My Butrans withdrawal battle

Hello,

I haven't been on here in a long time and usually post in Fibro and Depression forums but, having done a search, found more posts about Butrans here.

I was taking 10-30 mg of Percocet a day for my Fibro, depending on the number of days I had been working. I work 12 hr days and once a month do 6 straight, monitoring computer systems. By the 4th day, I might be taking 2 or 5 pills - it just depended on the work load.

I managed to control the withdrawal by weaning myself slowly by simply reducing my daily intake. i.e - on my 1st day off, I'd only take 1 or 2 pills. Even at that, there were times the withdrawal was painful. BTW, my Doctor was and always is fully aware of me managing my pain. She knows that I will use herbs in place of pills if I'm not working.

That said, when I approached her about changing to something not as brutal she suggested the Butrans patch. Because of my 'normal' level of pain meds we started with a 10 mcg patch. It seemed to help but not entirely so we added another 5 mcg patch for 15 weekly.

This was about 5 months ago and I have enjoyed mostly pain free days but do have some low dose codeine for break-through pain.

Here's the real kicker and the reason I felt I should share my experience.

My doctor went on vacation 2 weeks ago with out telling me. It has now been exactly 15 days since I ran out of Butrans and the withdrawal has been by far the worst experience I've ever had with any drug. I have lost 8 lbs (I only weighed 156 to start), can't eat or concentrate - crucial to my job - so I have been off work. When I am able to get to sleep, I have the most extremely disturbing dreams that leave me frightened and anxious all the next day. To the point that I don't even want to try going back to sleep.

I have RLS already but this turns trying to sleep into a GD river dance chorus.
I suffer temperature swings, cold sweats, diarrhoea, intestinal agitation (like constant butterflies but very nearly painful). Also, being Bipolar, my moods have been mostly quite dark, filled with feelings of total isolation and loneliness. My energy level has also been in the basement - putting dishes in the dishwasher wore me out. I went to work this morning for 7 am and lasted only 3 hrs. I've tried taking short bike rides (I usually ride 15-25 kms per week) of 1 km and that is a chore.

All these symptoms have been constant over the past 15 days, though some have finally abated, while others might be lessening. If I had ANY idea that withdrawal from Butrans was like this,I never would have changed. At least with the Percocet I could MANAGE the withdrawal, which was NEVER anything like this.

I will be changing back when my Doc returns in another 4 days. Until then, I don't know anything that really helps relieve this and I have tried, showers, baths, herb (helps a bit), Amitriptyline (also helps a bit), different foods...fluids..

Anyhow, the reason I wrote this is not to engender sympathy or even necessarily responses but to chronicle what it can be like in a pinch. Personally, I have had my full experience with this drug. I hope this might help others.

Brian

Post Edited (BrianJ (bne)) : 7/22/2016 7:03:32 PM (GMT-6)

Karen,

thanks for sharing your experience with me. I knew I wasn't the only one but when I searched here for a similar case and found none, I felt I had to share this. It just seemed the information I was seeking wasn't quite there so.....here it is.

I appreciate your kind words as well Karen and I can assure you that at 56 nothing shames me - I know I said I felt isolated and alone but that is the result of other recent life changes. It was not shame by any stretch.

So many of us have been put through so much with the myriad drugs we've endured over many years, trying for the best fit, that we all know ourselves at our worst. That is nothing to ever feel ashamed about.

No one is perfect but, in all the world, no one is better at being me than ME.

I thank you again Karen - I hope this dialogue helps others as well.

Brian

Well if your search turned up the ungodly death by withdrawal syndrome you had to have found mine. I actually used butrans to lessen the months and months of agony getting off years and years of low dose methadone,then had to come off the butrans! What a rollercoaster to hell that was. Unfortunately I don't think that drs warn us because I don't think they could even vaguely imagine the horror of some of these meds and their withdrawal capabilities.

Like Karen a few times of trying alone to get off methadone I landed in ICU with dangerously low potassium from dehydration and dangerously high blood pressure. Many health care professionals buy into the mantra that opiate withdrawal won't kill you but that's a crock of bull too. If it doesn't get you from medical events it will get you by suicidal tendency being increased. There's absolutely no data on how many suicides are contributed to withdrawal from drugs,increased pain levels that are relentless and the many other things that come with chronic pain that some just can't tolerate anylonger.

My doctor was onboard and attempted every trick we could think of to eliminate if not alleviate the symptoms of methadone then butrans withdrawal. Everything you mentioned helped some,nothing great. I was on clonidine patch which was really the only thing that took away the GI problems,clenching stomach and nausea. Also controlled somewhat the temperature changes. Imodium at highest maximum dosing,melatonin for sleep and it helped a little bit with rls but there were still 9 straight days early out I never slept more than 5 minutes or even sat still. Anything he tried such as benzodiazepines,muscle relaxers,sleeping meds just exaggerated the rls and insomnia.

I got off butrans fairly easily by being switched to subutext and lowering that dose as I went slowly onto hydrocodone then eventually to morphine. I'm still on a very very low dose of LA morphine with no b/t by choice. I am far too old to get through another withdrawal episode of that caliber.

I feel for you and I can't understand why the Dr would leave with patients who were going to run out of meds. They know who they have on what and when those meds were last written especially something scheduled not Prn. Did he not leave another Dr overseeing patients in the event of a problem such as this or hospitalization? Thats his error if he did not and certainly NOT proper patient care.

I hope that you will find relief soon and he can explain adequately how he failed to deliver continued patient care.

Thank you all for posting. I will definitely request the blood work suggested and, believe me, I am going to let her know precisely how I feel about her having left me 'high & dry'.

Today is the first day I woke without feeling like death warmed over and fully understand - thanks to you folks - just how potentially dangerous a situation I've been in.

I never had any self harm thoughts but was definitely way too far down the rabbit hole. I am fortunate in that my pain can be managed with Percocet without my having to hold to a strict 'mandatory' daily intake. The worst withdrawal I ever had with that only lasted a day or two.

I was quite frightened to realise I had so much of this substance in my system that it would take over 2 weeks to wear off.

Seashell, thank you very much for all the information - understanding what these substances actually do makes it much easier to direct my Doctor. I know they are supposed to understand the dangers/side effects of what they prescribe but, as nvrthesame98 said, they have NO idea of what the actual reactions can be.....just no concept whatsoever.

I slept well last night after an hour or so of flipping around and awoke with an actual feeling of hunger in my belly! Everything seems to have finally balanced out, although I am still quite weak. I have today to recover my strength as I have to ride my bike 16 km tomorrow morning to work - no busses till after 09:15 and I start at 07:00.

Anyhow, I'm better than I was and I can do anything I put effort into. At least I know now that I am not, in fact, dying - it surely felt like it last week.

Thank you all again. Your words have really been helpful.

Brian