I'm finally starting to taper off of fentanyl and ween off of oxycodone, I'm severly addicted to the opiates. Every 60 hours or so I start getting "antsy" with severe fatigue and weakness in my leggs, this lets me know it's time to change patches. If I'm not in a position to change patches or I've just changed patches and waiting for the fentanyl to kick, I take 15mg of oxy and that "recharges" me.

I've found that when I am out and about and I get nailed with severe fatigue I can pop an oxy and go the rest of the day feeling "normal". I hate this though as I hate being addicted to this crap and the feeling when my patch goes dry.

Anyone else out there experience this or have any insights on how they came off this stuff?

Thanks in advance

Eric

Just for clarification: addiction is not what you've got. You've got the normal physiological response to being on these opioids for any length of time, consistently. One's body becomes used to them, adjusts to (most) initial side effects, and one builds a tolerance. That is just the way the body works. That's physiological dependence and any sudden stopping of those meds will result in withdrawal symptoms. Actually, it's not just opioids; there are many meds one should wean off rather than quit cold turkey. Addiction is a whole other animal which includes misuse of medication, using it for purposes other than for which it was prescribed, hoarding it then taking a whole bunch to try for some sort of rush, the need to keep obtaining more and more of this substance to the eventual exclusion of all else. Addiction and dependence are entirely different but people use the terms interchangeably. Remember, the first--addiction--is characterized by a pattern of behaviours that may become criminal--buying/selling/trading on the street for another substance w/more or less bang, taking the substances for purposes not even closely related to pain, etc. People need to quit beating themselves up about 'being hooked' b/c yes, the body slowly becomes dependent on the meds, and to minimize withdrawal when those meds are no longer needed, one weans gradually. It only makes sense!

How are you being weaned, Eric? Gradually, I hope?

oh yes gradually. I was as high as 175mcg/hr and now have it down to 75mcg/hr. I just put on my 1st 75mcg patch today and do feel the difference...I've been wanting oxy all evening but denying the urge to take any. Thanks for the clarification, it does help put things in perspective there. I'm feeling sick though, a bit of nausea and the wierd feelings in my legs. The bottle is really calling out to me.

I'm hoping the trazadone and lunesta kick in soon

Your tapering program needs to be medically supervised or you may suffer convulsions and/or death. It took over a month for me to wean off of Fentanyl and my dose rate wasn't as high as yours. My entire phase out was scripted by my oncologist and I still had withdrawals, although nothing unmanageable. (just for the record, some cancer patients I have known personally (pancreatic cancer mainly) have had a 500mcg dose rate - and that's the limit)

Gary, like you, I used my MO for my primary during all of my tx and post surgery. I've just now switched to a PCP that's a GP and he's supervising my tapering.

My grandmother died three years ago from pancreatic cancer and was on a high dose of fentanyl, not sure of the dosage but my grandfather said I was on a lower dose when I was at 175...I figured with her pain she was probably over twice what I was on.

I'm still having issues, some of them stemming from my allergic reaction to an antibiotic (allergice to a lot of them) but I also know some of it is the opiates too, I've been in bed the last two days

Thanks for the input.

Eric

Just for the record, Fentanyl is 100 times more potent then heroin.

If you damage or cut a patch and release the contents on your skin, you can OD on the spot. It is a great drug and many of us wouldn't have gotten through treatment without it but, like electricity, it commands respect.

On the whole Rob dealt brilliantly with medication,but when his patch was running dry he started with sweats and shaking until the last few weeks when his pain was not being controlled by the fentanyl,and he started to use too much liquid morphine.He then suffered a serious episode of Morphine psychosis.That was the scariest thing i have seen since i did my secondment in a secure hospital 30 years ago.About three weeks post tx he tried to reduce his pain medication himself,and he was in a right state with shaking, sweating,tachycardia,hallucinations .When he was on the drugs i dont think either of us was fully aware that his body had become dependant and he never did get off the patches until he was in hospice and had nowhere left on his body they could be stuck!!by then he was on 300mcgs, but they stopped him dead and just put a syringe driver in place which was loaded with such a huge dose of opiates that he never had a problem with the withdrawal of the fentanyl.

For me, I had a bad reaction to the patch (I think I made a mistake and took a hot shower and released too much of the drug into my system), the percocet made me itch like crazy, and the hydrocodone made me constipated...Although, when I was in the hospital for severe dehydration for 9 days morphine was kind of nice.

I'm not crazy about taking and to be honest not organized or dedicated enough to continually pop a pill...I also believe I do not have whatever it takes to get addicted to any substance. I suppose I was lucky because I took less pills because I don't like them...In essence, I unknowingly weaned myself off the pain meds without realizing it.

Good luck...I'm with others on this...discuss this problem with your doctor and do it by the book. You don't want this to get out of hand.


Oh...sleeping pills made me act poorly...

Its a balancing act on the high wire. Healing is hindered by pain so it must be managed. There comes a time when the narcotics will get in the way of healing. A good MO will know when it's time for you to stop. At a certain point, if you are still in chronic pain then the doctors need to look for another reason for your pain.

Ray, ALL narcotics cause constipation, even medium strength ones like Vicodin. Severe hydration problems will also exacerbate constipation problems, so it's vital to stay hydrated. Many here have confided that the worst issue they faced during treatment was constipation.

I've posted several times on these forums the strength of fentanyl as it pertained to heroin and totally agree with Gary in that it commands respect. A few years ago several heroin addicts died of OD when their supplier gave them fentanyl instead of heroin.

My patch has ran dry on me during an HBO dive 30 minutes in to a 3hour dive...I gutted through it but came out of the tank a shaking, sweaty ball of addiction when I got out...thank god for carrying break through meds at all times or I'd have been in real trouble.

I'm still having issues with my lower dosage I think, the last 3 days I've been pretty much bed ridden with exhaustion issues. I'm refusing to pop oxy to give me the lift I used to get from it to function "normally".

I'm trying to get off all the drugs, sleep aides, opiates...all of them really, I hate being chemically imbalanced.

Thanks for all of the input

Eric

According to the Indications For Use, Fentanyl patches have a residual buildup in the blood for around 24 hours so patches can be removed and replaced and a correct therapeutic level maintained. Possibly you are taking too many break through meds? There is a titration formula where the Fentanyl dose rate is increased based on the consumption rate of breakthrough meds. Please do not alter your meds without clearing it with your doctor.

There was also a problem with some lots of patches with the adhesive, causing a low dose rate.

Cancer fatigue is a well known side effect of treatment. And probably only distantly related to your pain meds if you have been on them for a while.

Eric

I hear you loud and clear. Despite my hippie/liberal arts/seminary background and 60s/70s adventures in "better living thru chemistry", I never liked any of the opiates and always found them to mind numbing not enhancing anything. My current condition is only a minor reflection of what you are going thru as I stepped down from the 50mcg patch to the 25mcg and just feel exhausted all the time. Not helped by a infection of "necrotic tissue" from surgery that has put me on antibotics and totally eliminated the constipation issue.
Yes, I find a little pick me up of percocet helps but like you, I am resisting it. Sorry brother that I have no helpful clues or tips or tricks, just empathy and best wishes. You are STRONG enough to work through this tough patch. Again, thinking positive thoughts and sending them your way. Hang in there and keep posting about your progress.
charm

With all of the narcotics I took during and post Tx, I would have LIKED to get a buzz - but it just didn't happen. A funny thing happens when you are getting drugs for pain management - it manages the pain and not much else. Some people talk about getting "loopy" but that's typically when the pain meds are started before the brain chemistry readjusts.

I too was a 60's -70's "better living through chemisrty" person and I was a hippy and lived in Haight Ashbury during the Summer of Love. My world views changed dramatically after my military service in the early 70's.

Charm - they also have a 15 mcg Fentanyl patch to aid with weaning off.

Gary,

With all the talk about the Fentanyl patch on here lately, I went back and tried to find a thread that included PharmGirl. I think it goes back well over a year. I remember learning from her and the other posters, and NOT Dan's doctors or pharmacists, that there is some precautions people should take with the patch when it is hot or they are running fevers. Gary, do you remember the details around that. It was an eye opener for me and I thought it would be good to re-post it.

http://www.fda.gov/Drugs/DrugSafety/PublicHealthAdvisories/ucm048721.htm

Probably not a good idea to wear a transdermal patch in an HBO chamber either.

The above link was in Pharmgirls thread. To find it use the search term Fentanyl, go back 2 years

The only thing any of theses did to me was get me constpated. Fentanyl , percs oxys, none of them did a thing. I have some of about anything stashed or trashed.

Heat (like in a bath, sauna, in the hot sun, can increase the rate at which the medicine is released from the fentanyl patch so that's something to be careful with.

This topic is a fear of mine. I was never on the patch but had the oxy and all sorts of other pain pills. They are very hard to come off of. After my last surgery in February the pain was so bad that those drugs were not working. My family doc actually presribed Tramadol which was awesome. It's not a narcotic but feels like one. It helped more than anythng. Unfortunatley, I still take 1 or 2 pills a day. I feel terribly guilty about this. But, when I'm not taking it I get the restless leg feeling and I can't sit at work or relax. When I pop that pill I can concentrate and feel "normal" just like Eric says. My doc said it's ok if that's all I'm taking, but I feel guilty. Not to mention the Lexapro I still take for my anxiety. I'm starting to ween off of that and that scares me.

Suzanne,
I know that I felt some anxiety when it was time to wean off of the pain meds because, quite frankly, I didn't know what to expect. It was more about the pain returning then the fear of withdrawal or addiction. Anti-anxiety meds are also addictive and require a phase out as well when it's time to quit them.

My MIL has has RLS and there are medications for that. More than likely your RLS is more of a mild symptom of withdrawal, especially if you didn't have it before your Tx.

Withdrawal, even a long phase out will have 2-3 days that you will feel a little shaky and unsettled and that is normal (a mild withdrawal should feel like taking in too much caffiene on an empty stomach). Remember that it is only for a few days, then you'll be done with it. Be sure that you discuss this with your doctor and the two of you should agree to a phase out plan.

Tramadol may be a non narcotic ("narcotic like") but it must be treated as one and has the same contraindications, risks and dangers. Many narcotics on the market today are synthetic and do not contain organic opiates (derived from Opium poppies from "morphine base"), like Morphine Sulphate or Codiene. Fentanyl is a sysnthetic narcotic.

In the words of FDR "There is nothing to fear but fear itself".

Taking meds that allow you to feel normal or cope emotionally is not something to be ashamed of. Jeez... we get diagnosed with cancer, the word alone associated with our name in the same sentence creates fear and anxiety, and this is totally appropriate as a response since it is - in so many different versions - a killer diagnosis. I was on opiates and synthetic opiates for over a year, I was on anti-depressants for two years. I was a wreck emotionally and physically, and as a "guy" this screwed with my self image, that I was being such a puss about the pain, and the physical results/the new me. But with 20/20 hindsight, and sharing so many other's experiences now over the last decade, I realize that I was pretty much like everyone else, and any self deprecation was a waste of emotional energy. For sure, there are some seriously tough people out there like Glenn who was on our boards for several years, and Colleen Pinter, who both went through Hell and didn't whine or complain once to me. But they are certainly exceptions to the experience, not the norm. While my age and previous experience with drugs (I am a child of the 60's) perhaps colors my view, I am in favor of better living through chemistry.... I see no reason to go through pain or anxiety, if you can get some assistance in dealing with it. No one has to prove to the world that they can tough it out. They just need to get to the other side of the disease process cancer free, and then begin to work on adjusting to their new self. None of this happens overnight.

When your pain subsides, and your emotional perspective balances, stepping down gradually from things under medical supervision takes time, as your body has become accustomed to the crutch. But that doesn't mean that if done gradually enough you will not be able to in a manner that does not cause you undo discomfort physically or emotionally.

I think that the thing that we see here often, and which I was part of in my process as well, is that people do not realize how much these drugs are altering your perception of things. Not that you shouldn't be angry in some way about the cards that you have been dealt, or in how this is impacting your life and world, but more how you deal with expressing that anger. I did, and others that have posted here in ways that are insensitive, sometimes are speaking through a voice that is partly them, partly the impact of the drugs. Some (like Gary has stated before about his own experience), actually go through anger management counseling to get past this. I just made everyone around me miserable with my anger and frustration. I wish that I had handled it all differently in retrospect, but I have mended fences with those whom I treated poorly, including my treating doctors, in the past.

I don't think that people should side step pharmacological assistance if it makes the process easer because of fear of the after effects of the drugs. They all wear off over time.

Thank you Gary and Brian. Both of your posts help me not feel as guilty. I wish the doctors talked more to us patients about this other stuff. Anxiety, coming off of meds...these have been hard for me. I guess that's why I see a therapist!!! She helps with these stresses..her and the wonderful people I have found here.

Has anyone ever tried St. John's Wort? Isn't that a "Natural" anti depressant?

It has been shown in actual (double-blind) studies to be effective in moderate depression but the problem is that what you can purchase otc (over-the-counter) is anybody's guess: you're trusting that what the bottle indicates it contains is actually what's in there. If one does decide to try it, one should be sure to let the pharmacist who fills your rx-s know, b/c there can be interactions. Just b/c something is "natural" doesn't make it benign.