How to get off the Fentanyl patch?

[A man of faith]

After having a nerve condition called reflex sympathetic dystrophy a lot of the symptoms miraculasly disappeared!  Unfortunately for over 7 years I've been on the Duragesic Fentanyl patch....2 100's every other day.  I've cut down to 100 every 3 days, but the pain is just awful some times.  Would it be best just to quit cold turkey to get it over with or continue slowly reducing it.  I would sure like to be off it to see how I'm really doing.

[chefmiche]

I had been on Fentanyl for over a year when diagnosed with Advanced Breast Cancer, Mets to Bone and had some pretty painful tumors in my hips.  I had surgery 6 mo ago to take the tumor in my hip out and replace with cement where the hole was.  At that time I was up to 225 mcg and have been gradually coming down.  I was at 100 for a month, then 75, 2 weeks, 50 a week, 25 two weeks, then 12 for a week and last week (6 days ago) I took off the last one and have been feeling restless, and uncomfortable every evening.  I had norco 10/325 for breakthrough, which doesn't help but last night I took 2 benedryl and 2 norco after taking 600 mg ibprophen 2 hours prior and I slept well.  I feel fine during the day but at night is my problem.  There were 2 days last week I had no energy and slept all day (just had probs at night).  As I type this now I am feeling that resless feeling again.  I asked my oncologist nurse today after my monthly treatment and she said she would call me to give me a solution, but haven't heard yet.  I am hoping it will go away soon.  Good luck to all!

[Sunny321]

Hi All,

I am new to posting here, but not new to reading and I have a question I hope I can get some help with because a lot of you guys seem to have great advice!  I am 35 years old (female) and when I was 15 yrs old I was diagnosed with a degenerative joint condition, along with MS and a few other things (endometrosis, cluster migraine headaches, etc.).  At this point, I am obviously also a chronic pain patient as I have been in extreme pain for 20 years (I do not work and am considered completely disabled; I walk with a cane, etc.).  I was on Oxycodone and Oxycotin and Vicodin from the time I was 15 till I was about 25 and then I was switched to Fentynal patches because I was taking too many (prescribed!) pills to be safe for my liver.  My prescribed patch dose is 175 mcg every 2 days (so I am wearing one 100 mcg patch and one 75 mcg patch) and I take about 30 mg's of Oxycodone daily for breakthrough pain - or should I say I was.  I have recently decided that I REALLY want to get off the patches, at least for a little while so I can see how much residual pain I am truly dealing with.  In addition, I am SO tired of being forced to use the patches.  I don't want to be in pain, however, I am tired of feeling like an addict, which is exactly how I feel every time I am late putting on a new patch and start to have w/d's or every time I am rushing to get to the pharmacy before they close to fill my script filled (and I am always going on the day I am out of patches because my insurance will not cover it even one day early).  At this point, I would rather at least TRY the pain then never know if I can do it.

I talked this over with my pain doctor and he said no, absolutely not.  I spoke to my specialist (who doesn't prescribe the meds but obviously knows I take them) and also got a no and I talked to my family doc who also said no.  I am determined to at least see what my life is like with out these patches and see what my pain level is like all these years later.

So, over the course of the last 30 days, I went from 175 mcg every other day down to 100 mcg every day (so just one 100 mcg patch that I replaced every other day) and then I cut out the daily oxy's completely.  I was doing well with that and stayed at tht for a week and then because I still felt alright, instead of dropping to 75 mcg, I just went ahead down to 50mcg (so for a week I have been at one 50 mcg patch every other day).  I use the Mylan patches so I can cut them myself.  I am doing so-so.  I am in quite a bit of pain but it doesn't feel like w/d pain (or at least not all of it), it feels like my old, reliable bone and joint pain.  

I am ready to drop down again and this time I will be going to 25 mcg every other day.  I have tried going three days on a patch instead of 2 but that doesn't seem to work for me for a few reasons.  One, I have very oily skin and the patches peel - even with just two days I have to use a Tegaderm and waterproof medical tape and the tape peels off on a daily basis.  Secondly, for some reason I have been running a high body temperature for about the past year, which none of my docs seem to know how to fix or what's causing it and so the patch definitely doesn't last three days.  So my plan is to go to 25 mcg for a week and then drop down to 12.5 mcg (and I have heard from a lot of people that this is the drop that hurts).  


My question is, how hard will it be to stop at 12.5 mcg?  Anybody with past experience?  I know that 25 mcg is approx. the same as 30 - 60 daily mg's of Oxycodone so I would assume 12.5 mcg is approx the same as 15 - 30 mcg's of Oxy (and of course, I know that Oxy is MUCH easier to quit than Fentynal, the w/d's I have had from Fentynal are a bear and make the old Oxy w/d's seem like a cold compared to the Hell from the patch w/d's).  I know I am going to be sick, I am aware that it won't be pleasant but how bad are we talking?  Sweats, vomiting, diarrhea, chills, severe aches and pains, muscle and bone pain, sleeplessness, restless legs, anxiety, fever...will it be the whole thing?  And will I most likely still suffer protracted w/d?  I really want to do this but I do have a 10 yr old daughter and I can't have w/d for two or three months because that, coupled with my pain, will be unbearable.

I just wondered if anyone could advise me on their experiences, please.  I have been doing ok stepping down - I don't feel great but I don't feel awful.  

Any serious advice or comments welcome.

Thank you,

Sunny

[MZdmorbidF]

I have ankylosing spondilitis and I've been on 100mcg of Fentenal patches for about 9 years now and I put a new one on every 72 hours. Sometimes I get to the point that my feet and legs won't be still and want to jump around, and under my fingernails I have to keep pushing my skin back and forth I know it sound weird but I'm not sure if all these things are because of the patches. I don't think I have any bad reactions because of the patches. I know I am very addicted to them, but when I weigh out the symptoms from the patch verses the pain from the AS Unless someone comes out with something better, I will stick to the patches.

[worthy1]

I have been on the dreaded fentanyl patches for 3 or 4 years. Apart from being a fantastic pain killer regarding my back condition (spondylolythesis) actually the only med that worked. They had some other side affects which almost cost my relationship due to often becoming loud and sometimes un-bearably aggressive in tone. I decided to come off the 75's in order to keep my partner. I have no doubt some will think I am some kind of crank but I was so desperate I just took off the patch at about 2pm. All was well until I awoke from a sleep at 11pm with a headache from hell. Nevertheless I was not going to be able to sleep because I felt as though I really needed a replacement patch. By 2am I felt as though I was ready for being carted off to hospital. I was frightened in that I knew a replacement patch would take ages to work and I was at the end of my tether. The day was saved when I took a teaspoon of Oramorph (for breakthrough pain) which enabled me some composure and even a small sleep for a couple of hours. When I woke I just wanted to scrape my skin off. A long story short I found I was able to challenge and beat the devil in a patch. I refused to put on another patch and suffered no sleep or very little for about 2 to 3 weeks. Main problem was skin irritation which was eased by copious showers and baths. I refused to go out during this time but I am pleased to say I did come off the patches completely. However, after some months with just the occasional teaspoon of Oramorph for severe back pain, I found this not to be enough pain relief however I am now using just 25 patches and put up with some pain. The use of the fentanyl resulted in me loosing weight thus slightly easier on bottom of spine. SO it can be done but be prepared to meet the devil himself for a while, and if there is someone who can give you some help and support I did it so can you if you are determined. If you live in the UK I would be more than happy to help if I can. Its something they dont usually tell you about.  John.....

[worthy1]

I have been on the dreaded fentanyl patches for 3 or 4 years. Apart from being a fantastic pain killer regarding my back condition (spondylolythesis) actually the only med that worked. They had some other side affects which almost cost my relationship due to often becoming loud and sometimes un-bearably aggressive in tone. I decided to come off the 75's in order to keep my partner. I have no doubt some will think I am some kind of crank but I was so desperate I just took off the patch at about 2pm. All was well until I awoke from a sleep at 11pm with a headache from hell. Nevertheless I was not going to be able to sleep because I felt as though I really needed a replacement patch. By 2am I felt as though I was ready for being carted off to hospital. I was frightened in that I knew a replacement patch would take ages to work and I was at the end of my tether. The day was saved when I took a teaspoon of Oramorph (for breakthrough pain) which enabled me some composure and even a small sleep for a couple of hours. When I woke I just wanted to scrape my skin off. A long story short I found I was able to challenge and beat the devil in a patch. I refused to put on another patch and suffered no sleep or very little for about 2 to 3 weeks. Main problem was skin irritation which was eased by copious showers and baths. I refused to go out during this time but I am pleased to say I did come off the patches completely. However, after some months with just the occasional teaspoon of Oramorph for severe back pain, I found this not to be enough pain relief however I am now using just 25 patches and put up with some pain. The use of the fentanyl resulted in me loosing weight thus slightly easier on bottom of spine. SO it can be done but be prepared to meet the devil himself for a while, and if there is someone who can give you some help and support I did it so can you if you are determined. If you live in the UK I would be more than happy to help if I can. Its something they dont usually tell you about.  John.....

[jr52]

they have given me 7 days to get off the patch b4 my bk surgery i am on 75 x 3 days i have been on 4 5 yrs now what i am told it can not be done by my pain clinic these clinics suck they make u feel like u r a dope addice when after 5 bk surgeries i am in such pain they started me on all these.i don't know w hat to do last time i went cold turkey and it was bad