I, too, am a chronic pain patient (diagnosed as fibromyalgia, but I am just not sure...)  My worst pain is in my shoulders and neck and chest.  I had some trigger point injections about 2 weeks ago.  They worked some on my right side, but hardly at all on my left.  I began with the 25 mcg. patch back in November for the same reason you did, then had a bad accident (fell from a ladder and broke pelvis and 6 ribs) and they stuck a 75mcg. patch on me.  So that is what I have come down from.  The pain patch does NOTHING for my shoulder/chest pain.  The thing that worked best for me were some other kind of injections (that were done under anesthesia, but I can't remember exactly what they were).  The relief lasted 3 months.  However, I developed shingles in January, just out of the blue...and am wondering if it had anything to do with the steroids in the injections (which lower your immunity).  So I am kind of afraid to do that again.

I have been reading quite a bit about taking large doses of Omega 3 fish oil for pain and so am trying that.  I will let you know if it does anything for me.  Sounds like we can encourage one another, being somewhat in the same boat. Keep me posted.  For some reason, I am not getting notified when I get an answer, but will try to check each evening to see how you are doing.

~niki

[iwantoff]

Thank you Corey411 AND Nikilee
i am down to the 12.5mcg Fentanyl patch - applied @ 11:30pm on Sunday night. Was due to change the patch at 5am on Sunday (I am an early bird) but held off till late that night – mostly out of fear of experiencing WD.
I will reapply a new 12.5 patch tomorrow night in keeping with the 72hr/3day schedule.
From what you have written Nikilee, I could or should reapply another at the end of that 72hrs and I will consider this depending on how I feel. As much as I want to call it quits sooner than later I will reapply another after that 72hrs and I may just leave it on till it falls off ... get every last drop however minor amount releases into my system.
I am taking klonidine and Tylenol 3 to help keep my levels up and to keep the wd symptoms to a minimum while tapering of the Fentanyl. I plan to continue on these meds afterwards ….. not much choice since my chronic pain is not likely to disappear.
I want to clarify that I am not addicted nor am I dependant. The Fentanyl was my choice and my doctor agreed to in my desperation to get a handle on my chronic pain. This med has done nothing for me. I increased form the 12.5 to 37.5 mcg in a hop and skip and still have yet to have any type of relief. I take T3 and klonidine and these meds appease some of the pain and discomfort. The Fentanyl in my opinion has not had any effect: it has been nonexistent, to minimal if anything... I have spent more time waiting and wondering when it will do something and for some time now, I have wondered what the point of taking it has been. I persevered always waiting for the fix, wondering how much must build up in my system, but relief has not ever come.
I have done a lot of research and reading in this forum and abroad and know that with any opiate or opioid, WD will occur regardless if there has been any benefit from the med. This is why it is not recommended to do a CT of any drug and tapering is recommended.  CT can be done if usage has been minimal (i.e. in the case of Fentanyl 1 or 2 patches) I first started the patch in Oct08, applied 1 patch, got severe cramps and stopped.  4 months ago, I was desperate for pain relief and tried again … what a mistake cause look where I am now … scared and wanting off.
I am going to make it… I am stubborn that way … but I do still need support. In hindsight, I am glad the Fentanyl did not work for, otherwise, I likely would likely have increased dosage and my usage would have been longer and WD much worse.

RIGHT NOW I AM HAVING SOME WD - NOT TOO HARSH BUT STILL FEEL CRAPPY... STOMACH CRAMPS, HAVE NARCO NOSE (CHRONIC DRIPS/SNIFFLES), AM QUITE JITTERY, HAVING MENOPAUSE-LIKE HOT FLASHES WITH ALTERNATING CHILLS; ALL THIS EVEN THOUGH I AM AT THE LOWEST DOSE OF FENTANYL.  I AM ABOUT DUE FOR ANOTHER T3 AND KLONIDINE HIT...THE CHRONIC PAIN DOES NOT STOP. AS MUCH AS I AM ANXIOUS TO BE OFF, I DO AND DONT LOOK FORWARD TO THE “NO MORE PATCH”……… JUST BECAUSE OF THE WD AND THE ADVERSITY OF IT ALL ... WHO WANTS MORE PAIN ... REALLY! BUT I WILL DO IT WITH YOUR SUPPORT.

PS
I am also attending a pain management clinic – this clinic does not administer meds or deal with drugs, their strategy Is in dealing with chronic pain (physiological and holistic elements) – I am in my 8th week and this is more reason why I want off this useless med. I am having more benefit from this form of therapy than I ever had from the Fentanyl … although I am told that there IS no permanent cure just better approaches on how to deal and handle the pain.
I said I was stubborn … I also see a pain specialist next week and hope to have Botox injections in my trapezium area as this is the root of my pain – the trapezium muscles involves the cervical/thoracic/scapular and shoulder area … I call it the devils triangle because if it is not one area hurting it is all three.
Sorry for blubbering but this is part and parcel of my recovery/jitters I guess... Better a keystroke then a stroke.
I have only been on the Fentanyl patch for 4mths and to many, the dosage and time of my use is probably comical, but it is something to me and does scare me. If it had not, I would not have sought out this forum and I am grateful I did.
The experiences everyone is willing to share is mindboggling and impresses me and gives me comfort and above all support at all hours/day or night, something, that my own GP would never be able to provide (he must of flunked the people skills part of his exam)  

nan