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elsa
@elsa

Posts: 23
Joined: Jul 14, 2011

Questions & Comments about tapering off morphine (Kadian)

Posted by @elsa, Sun, Feb 18 4:14pm

Hi. I'm a new member of the Chronic Pain Discussion Group and I will be going through the 3-week pain rehab program in Rochester next month. Knowing that Mayo requires patients in Pain Rehab to taper off their opiates, I decided I would begin the tapering in advance, under supervision of my local pain management doctor. I was taking 60mg Kadian daily (3 times a day: in the morning, mid-afternoon and bedtime) I was also taking up to 3.5 hydrocodone per day for "breakthrough pain". My local doctor had be drop from 60mg to 40mg for 2 weeks, then from 40mg to 20mg for three weeks, and I have been off all opiates for 4 days now. Only in the last 2 days have I been experiencing the following withdrawal symptoms: 1) sleeplessness in the early morning (e.g., 4:00 am for 3.5 hours. Finally took 2 xanax to fall back asleep), 2) diarrhea 3) increased nerve pain 4) marked increase in anxiety.
When I was at 40mg daily I felt optimal. I was calmer and my pain was not as bad as when I was at 60mg!! Then when I dropped from 40 to 20mg, I began to have higher pain but I toughed it out. Four days ago, when I dropped to zero, was the first time during tapering that I developed diarrhea, high anxiety, higher pain and an inability to sleep through the night.

I wish I had waited to begin the taper till I arrived at the Pain Rehab Program because I think my local pain MD is not aware of "best practices" for tapering off opiates. It's my observation that my local Pain Clinic is still predominantly in the business of writing Rx's for opiates and does not know nearly as much about getting patients off opiates. That said, being a former university librarian, I was able to search the medical literature and came up with the following power point presentation on "Weaning Off Opiates" by David Gilcrest at UMass Healthcare: http://masspaininitiative.org/files/DGilchrist_MassPI_Spring2017.pdf
as well as this "open access" review article:
Suttner, J. et al. “Best Practices in Tapering Methods
in Patients Undergoing Opioid Therapy”. Advances in
Pharmacology and Pharmacy. 2013;1(2); 42-57.
After reviewing these sources (which, by the way, you can simply cut and paste into your web browser), I realize that I think my MD should probably have decreased the amount of Kadian I tapered as I approached lower doses. I also wish he had warned me about the diarrhea and sleeplessness in advance. These withdrawal symptoms hit on a Friday night and I'll have to wait till Monday to call my doctor and tell him what's happened. In the meantime, I'm heading to Walgreens for some Pepto Bismol and Melatonin and to speak to the pharmacist.

BTW, I haven't used any hydrocodone in 5 weeks (haven't felt any negative effects!) and I'm planning on trying low-dose naltrexone when all the opiates have washed out of my body. Overall, I'm feeling better than I would have predicted at this point and I'm really looking forward to coming to Mayo in a few weeks.

I'd welcome any insights or comments from members who've already gone through the Pain Rehab Program and tapered off their opiates. In particular, I'm wondering how long will it be till the withdrawal symptoms end? Thanks much!!

REPLY

@elsa, first, welcome to Connect and I hope you make yourself at home and keep bringing your experiences back to us. I was diagnosed with chronic pancreatitis and the primary symptom is pain in the abdomen that radiates into the back. Ladies/nurses I have spoken with who have had P, a child, and kidney stones say P is the worst. As a result, I have been on some form of opiate for 12 years and my amounts have gone up, tapered, gone up, tapered, sort of like a yo-yo. I am a backwards reactor to opiates; they pump me up and make me very hungry. When I go down, I am very tired, but the other w/d symptoms sound very familiar. You may not be symptom free for a few more days, but it sounds to me like you have done a tremendous job of reducing and getting opiate free. Immodium, rest, and any food and hydration you can stand may speed you through the last of the bad symptoms. I am not sure that once you get there, you will even feel as if you need the naltrexone. Great job and hope we hear more from you and your experience at Mayo. Gary

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

First lady I have ever heard complain about losing weight! jk, there are good ways and this is not one of them. I pray that the worst of your symptoms have at least stabilized and that the next two step downs will not be as difficult. I know how ravaging w/d symptoms are, but if you get there and it was the right thing for your body, the longer term will be so much better. The deep breathing has been a benefit for my anxiety; doesn't go away, but does give me some feeling of control over halting the horrible, unrealistic images of the future. My wife has always been the same kind of rock for me, and that is so important that there is someone(s) that have your back! Blessings and well wishes for your next two steps.

@gman007

@elsa, first, welcome to Connect and I hope you make yourself at home and keep bringing your experiences back to us. I was diagnosed with chronic pancreatitis and the primary symptom is pain in the abdomen that radiates into the back. Ladies/nurses I have spoken with who have had P, a child, and kidney stones say P is the worst. As a result, I have been on some form of opiate for 12 years and my amounts have gone up, tapered, gone up, tapered, sort of like a yo-yo. I am a backwards reactor to opiates; they pump me up and make me very hungry. When I go down, I am very tired, but the other w/d symptoms sound very familiar. You may not be symptom free for a few more days, but it sounds to me like you have done a tremendous job of reducing and getting opiate free. Immodium, rest, and any food and hydration you can stand may speed you through the last of the bad symptoms. I am not sure that once you get there, you will even feel as if you need the naltrexone. Great job and hope we hear more from you and your experience at Mayo. Gary

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Gary, thanks very much for your message! Funny, I just got back from Walgreens where I purchased Immodium and Melatonin. I spoke to the pharmacist and he said I would probably have the withdrawal symptoms for 3 or 4 more days. He thought my pain would lessen somewhat too.

I'm sorry to hear about the pain you sustain because of pancreatitis. It sounds extremely difficult to work with. I'm so impressed that you're a mentor on this discussion list and are responding to people, like me, who haven't been through Mayo's rehab program yet. Your comments give me a great deal of hope. Do you feel that your pain is well-managed at this point? I imagine the tapering up, then down, is difficult.

I have severe nerve pain stemming from a "simple" back surgery, a microdiscectomy, I had 8 years ago. During surgery the surgeon tore the membrane which surrounds the spinal cord (the"dura"). Many patients can sustain a dural tear without developing chronic pain but I also have MS, so my nervous system was already extra sensitive. In the year following surgery, the pain returned and got worse and worse. One year to date post-surgery I retired on a disability. In the 7 years since retiring from my job (I was the head of a branch library on the University of WI-Madison campus), I've experienced the "typical" downward spiral with severe neuropathic pain. First I was on gabapentin (still am, @900mg/daily), then Fentanyl, then off Fentanyl and on morphine + hydrocodone. My psychiatrist prescribed antidepressants, anti-anxiety meds, and methylphenidate to eliminate some of the opiate fog and help me focus better. At the highest levels of meds, 2 years ago, I was on 120mg Kadian daily, 2700mg. gabapentin daily, 50mg methylphenidate daily, up to 4 hydrocodone daily, plus various antidepressants and benzodiazepines for anxiety. Today I am opiate-free for 4 days, off the methylphenidate, sustaining at 900mg of gabapentin, plus effexor and sertraline for depression. Although I'm still experiencing fairly bad pain (peaking at "8" yesterday, "7" today), overall I'm thrilled to have my brain back!!! Today I was able to walk 2 blocks, and drive my car despite the pain.

My pain is located in my right buttock (sometimes the left side too), my right hamstring (sometimes the left one too) and the bottoms of both feet. It hurts to stand, walk, and sit. Because of nerve damage on the lower, backside of my body, some core muscles that normally would be firing to support my back, don't work right now. I'm greatly looking forward to working with PTs when I come for pain rehab.

Feel like I've written a novel here…. I'll close now. Thanks again for answering my post!

–Elsa

@cdcc

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

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OMG! I wouldn't have thought coming off Lyrica would create such severe withdrawal symptoms! I'm so sorry for all you've suffered! I've only had withdrawal symptoms for 2 days now, nothing like your several-month ordeal!! I hope tapering off the last 50mg is somewhat easier for you.

I'm glad you have a supportive husband to help you through the withdrawal! What I've learned from being on a whole mess of different drugs I've taken concurrently to manage pain, depression, anxiety, brain fog, is that they can turn who into a bit of a zombie. Now that I'm completely off the opiates, I feel like I finally woke up from being in the fog! I'm much less forgetful, I can actually plan tasks and execute them. It's like having "mission control" back! 🙂

BTW, I took Lyrica (a starting dose, I presume,…was 7 years ago) and I quit it after a couple days. My brain couldn't take it. Felt like I was up in the ether.

Happy that you're almost done with this journey. You're a strong woman!!

@elsa

I hadn't heard that Mayo required that those going through the pain rehab be off opioids. That seems like a kind of strange requirement. Do they give a reason for this?

Jim

@cdcc

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

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My withdrawal from Gabapentin (generic for Neurontin), the precursor drug to Lyrica developed by the same pharmaceutical company, was extremely difficult. And, my pain doctor was not helping me. I was on 900 mg and he told me to just stop taking it. Fortunately, I had read on this site about the horrible time people had withdrawing. I contacted my pharmacist and he helped me work out a schedule for withdrawing. I had a hard time, but I really wanted off, and if I went down a step too soon, I just went back up to the previous level for another week. I'm so happy to be off it. I personally think that it's a dangerous drug. I actually had less pain when I got off it.

Gail B
Volunteer Mentor

@cdcc

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

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Gail Dr.had me on Neurotin but in the first couple of nights my mouth@throat where so dry I thought I was going to choke so she stopped it

@jimhd

@elsa

I hadn't heard that Mayo required that those going through the pain rehab be off opioids. That seems like a kind of strange requirement. Do they give a reason for this?

Jim

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I was at the Mayo Clinic in November. One of my appointments was with a psychologist with the Pain Rehab Center. She told me that if I enrolled in Mayo's 3-week pain rehab program that they require that you get off your opiates and they will help you to taper off. I just stated what I was told.

@cdcc

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

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I can't find the discussion about Kratom ,but Dr.Mercola .com has a good article about this today and how the FDA is calling again for it as dangerous drug ,they want to ban it.very interesting article.

@cdcc

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

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Did you have some clearing of brain fog? Better short term memory? I recognized both in the extreme – I had been on the max dose of about 3600 mg/day.

I agree with Jim. If I were off my opiates, it would only be because my pain level had become significantly lower and then I would not need pain rehab. I know you were just repeating, but it sounds odd to me, but what do I know?

@cdcc

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

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I'm not sure to whom you're addressing your question. Are you referring to 3600mg of **gabapentin**? I assume so because I know that 3600mg is the label max for gabapentin.

I started this discussion thread about tapering off **Kadian (morphine)**. Other people are posting about getting off Lyrica and gabapentin, neither of which is an opiate. The posts are interesting and I have no objection to them, but I'm disappointed not to hear anything about tapering off opiates, and specifically, morphine.

I do very much appreciate suggestions about waiting to taper till I get to Mayo. Unfortunately, I am now on Day 6 on zero morphine. I began to experience withdrawal symptoms on Day 2 of zero morphine. By "withdrawal symptoms" I mean: wakefulness during normal sleep hours, heightened anxiety, heightened pain, diarrhea. It is the heightened pain that is most distressing.

I've been waiting more than 24 hours to receive calls back from a nurse at Mayo Pain Clinic and from my local pain doctor. What I want to know is: at this point (i.e., Six days off all opiates) can I expect the pain to still improve and how long is it likely to take? I have no objection to returning to 20 or 40mg per day of morphine but I'd really appreciate some **guidance**, particularly from any nurse at Mayo Pain Clinic, but also from my local pain MD.

–Elsa

@gman007

I agree with Jim. If I were off my opiates, it would only be because my pain level had become significantly lower and then I would not need pain rehab. I know you were just repeating, but it sounds odd to me, but what do I know?

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A nurse at Mayo told me I could begin tapering at home (before getting to the Mayo's Pain Rehab Program) if I wanted to. Seeing I have a local pain medicine MD, I thought it would make starting the Rehab program easier if I'd tapered off morphine + hydrocodone before I got to Rochester. I stopped taking 3.5 hydrocodone/day >5 weeks ago, without consequence. I dropped from 60 to 40mg and felt less pain! Pain increased again when I dropped from 40 to 20mg but I persevered. It's only now, at zero opiates, that it's gotten really hard.

@cdcc

You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think I was a heroine addict! Started coming off 300mg in Oct, tapering using the schedule I was given. I went into a month of severe diarrhea, depression anxiety panic. I am still suffering with these three. I still have to withdrawal from 50 mg starting tomorrow with decreasing to 25mg for a week then no more. I lost 28 lbs in a month down to 101 now not good, my skin is sagging, my boobies shrunk lol. I finally had to get a psychiatrist to help me with panic and anxiety. I know now why people commit suicide , I was even in the ER for dehydration and severe nausea, gagging you name it. So each morning when I awake I wonder what the day will bring me. The psychiatrist has given me a very low dose of Ativan to help. I do a lot of deep breathing, and I still cry a lot wondering how this prescription drug Lyrica could do this to me let alone anyone else trying to come off of it. I. Surprised I haven’t ended up in a mental institution sitting in a corner doing jigsaw puzzles. I. So thankful and cry I have such a loving caring husband of 48 years

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@elsa, I did post a response to tapering and discontinuing morphine (mine is/was Dilaudid which is a synthetic that the body converts into morphine. I think my original post shows just below this one. I posted about gabapentin as I did not realize my reply was in the original thread of your question about tapering off morphine. Sorry if I created any confusion.

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