Tapering off fentanyl.

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Yukon Mike
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Date Joined Dec 2010
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   Posted 1/3/2011 8:14 PM (GMT -6)   
I hope everyone had something to be thankful for this New Year's. Things were great at my house with lots of family and friends around.

I knew a while ago that I'd have to stop taking fentanyl due to the side effects, and so I have started tapering off from 50mgms/72 hrs at a rate of -12mgms/ 6days. I am at 24 mgms right now and today is the reduction to 12. I've been pretty sick to my stomache and stuck in bed for several days now, not able to eat much and some days sleeping a lot. I talked to my physician about this before I started and he suggested this rate of tapering, I'm just wondering if anyone out there has experienced what I'm going through and can offer advice.

I've read some absolutely horrible stories of withdrawl from this med and want to be as smart about this as I can. Just "rip it off" works good with band aids, but maybe not so good with opiods. Am I going too fast? Too slow?

My goal is to be free of the opiod pain meds, my body just can't handle them.

Mike

Yukon Mike
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Date Joined Dec 2010
Total Posts : 13
   Posted 1/4/2011 2:15 PM (GMT -6)   
Thanks Paula,

And I just read BigLucy's post below. Seems we all want to know that the suffering we endure is neccessary and will eventually end. Too bad no one can tell us though.

After an especially dreadful day yesterday (when I posted) I ate some soup late in the day and felt way better. I'm convinced I can't tell hunger from other gastric maladies anymore. I tend to "sip" food carefully because 1/2 the time it makes me sicker, but yesterday I got lucky.

I had a rough night but am feeling quite a bit better so far today, just tired. I'm going to make a break for it while I can and get out of the house to visit a friend for a while. We're having a midwinter warm spell and I want to get out and feel it.

I may still have a couple of weeks of withdrawls ahead but that also means I'm halfway there!

MIke

straydog
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   Posted 1/4/2011 3:05 PM (GMT -6)   
Mike sorry to read you are having a rough time with the Fentanyl patches. Have you contacted your dr and let him know the problems you are having with your taper, if not you need to. He can give something to help with the symptoms you are describing. It sounds like you are very sensitive to Fentanyl. You may be tapering too fast. Give your dr a call and go see him.

Take care.
Moderator Chronic Pain Forum

Tirzah
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   Posted 1/4/2011 3:24 PM (GMT -6)   
Don't know what to say except that going off fentanyl sucks. Talk to your doc about the side effects. There are meds that can help with most of them. Promethazone is great for nausea related to withdrawals. It's not really used anymore for nausea for any other reason so often people don't think of it. Also, once you quit the 12mcg patches, you can ask for Catapres patches. They are on-label for high blood pressure but are often used to manage withdrawal symptoms -- nausea, insomnia, heart palpitations, runny nose, watery eyes ... basically everything except the creepy crawly leg feeling.
Drink plenty of fluids -- chamomile tea with honey can be more soothing than water sometimes. And make sure to get lots of rest. Basically you'll feel like you have a horrible flu but the good news is that fentanyl is one of the fastest drugs to withdraw from so while the w/d's are much stronger, they also last for a much shorter period of time. If you're not keeping any food or liquids down, call your doc or get him paged. That's one of the few things that can be dangerous. Also, Gatorade can be helpful and is absorbed pretty quickly so even if you can keep it down for 20 mins. that's still going to help.

feel better soon,
frances

Yukon Mike
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Date Joined Dec 2010
Total Posts : 13
   Posted 1/5/2011 6:47 PM (GMT -6)   
Thanks for the tips Frances. I've been finding orange juice is ok, and as far as nutrition I'm not worried because luckily I carry a spare 10 lbs of butter on my butt in case prolonged fasting is required. : )

I'll see my doctor on Monday and see if he thinks I'm going too fast, but interestingly yesterday I felt really quite good. I had changed my patches at bedtime the night before but not reduced them further. After getting out for coffee in the afternoon I even ate a bit of supper with my family which is rare.

Unfortunately today is a rough one and I had several hours this morning where I couldn't even lift my head due to nausea. Sometimes all I can do is lay really still and focus on my heartbeat. I swear those stickers don't deliver the med as evenly as they say they do. For the whole time I've been on Fentanyl (5 months only) the third day typically brings nausea and the first day after I change stickers is the best for pain control and side effects. Day two is a coin toss. Its hard to say for sure because I've had such bad constipation and impaction with all the opioids I've taken in the last two and a half years, but I am really looking forward to just being in pain and not sick. I'm sure I won't feel the same on days when the pain is up there, but for right now that's how I feel.

I just have to find some other way to live with this pain without opioids.

Mike

Yukon Mike
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Date Joined Dec 2010
Total Posts : 13
   Posted 1/5/2011 10:00 PM (GMT -6)   
Call him right now?! You've never been sick in Canada have you Paula? It doesn't work that way.

Honestly, I don't think he's going to have any advice for me anyways. He had me on percocet for 21 months one time and even after complaining of nausea for months, and losing 20 lbs eating nothing but gingerbread cookies once in a while he still thought we needed to "wait and see".

I know you might think I should change doctors but realize I live in a part of Canada where lots of people don't even have a regular doctor. In order to get referred to specialists that can help I have to have an attending physician do the paperwork and this guy is eager to help, if not really helpful himself. In the North many of our doctors are new to Canada and just having a guy I can understand who isn't going to move South as soon as he can is a huge plus. We really have a hard time keeping health care professionals Up Here.

I just have to hang in there for now.

Mike

Tirzah
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   Posted 1/6/2011 11:46 AM (GMT -6)   
If you can manage it, I'd give up the coffee for a little bit. It will help with the constipation & also should make the fentanyl last a bit longer (anything that raises body temp a bit will cause it to release faster -- hot showers, the flu, caffeine -- even in the tiny amount found in decaf, etc.). There are OTC products that can also be used to help with constipation (I was on Senakot -- it worked pretty well). OJ doesn't have a lot of water in it. If you can't stand water or herbal tea, basically any of the red or pink colored fruits (except grapefruit, which interacts with fentanyl) are good for hydration.

You'll be fine waiting until Monday as long as your hr isn't totally out of control & you're able to keep down fluids (which it sounds like you are). The Catapres (clonidine) patches can't be used until you're totally off the fentanyl anyways.

Fasting + fentanyl = dangerous. If you're going to fast, wait until you've been totally off the patches for 14 days. The drug metabolizes differently when fasting/dehydrated. Trust me, having to be taken to the infusion unit for fluids and nutrition sucks way more than whatever you're going through right now. When I had to go, there were even people who were at least 50 pounds overweight who had to go. Cutting back on calories is fine, but you still need at least 1000 calories per day, unless your PM has said otherwise.

straydog
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Date Joined Feb 2003
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   Posted 1/6/2011 1:12 PM (GMT -6)   
Yukon that patches only lasting 48 hours has been an ongoing complaint of many. Also, as Frances pointed out the change in the body temperature has a great affect on the patches too.. I found that out the hard way the summer I wore them. I was outside all of the time in hot weather and getting sick as all get out every time. Naturally by day 3, I was in withdrawal and did not know why. I was taken off of them for another problem thank goodness, they sure were not for me because I was not going to stay inside because of a medication. With that being said they can be wonderful for some people. My mother wore them because of lung cancer and did beautiful on them and they handled her pain very well.

It sounds like your body does not tolerate medications well, and I understand that. i hope you are able to tolerate no meds. I just cannot imagine that ever happening to me again. Take care.
Moderator Chronic Pain Forum

Yukon Mike
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Date Joined Dec 2010
Total Posts : 13
   Posted 1/6/2011 10:16 PM (GMT -6)   
Holy cow you are knowledgable Frances! I wasn't told any of that by the two doctors that have been helping me with this. Not only have I been having a cup of caffeinated coffee once in a while, but also drinking a lot of OJ thinking I was hydrating, hanging out in the hot tub at the pool AND the steam room as often as three times a week , and due to the nausea I often eat very little ( I don't intend to fast but I have been slowly losing weight since Sept 2010) at least twice a week, then eat a lot on the day I feel better. What a mess! What a waste of time. I just found out today that we have an actual pain specialist doctor in town but my doctor has NEVER mentioned this to me in the four years we've been working on this. I get so frustrated sometimes. I gotta ask him about that on Monday.

SD, I had exactly that reaction this summer on the one nice day that was warm enough to take my shirt off. I had taken the kids by boat to a sandy spot on a big river so they could play, and I started walking and wading with the sun on my back (where I put the patches) I just kept walking and feeling better and looser and was even throwing sticks for our dog. After an hour and a half we headed home. OMG was I ever sick that night and all the next day. Mentioned it to my doc and he didn't think the sun could have done it.

People need to know this stuff! I try to keep as informed as anyone but obviously I have been not been advised correctly about this med or its delivery system, and I read everything I find.

And Paula, forgive me if my reply to you was saucy and rude. I sure never meant it to be. You seem like a sweet person and when I reread my post it just sounded edgy. Sorry about that.

Mike

straydog
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Date Joined Feb 2003
Total Posts : 16796
   Posted 1/6/2011 10:27 PM (GMT -6)   
Mike if you will read the print out inside the box of patches it tells us all of this info, sorry forget to mention this in previous post. I am bad about getting on the internet an glossing over on new meds.
Moderator Chronic Pain Forum

Yukon Mike
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Date Joined Dec 2010
Total Posts : 13
   Posted 1/7/2011 7:28 PM (GMT -6)   
Oh man, you are right. There it is in black and white. I can't believe I never read that.

I think the lesson here is no one is as responsible for my health as I am. Even if my doctor underinformed me or misinformed me it was up to me to read that sheet, and I didn't, and I have suffered for it.

It has been 13 days I've been tapering, down to 12 mgms now, and I haven't been as sick again as those first 5 days. There are times I feel worse than others, but I've been able to cut way back on laxatives already which feels great. I am sleeping a lot and feel cold most of the time, but that's no big deal. I'm thankful that I don't have to go to work feeling like this, I can't imagine someone doing that. So far pain levels have not increased as much as I expected.

Six more days and I hope to be free of this medication.

Mike

Tirzah
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Date Joined Jul 2008
Total Posts : 2317
   Posted 1/7/2011 9:18 PM (GMT -6)   
Keep in mind that the final cut from 12mcg to 0 tends to be the hardest. Maybe something to bring up at your appointment on Monday. Your doc might be able to give you a script for something to have on hand just in case.

That's great news that your pain levels aren't increasing much! Over time that should improve even more due to reversal of hyperalgesia. I got off meds once & saw full benefit at approx. 2 months after stopping them entirely. Crossing my fingers that you continue to do well.

peace,
frances

uniquelyme
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Date Joined Nov 2008
Total Posts : 1037
   Posted 1/10/2011 10:31 AM (GMT -6)   
Mike, Just wondering....are you going to stop taking pain meds all together? Or are you just coming off of the patch?

Yukon Mike
New Member


Date Joined Dec 2010
Total Posts : 13
   Posted 1/18/2011 10:24 PM (GMT -6)   
Planning to quit taking pain meds all together. In the last 2 1/2 years I've tried percocet, hydromorphone, MS contin, and fentanyl all with the same results- nausea, constipation and me stuck in bed suffering. So I guess I'm sick of feeling sick all the time. The meds weren't great at managing the pain anyways.

It is day 23 of my self directed detox and I'm feeling better each day. I have a 1/2 a 12 patch on right now (overlapped on tape) as my plan to reduce as fast as I started got sidetracked. I talked to my doctor about it and he just doesn't know how fast I should be doing this, so I'm on my own (plus you guys). Dropping 75% in 12 days was a bad idea in hindsight. I didn't need to be that sick.

Pain levels are of course increasing and I'm right back where I was when I started opioids 2 years ago - too much pain to sleep or even relax. So I don't know what my long term plan is. I am so happy to not have take laxatives anymore and have even gotten a bit of an appetite some days. When I do feel hungry mostly I crave salty, high fat, or sweet things so deep fried s&s pork fits nicely. Too bad they don't make bacon flavored ice cream.

Mike

Yukon Mike
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Date Joined Dec 2010
Total Posts : 13
   Posted 1/22/2011 1:30 PM (GMT -6)   
Today is day 28 since I started detoxing,and I took my last sticker off yesterday. So I guess I'm free of it. That was nasty.

Right now I am using hot water bottles, hot baths and showers, electric acupuncture, and massage for pain relief, as well as yoga, physio exercises at home, stretching and joint manipulation in my hips and SI's, walking outside, and some days easy swimming a bit to try to loosen me up. The swimming usually feels pretty good.

The thing is that while the exercise is good and healthy, it increases my pain so I can't go to sleep. I take 1 zopiclone pill every night but it wears off in about 5 hours. Five hours sleep is better than 4, but its not enough for me. Any ideas?

Mike

Tirzah
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Date Joined Jul 2008
Total Posts : 2317
   Posted 1/22/2011 9:41 PM (GMT -6)   
Mike,
Maybe ask your doc if you can take 2 sleeping pills at once. You can also try lavender to help with the sleep. You can use lavender blossoms or you can buy lavender pillow spray at places like Bath & Body Works. Be sure to spray it on the inside of the pillowcase so you don't cause skin problems, but other than that it works like a charm. :)

Usually the 3rd day after totally quitting fentanyl is the worst. If you can make it through the next week, you should be in the clear.

best wishes,
frances
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