CSN Login
Members Online: 2

getting off pain meds

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

I need some advice about getting off pain meds. My husband started wearing fentynal patches two weeks before his treatment ended 5 weeks ago. He was at 50 mcg for much of that time, and now both the doctors and Kevin are ready for this to decrease. Last weekend Kevin decided that he would quit cold turkey (a REALLY bad idea!!!), and after three days the real bad withdrawal symptoms began. It was just like they depict withdrawal to be on tv. It was scary and felt out of control, and after several hours I finally convinced him to wear another patch. He is stepping down now under medical supervision. He had one 25 mcg patch left (the one I made him wear) and now we have some new 12.5 mcg patches to use.

My question is, how long to use the reduced strength patches before they can be stopped completely? And do you need some other supplemental pain med after that? I haven't gotten treatment plan instruction on this, and I feel like we need to see where the tunnel is leading us.

Please share how you kicked your need for pain meds.

Thanks,
Karen

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Kevin is doing well this week on the 12.5 mcg fentynal patches, but I am not sure how long he will need to be on this strength before he can reduce again. And what have folks used after they finished the lowest strength patch? And for how long?

K

pk's picture
pk
Posts: 192
Joined: Aug 2009

I wonder about the stepping down process too. My husband is 6 weeks out and uses 12 hr release oxycodone(10mg) twice daily. He can pop a vicodin for break thru pain if he needs to. He uses very few vicodin in a weeks time. His oncos told him that in the next 3 weeks he should wean off the vicodin and see if the oxycodone keeps him comfortable. If not they will readjust that dosage. I know he's anxious to get off the meds as they make him a little foggy in the brain. PK

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Thought I would get some more answers from others, but since this wasn't a hot topic, I will share what it has been like for my husband to step down from pain patches.

The fentanyl patches he used were in this order: 25 mcg to start, then the dosage was upped to 50 mcg. When it was time for him to quit the pain meds, he used one more 25 mcg lasting 3 days. Then he was prescribed 12.5 mcg. He used two of those for a total of six days.

The withdrawal symptoms were MUCH less than when he tried to cold turkey quit from the 50 mcg strength. Only a little twitching and a little loose bowels (as opposed to a lot of both plus vomit before!) He only felt slightly miserable for a little more than a day. Now he is much more like the man I knew before all this cancer stuff started, meaning he is more alert and not so lethargic.

So my advise is to do this under medical supervision, and not try to do the step down process too quickly or on a whim.

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Hi there!! How are you doing? How is it going for your husband trying to get off his meds? I hope well.

I'm still hanging in here. Still not being able to eat food yet. Can't wait!!

Fishingirl (cindy)

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Morning Cindy,

Today is Kevin's first post treatment PET/CT scan. He is really worried and stressing about these scans (and another IV), but I am confident that the results will be positive. His appointments with docs to review the findings aren't until Thursday, but his wonderful radiation oncologist said I could call tomorrow, and he would give me the news over the phone so we didn't have to wait and worry.

Say a prayer!
Karen

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Hi Karen,

So happy to hear Kevin is doing so well. Let us all know the outcome on Thurs. I think he worries too much. lol!!
cindy

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The people best able to advise you on this subject are the people who put him on the drugs, hopefully (the story of another respondent aside).

That said, here, Karen, is what I have learned over the years (please take it with a grain of salt, as I am not a professional):

* Dcotors really do not worry so much about those truly in pain becoming addicts. I am sure it happens, but for the most part, it seems, your doctors are probably are not worried about your hub becoming an addict. Why? Most people take such drugs to alleviate pain and most people try to quit them even before they are supposed to quit them. Simple as that. Besides that, your hub's doctors ARE monitoring his meds, hopefully.

* Most people really do want to be off of the pain meds as soon as possible. However, pain management is an integral part of healing and survival. People who are in pain are less likely, in my opinion, (and personal experience) to want to go on. The first thing I tell my doctors when they ask about allergies is that I am allergic to pain.

* It is not your job, and I mean this kindly, to decide what your hub's pain medications should be. The people you are trusting to care for him in every other way are also, hopefully, at least competent with respect to pain management. Trust them. When you do not, you need new doctors. Until then, trust them. Fill them in, keep them informed, make sure everyone is on the same page, and if you have concerns, let them know, but, ultimately, trust them and trust hub.

* I'm repeating myself, but if you have concerns about hub's pain meds (I've had the fentanyl patches myself, by the way, and am not an addict), talk to his doctors about them.

* Finally, to answer your real question, which is how to manage his step-down program, it is really not your program but his and his pain management team's program. As someone else has already responded, you really cannot mess around with this. It is not your job, you have no experience with it, and it can indeed be lethal to screw around with it.

I believe it is your hub's cancer team's job to step him down, if such is required. I do not frankly remember that being a problem for me. I simply weaned myself of the patch because I am hard-headed. (I am also married to a nurse.)

Best wishes to your husband and all of his loved ones.

It WILL work out, Karen.

Take care,

Joe

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Morning Joe,

Thanks for your message and your concern. Just to set the record straight, I wasn't the one who pushed to get my husband off the pain meds, he and his doctors were. He was supervised the second time he tried to step down, and he did have much less of a reaction. He has been off them for about 10 days or so now. Even after 6 days he still twitched some at night, but nothing like that first time he tried to go cold turkey. He is feeling much better now without those patches. His pain is very low and tolerable, only really hurting when he yawns or sneezes, but not constantly anymore. That is a blessing.

Karen

douginMS
Posts: 1
Joined: Dec 2009

I am a RN as well as a person who has to wear fentanyl patches. The great thing about the patches is Doctors don't have to worry about people becoming addicted too quickly if at all, but most times it's not addiction, addiction is the word used for people who use a medication for a reason other than what it is prescribed. The word most of us have is called "TOLERANCE" our bodies have become tolerant to the medication and we can not just up and stop taking the medication.
The deal with cutting and not cutting a patch has to do with the way the patch is manufactured. Some drug makers make the patch so that is has a gummy like medication inside the patch, these are the patches that should never be cut or tampered with in any way!!! There are other patches especially by the maker MYLAN that are just a flat sticker like patch that have no gel inside the patch, these patches are safe to cut in half to get half the dose.
I guess you could say I have a high tolerance, because I wear three 100mcg patches all the time. I experience no pain and no foggy headedness, nothing other than a little constipation but nothing a simple stool softener won't fix. I have made attempts in the past to wean myself off the patches as well, to no avail so I simply chose to live life on life's terms have no pain and keep going a day at a time. There are very few people with Cancer and certain other diseases who really need to even worry about trying to stop their pain meds as soon as possible because they're afraid of becoming an addict. We are not meant to be in pain!!! If this info helps anyone understand the fentanyl patches and how they work then great.
My mother lost her battle with Melanoma on Oct 19th of this year and she passed away in pain my biggest regret. It was completely out of my control or I would not have allowed that to happen, but somethings are beyond our control. IT is true that people who are in pain give up faster. I wish everyone the best of luck and pray that your outcome will not be like mom's. Though she is in a better place and is no longer suffering, right now that's not that much of a comfort, but I'm sure in time I will learn that God does have a reason for everything. Good luck to all. In loving MEMORY OF SUE MASSEY.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

That is great to hear, Karen! I wish you both the very best going forward and hope that you did not take from my post some sort of judgment of you. I am on record as acknowledging that your job, the caregiver's job, is the harder job. I firmly believe that.

Take care,

Joe

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Hello,
I have been out of treatments for over two years now and don't visit this site as often as I did during treatments.
I thought I'd visit again to see what's going on and saw your post. Weaning off the patch is the right thing to do. Your husband definitely did a no no when he stopped all at once...as he found out.
I just wanted everyone to know that my primary care physician told me to just cut the patch in half to wean off of it. My husband researched it on the Internet and found that you should NEVER EVER EVER cut a patch in half to wean off the dose. It can cause a fatal overdose. I'm so glad he found that out because it could have killed me, and boy did my husband let my doctor have it! Some of you may have seen the commercial on TV about the problems with these patches leaking if they are torn and causing deaths. That's why we couldn't understand why my doctor told us to just cut it in half.
Anyway, I hope your husband will be off of it soon. I decided that I'd rather charge through the pain than be on pain medications...and that's exactly what I did once I weaned off of everything.
It will take a good two + years after treatments before your husband will start to feel himself again. Even then he will always have issues with the radiation side effects, but they are manageable.
Good luck to you all.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network