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fentanyl patch withdrawal

jen2012
Posts: 1443
Joined: Aug 2012

Has anyone had experience with getting off the fentanyl patch?  My husband was put on a high dose back in nov because of bone mets resulting in a femur break in the right leg, a femur hairline fracture in the left.  Rods were put in both legs.  He had a tremendous amount of pain from the cancer, break and surgery.  His dose was 275 every 3 days.  Once he got home we noticed he was miserable after about a day and a half with withdrawal like symptoms.  Doctor said to change patches every 48 hrs.  Things were going ok, though that second day is still tough.  I change the patches around 10 pm.  The next day he's great.  Following day he's getting the chills and sleeping most of the day.  These patches are nasty stuff.  After about 4 weeks of not using any dilaudid for breakthrough pain, the doctor agreed to reduce the dose to 250.  That was almost 2 weeks ago. Today I asked about next dose change.  She said to go to 200 tonight.    So I did around 10 pm and he has been miserable...sweating, chills, restless, stomach cramps.   Around midnight I put the 50 back on and emailed the doc and said I think it was too much too fast.  I thought it seemed like it would cause  a problem, but shes the doctor, what do I know.   Has anyone successfully gotten off these things without major issues?  From what I'm reading online , it more addictive than heroin.  Kind of scary.

 

sharpy102's picture
sharpy102
Posts: 353
Joined: Apr 2009

Hey Jen:

 

It was my Mom who was using that patch and she was on 400 and boy, yes, it is very very hard to get off of it. In our case, she didn't mean to be off of it, but sometimes it did happen that we forgot when exactly the 48 hour was...indeed, sometimes after the peak of 24 hour she was feeling worse and worse even though she was no way close to 48 hours yet. She was the same way as your husband, sweating, chills, resetlessness. So, I'm sure getitng off of it is just as hard as when on forgets to put the new ones on on a precise timely manner. I almost think even going down by 50 is too much, but then I'm not sure financially it's worth to buy the 100s and 25s sepearately because then you could reduce dosage by 25s instead of 50s. And I think even 2 weeks might be too short, especially with a 50 interval down. It is quiet addictive, so you guys have to do it small steps, with small dosage intervals, and longer time frame so that it's not that shocking to the body/brain. Like get to the point when he is completely feeling okay with say 200. Then once he feels awesome with it, then go to 175. He'll have a week of bad feeling, but wait until he is again completely comfortable with 175 and then reduce by 25 again. I think every two weeks dropping 50 is way too huge change. In that two weeks the body/brain has not even got used to the lower dosage yet. Good luck to him!

jen2012
Posts: 1443
Joined: Aug 2012

Thanks for the reply. Yes I think it was just too big of a change. He's been up all night. I'm hoping that's the problem and not something else. The stomach cramps make me nervous.

annalexandria's picture
annalexandria
Posts: 2423
Joined: Oct 2011

but even on vocodin, the tapering needs to be done in tiny increments.  I think taking off 50 mg all at once is too much.  The one time I tapered off successfully I was on 30 mg a day, and removed 2.5 mg every three days.  So that would be, what...a 3% reduction?  Is that right?  I suck at math.   A little less, actually.  And it took quite a while to get all the way off.  So I think you will want to plan a tapering that is very slow and incremental, and he will probably be able to get off the patches.

Will he have some other form of pain meds?  

herdizziness's picture
herdizziness
Posts: 3593
Joined: Apr 2010

I know nothing about fentanyl patches, I just wanted to wish him the best getting off of these, but agree that maybe doc ought to do it slowly so he doesn't suffer withdrawal symptoms.

Thinking of you both,

Winter Marie

janderson1964
Posts: 1998
Joined: Oct 2011

In all my years of experience I never had a fenanyl patch. I have had vicoden and percocet on a number occasions including yesturdays debacle. Several times in the past I found myself getting dependant on them so I flushed them down the toilet once the pain was manageable without them. I never had physical withdrawal though.

Goldie1's picture
Goldie1
Posts: 259
Joined: Sep 2011

Yes, my husband Pat asked the doc the best way to wean himself off the fentanyl patch.  He did it gradually, lowing the patch dosage over time, and managed to get off of it completely.  It wasn't easy but he did manage to do it with no major issues once weaned.  The things I did notice while he was going through the process, that he couldn't keep his feet still.  His feet were bopping up and down all the time. Or, he would just sit, with his hands covering his face, and his head pointed down, almost like he was in a trance. 

Pat stayed off fentanyl for 14 months but once again, he is back on it.  Pain has returned, no chemo options left, and fentanyl seems to help alleviate most of his pain.   Strong stuff, scary too, but it has helped him greatly when it comes to pain relief.

All the best to you and your husband,

Ellen

rob1114
Posts: 1
Joined: Mar 2014

Hi, I hope all is going better as it has been a few weeks since this post. I have been surfing the web for weeks now trying to find info on tapering off fentanyl patches. I don't have cancer but I have battled chronic pain in my lumbar region for years after failed surgery, physical rehab, multiple annular tears, and more visits to the ER than anyone should go through in a life. I am so sorry I ever started fentanyl and I have used it exactly as prescribed for three years. It does not work for 72 hours period. It is best in the first 24 then slowly tapers off. I have discovered this from the beginning dose of 25mcg plus oxycycline for breakthrough pain. I moved up to 50mcg every 48 hours and have pushed back to 60-72 hours per patch. I have been using sandoz which by far works the best over time. In the last year I have stopped all oxycodone, neurontin, cyclobenzaprine, valium, and 50mcg fentanyl is my last hurdle. I am moving down to 25mcg this weekend for two months and then down to 12.5mcg for the last two months. I am thankful for the pain relief but not becoming physically dependent. I guess it is par for the course but I feel like a prisoner. I just want to support anyone that needs some help and support and I guess I am looking for the same. In my research, so many people abuse this drug and others and it makes me so sad. My pain has been enough to try to manage. I will post how I am doing in about a week or less depending how I feel. My pm doctor told me most of the battle to be free is in the mind. That is where you draw your strength. I am not underestimating anything. I know my will is strong but it is going to be tough. I wish the best to you and hope your withdrawal is coming along as well as can be expected. You will be in my thoughts. Sincerely, rob

jen2012
Posts: 1443
Joined: Aug 2012

Had that same situation Ellen..the feet bouncing, etc.  It does seem to control the pain very well so as long as the patient understands how difficult it is to get off of, its great for pain relief.  Hope Pat is feeling well.

jen2012
Posts: 1443
Joined: Aug 2012

Thanks all, we have been taking it slowly.  Tapering by 12 mcg every 6 or 8 days.  Slow going, but hes down to 200 as of last night and says he doesnt feel the change.  May try dropping to 175 in a week or so.  You are right Rob, it really is just good for a day.  I changed them last night so today would be a good day..unfortunately its also a chemo day.  Tomorrow he will be sleepy and crabby.  Dr doesnt think its related to the patch...how can it not be.  I dont think anyone truly understands unless they are living it.   Would love to have these out of our lives and house!  Lots of fentanyl mixed with heroin ods in the news lately.

 

Good luck Rob, I hope you get off of them successfully and still control the pain.

Sundanceh's picture
Sundanceh
Posts: 4410
Joined: Jun 2009

My pain  mgmgt doctor said doses over 200mcg get really tricky with the breathing.  Since he's not doing Dilaudid, there may be some wiggle room here, but be careful although I know what the pain feels like and how easy it easy to add more mcgs's......I've done the same thing over here.  I was sitting at 225 mcg and my guy had a fit....said he was not comfortable with me going over that amount. 

But pain can drive us to things....I know it has me.

But I'm sticking with 200 mcg righ tnow.......

I"m not withdrawing I have to stay on them for now, but just commenting that I'm rowing in a similar boar as you find yourself.

My doctor even wants to add another anasteshesia type drug that is compouneded that really scares me with all the suppressants I got going. 

Anyway, good to see you still given the cirumstances......they published another quote in the Coping magazine this past month......I believe it appears it on the Coping FaceBook website. 

Take care!

- c

jen2012
Posts: 1443
Joined: Aug 2012

Hi Craig - I was excited to see your name!!    He's still at 200, hoping to go down to 188 or 175 Wed or Friday.    It is the most bizarre thing to see him acting almost normal one day and the next day he sleeps most of the day and is just feeling crappy.

Weren't you getting some nerve block thing done?

Glad you got another quote in - awesome!!  Hope to see more of you around when you are up to it.

 

annalexandria's picture
annalexandria
Posts: 2423
Joined: Oct 2011

So nice to see you here, and sounding a bit more like your old self!

How are you doing?  Did the pain block help at all?

And I'm going to check out the Coping FB...exciting to hear that they are using more of your wise words!  Maybe you can become a regular contributer when you get back on your feet. Laughing

Longbeachone
Posts: 1
Joined: Apr 2014

I've been on Fentanyl for four years, and twice went through withdrawal due to running out a few days early.  The first time was terrible, horrific.  The second I was prepared.  I used Loperamide (Immodium or any generic loperamide), 20 mg per day, and Kratom leaf, 6 grams, per day.  These two legal, over the counter drugs (Kratom had to be ordered from a botanical website) removed 90+ % of the withdrawal symptoms for me.  

There is such hysteria surrounding these heavy duty drugs....doctors are quick to prescribe but if you've got a problem and need an early refill (twice in four years, both due to problems with the darn things staying on) you are on your own.  There are prescription drugs that will greatly help withdrawal, particularly benzodiazepines like valium and such, but I was on my own.  The meds I found worked very well.  I wasn't up and dancing, but I wasn't screaming in agony.  

 

I hope this helps you or anyone else dealing with fentanyl withdrawal.

 

 

 

jen2012
Posts: 1443
Joined: Aug 2012

Hi longbeach one , thanks for the post.  I'm glad you found something to help you.  It is ridiculous the way the medical community handles this.  

My husband is down to 75.  Been decreasing a little at a time.

carrieh
Posts: 119
Joined: May 2012

Hey,

I hope he's doing better. I spent months in the hospital on a pain pump; like ten times more dilaudid than the average person and two fentynal patches. It was crazy trying to get off of that stuff. Yes, it was pretty miserable. I had to be hospitalized a few times because I would throw up/ go so much that I would get severely dehydrated. Bless his heart. Just take it really slow and don't try to push it. The hospice doctors (even when you aren't on hospice) are usually really awesome helping with this sort of thing. They understand pain and higher doses of meds much more than other doctors, because they deal with it everyday.

It took me months to kick morphine, fentynal, and dilaudid...but I went super super slow...there's no need to suffer more. Now I only take two Percocets a day to help me get up and around. You can do it! Just do what you think is best, and if your doc isn't understanding ask for someone else. My mom asked specifally for the hospice doctor and he didn't mind helping at all. Very compassionate.

Hugs,

Carrie

cydney haynes
Posts: 2
Joined: Jan 2015

Does anybody know of reputible online source to get Kratom for withdrawing from Fentanyl patches? About how much would it cost? Is longbeachone out there? I first heard of it from him....anyone know how to contact him?

jen2012
Posts: 1443
Joined: Aug 2012

Hi Cydney, looks like longbeachone was only here that one daY.  Sorry I don't know about Kratom , my husband has been off the patch for some time now.  He just came down on the dose a little at a time.  Good luck!

ron50's picture
ron50
Posts: 1372
Joined: Nov 2001

Fentanyl patches are downright dangerous. I was not on them very long but you seem to get hooked quickly. I had bad dreams on them but my main cioncern was that they really appear to be a very poor delivery sytem for the drug. You can't shave where you put them , you might overdose , You cant clean the skin with spirits , you might overdose. You can't even use soap just plain clean water. That does not clean oil (I am a mechanic) either natural or unnatural. In the end to get off them I just taped a patch on my arm and left it there to gradually run out of juice. I took it off after about a week and a half and I was ok. I am on targin now which combines oxycodone and naloxone. I don't get high,have nightmares or anything , just constipation and that is a whole different story.. Ron.

RickMurtagh's picture
RickMurtagh
Posts: 552
Joined: Feb 2010

I started with high dosage patches after coming come from the hospital after my last surgery. I'm decided I did not need them any more one Sunday afternoon.  Huge mistake. Was in huge pain and went into withdrawals within an hour of not making a recommended change. I immediately put on a patch and within a few hours all the symptoms went away. I spent the next two months gradually reducing the dosage (different patches).

after I used the last low dosage patch I had flu like symptoms for a whole evening. I went to sleep and when I woke, I was fine. At least from the effects of withdrawal. Apparently the odd personality quirks and general idiocy was there before all this and was not related to the patches. 

Peace,

rick

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