1. < Chronic Pain

Questions & Comments about tapering off morphine (Kadian)

Posted by elsa @elsa, Feb 18, 2018

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!!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

kayv | @kayv | Feb 25, 2018
In reply to @cdcc "You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think..." + (show)
@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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Is there a place to talk to people that have psyoriatic arthritis as I do and know little about it?

REPLY
elsa | @elsa | Feb 25, 2018
In reply to @gailb "I am a Volunteer Mentor and not a medical professional. I posted this on another page..." + (show)
@gailb

I am a Volunteer Mentor and not a medical professional. I posted this on another page her, but after reading your comments, I have copied my comments to this page. I hope they are helpful in some way.

As an older adult (68 yrs.old at the time) I was put on several pain medications for chronic back pain that became acute pain in October, 2016. I am already taking Citalopram (SSRI) to which my pain doctor added Gabapentin, Baclofen, and Tramadol. I was also given a prescription for Valium to take before my back surgery in December, 2016. I continued to take these medications until I was beginning to feel better as a result of a new physical therapy I was trying called Active Release Technique (ART). When I told my pain doctor I wanted to stop taking the Gabapentin (600-900 mg/day), he seemed to be mad at me and asked me why. I told him I didn't like the way I felt on it, couldn't think straight and was losing large chunks of memory. (In fact, I thought I was getting Alzheimers it was so bad.) When he said I could just stop taking it, I said I had read that you can have withdrawal symptoms if you just stop it. He laughed at me and said impossible. Then I got a lecture on what was "withdrawal" and that I could only have that from opiods, not Gabapentin. However, I had read on Mayo Connect about the problems withdrawal from Gabapentin caused people. I then called my pharmacist who gave me a withdrawal schedule and confirmed that it was difficult to withdraw from. I successfully withdrew over 2-3 months time. I also withdrew from Baclofen at the same time toward the end of the 3 months. I discovered that my pain improved as I withdrew from the Gabapentin.

I was still taking Tramadol 50mg 4x day until November, 2017. I talked to the pain doctor about withdrawing from it as well, and he encouraged me to do that. It was much harder do withdraw from, and I still have some issues that I attribute to withdrawal. It has taken me 3 months to get off the Tramadol. I found that CBD Living Water and drops helped with my anxiety during withdrawl at the beginning. CBD is from marijuana and is the part of the plant that doesn't make you high. It helped me relax and relieved anxiety. I no longer use it. My pain doctor cut the number of pills in my prescription to 3 a day, and I began cutting those in half as I was going down in dose. I just got a refill of Tramadol and asked the doctor's office to only give me 30 pills as I would only need them now if I have acute pain, which happens only occasionally if I overdo it. However, they gave me the 90 pills again. If I was still feeling addicted to Tramadol this would have been a detrimental thing for me. Fortunately, I have just put the pills away and will not take any unless I really feel pain. Even then, I will only take 1/2 a pill.

It is hard to believe that pain doctors, especially, don't want you to get off drugs. Knowing what I know about Gabapentin now after taking it, I would recommend anyone taking it to withdraw, but that is only my experience. Others may find great help with it. What I have learned is to pay attention to my body, and if I think there is a problem with what my doctor tells me, find another source to investigate the information. I have successfully withdrawn from my medications, but I wasn't taking them for many years.

I recommend that anyone withdrawing from opiods/benzos talk with your doctor, but also with your pharmacist about what they recommend as a withdrawal schedule. If you are having withdrawal symptoms that are too much, go back to your previous dose, and take it slower. None of these drugs is easy to get off,and it takes a long time to do so. Take as long as you need, many months, and cut your doses in half or by quarters to help you with the slow withdrawal. By all means I recommend from my experience, try CBD to help with the anxiety you will feel. It is not addictive and if it's legal in your state, I found it very helpful.

I agree with you that in their efforts to find a way to help relieve pain, doctors have gone to the extreme in prescribing opiods as an easy "fix". I watched my older brothers go from light use to morphine and oxycontin, and now methadone in the pain doctor world. We have genetic back disease, but just treating the pain with medications isn't where things should stop. My discovery of ART has relieved my pain almost completely. I have pain but it is bearable, and if needed I take Tylenol first (following instructions), and that usually works. My youngest brother has gotten off oxy after many years of taking all kinds of drugs for pain. He had back surgery fusing two disks 2.5 years ago and though he still has pain, it's reduced and he's living with it.

I think we've all, including doctors, been misled about opoids and benzoprines. Money is a strong driver of corporate actions, and I believe that is the case here. I know to listen to my body and be very careful what I put in it. Doctors, pharmaceutical companies, and pharmacists are human beings. As such they make mistakes. In my opinion, our mistake can be listening to their advice at the expense of our own intuition about our bodies. They do the best they can,and I must do the best for myself as well.

How have you been handling your family member's withdrawal symptoms now?
Have you spoken to any pharmacists about helping with the schedule of withdrawal?
Please let us know where things are with them and with you. Thank you for sharing your thoughts and frustrations with us. I hope my experience is helpful.

Warm regards,
Gail B
Volunteer Mentor

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Gail, I think your arguments, especially for tapering off, not only with the help of one's MD, but also with help from a **pharmacist** are right on. As you point out, pain doctors have been long been trained, with lots of "encouragement" from Big Pharma, to prescribe opiates for chronic pain. I believe that only relatively recently, medical research has proven that opiates over time, not only lose its efficacy, but actually can **contribute** to chronic pain. As a person who's taken opiates for 8 years and is now off of them (it's been 11 days at zero opiates), -- I don't feel any worse and on some days, I am able to be more active than when I was taking the opiates!!

My observation is that the "average "U.S.pain & rehabilitation clinic is predominantly in the practice of *prescribing* opiates and has not yet evolved to widely incorporate getting people to taper down, if not off, the opiates. (this has been corroborated by pharmacists, pain psychologists, physical therapists and MDs, I've spoken to here in Madison, WI). Currently, I believe a patient has to go to an avant guarde clinic, like Mayo, to find specialists who are really at the cutting edge of tapering people off their opiates.

REPLY
elsa | @elsa | Feb 25, 2018
In reply to @cdcc "You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think..." + (show)
@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

Jump to this post

I think it's a great idea to ask your neurologist about your nerve problems! It sounds like nerve pain, so a neurologist can order the appropriate test to figure our if, and to what extent, your nerves may be damaged. Good luck and getting some answers! As far as your question about an apparatus the keeps your sheets & blankets raised up, I don't use one, however I found several sources by googling "apparatus lift blankets" and found several sources. One of them is this one by Miles Kimball: https://www.mileskimball.com/buy-sheet-and-blanket-support-310583 They call it a "sheet and blanket support". The guy on this group who uses one is: @jimhd so you might want to address your question to him. All best,
Elsa

REPLY
kayv | @kayv | Feb 25, 2018
In reply to @cdcc "You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think..." + (show)
@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

Jump to this post

Thank you Elsa for the information and support.

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 25, 2018
In reply to @cdcc "You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think..." + (show)
@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

Jump to this post

Hi, @kayv -- what I'd suggest is going here, http://mayocl.in/2CitOUd, to our Autoimmune Diseases group, and starting a new discussion on psoriatic arthritis. I'd be happy to invite some other members to join in.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 25, 2018
In reply to @cdcc "You sound like me coming off Lyrica: my withdrawal symptoms were so severe you would think..." + (show)
@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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@kayv

My feet hurt wherever I rest them on the bed or a footstool, and where the bedding touches my feet. The worst pain I have is in the balls of my feet and my toes. I have numbness and pins and needles in my feet and legs, as well. It's a burning pain.

Thanks to the spinal cord stimulator implant I had last year, my feet hurt less than they used to.

It would seem to be worthwhile talking to your neurologist about what's happening.

Jim

REPLY
Texas Freedom | @oregongirl | Mar 3, 2018

Worst thing I ever came off of.. morphine. The pain from withdrawal is a killer
Three nights in a row in ambulance to ER
Ended up with very sick gall bladder and emergency surgery. My gut was filled with poison. Three weeks of my life I do not remember and never want to go thru again. But it's over. The Dr in er did not receive another Dr had prescribed the med. I hate that this is on my record.

REPLY
lioness | @lioness | Mar 3, 2018

How horrible but my experience wasn't that bad and I only had it after I fractured my back they gave it to me in ER never again I was a zombie.horrible medicine

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