withdrawing from fentynal

Treatment and medication
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my story (as short as possible...)

mild crohns. remicade (for severe crohns etc) -dr hoped for fast remission. nope. after 2 times remicade and 2 times humira..after 2nd time.. later- i went to take bath. felt stiff. maybe 5 minutes (?) later-i was in a pain i never knew before. like fire going through my insides and joint pain all over. i was in my later 30s by now + never had arthritis or similar. 

ultimately--ended up on fentanyl. 

dose: two 75 mcg patches (150 mcg) every other day. 

--- BUT... before fentynal.. i was on many various pain meds. stronger and stronger. but i still couldn't  function..so he finally put me on fentynal. i was scared of it.. but ended up staying on it.

i was also seeing a rheumatologist taking methylcortisone every month. 

 lastly- i was put on methotrexate. 

i was seeing drs in nyc near my parents and chaned some early-but..finally-my rheumatologist and pain dr. 

my rhematologist was NOT appy i was on 60-70(mcg?) methylcortisone

for about 4 years! he dropped it to 40. i was on it 4 more months but last 2 times (months) -i had manic attacks.. and they were scary bad. -finally i asked to get off- cold turkey. -yes. but had to keep in close touch and if i had any major symptoms-off to hospital. i got off. but ..my adrenal glad at first did not function. it took over a year to bit by bit function again. the fatigue was horrible. not even close to like being very tired. and i had more pain..but not bad..since i was on fentynal. 

off methotrexate about a year and a half (?) after i got off the methylcortisone. also on pentasa for crons..but that i think is safe. and a few other things. 

2 weeks ago is wen i found i had to get off fentynal. -i was glad..and not. 

it allows me to live my life! but..i know ..it is full of dangers. also-

my rheumatologist did extra blood tests.. -to have positive ana is to be expected.. but (one?) was a test to check for lupus. ---it was positive. -he said it is likely the crons etc .. but.. still..we need to monitor. ...anyway:

WITHDRAWAL :

so.. i take two 75 mcg fentynal patches.. my dr set te schedule..like wit many oters also having to get off it. plans for withdrawal much depended on the kind of patch..as well as ones illness...and more. 

i get off 1/4 of 1 patch every 2 weeks. 

1st lowering -i was shaking a bit.. and the dr right away said yes.. this is enough reason to put on the clonidine patch. shhakes stopped. 

yesterday.. i dropped something glass..and all te bending. etc..plus other errands that day- by night i was in some pain..and a little shaky. 

i am guessing it is just-i overdid it  but--i was only a little lower in dose.. -and before -if i did the same.. i'd feel it--but not like that..and was almost always fine te next day. yesterday..te pain was worse by nigt..and still ere in morning to even a little now. and some shakes..but less. 

... tonight i am set to take te next step in lowering. 

tonight is te nigt set to take only half of 1 of the 2 patches. .. i admit..

i am worried the more i lower.. the worse the pain will get. 

i hoped -as the dr did.. that i would be ..at least not even close to like back then. yes.. withdrawal will be hard..and get harder. 

but..i am scared of going in to the hospital.. so will do all i can to be here. 

any replies will mean a lot., 

i wrote a reply to melissa.. but also added my story too.. as i was confused about one ting w new posts.. i am new.. but also.. shaky..and - 

well. really want to read oters comments..

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too long.. want to delete.. .

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ok..it is clear i can't delete. sorry so long. feel ridiculous. 

just feeling more shaky..sould have waited. 

need to put on patch now. 

this one lowered even more. 

no more words.. just want to read. ....

<3

 

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Dear Andrea,

I want to reply in a more sensitive, thoughtful manner, but wanted to know one piece of information--- why was the decision made to take you off of the patch?

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Hi Andrea, I am a 60 year old female who was on fentanyl for over 15 years.  I am now free of this med going on two months but I came off very slowly.  Like taping an eighth of a patch per week.  I did it with shakes nor rocking nor the big D.  Most I ever experienced was the heavy fatigue.  You know like you could barely walk to bathroom.  Lived on couch and bed for almost nine months while tapering off.  It is so worth it.  Have found other ways to deal with my pain thru a great physical therapist and my blessed Lord above.  HAng in there and if it is too fast for your system talk to your doctor. Mine was so happy I wanted off that she worked with me many ways.  Keep us updated.  We support each other and it gives me much courage.  MAy you be blessed on this journey.  Susan

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Dear Andrea,  what a dreadful journey you've been on trying to get off this awful drug.  It's obviously going to take you a long time to get back to normal and the withdrawal will be just awful at times.  My story is pathetic compared with yours as I was only on fentanyl for 15 months and most of the time at a low dose.  When I realised what it was, as not one doctor had told me that it was a drug 50 times stronger than heroin, I tried to reduce the dose myself as my doctor thought I was making a fuss about nothing!  I finally got off it, but my withdrawal was horrendous and I can honestly say I've never felt so ill in my life, shaky, nauseous and worst of all insomnia...no sleep at all for days on end.  It's now day 18 and the shakes have gone but still can't sleep well, half an hour sleep, 3 hours awake, another half hour sleep, more time awake, until it's time to get up and get through the day.  I have bad back pain so getting up and going back to bed all night is painful, but I will never, ever take fentanyl again.  My problems started with colon cancer so I have a colostomy bag (no big deal) but it has spread to the bladder and I really don't look forward to having a bladder removal operation.  However, no matter what, never never never will I accept fentanyl patches again and I do fear that, even though I'm off it, it has damaged my sleep system forever.  Good luck Andrea, what you are suffering is far worse than anything I've heard and my thoughts are with you.  I do hope things go well for you, life can be so cruel at times, but stick to your withdrawal programme and I'm sure you'll get there.  God bless, Kathleen

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Hi Andrea,

I'm so sorry to hear of your awful experiences and what you're going through to get off fentanyl.

I first was put on it when I stopped walking a few years ago- my spinal consultant was saying to put loads of patches on, but I found 25mcg was more than sufficient with all the other meds I was on too. I couldn't cope with the side effects. So I reduced it about a year later to just 12mcg... Going through cold turkey was horrendous, but im glad I did... But just didn't know if I'd experience the same withdrawals coming off one patch...

My pain doc is suggesting I take tapentadol instead of a lot of the meds I'm on and instead of fentanyl.. but I've not swapped yet as I have a lot of other stuff going on and thought it best to wait til that's over...

It was only cos I forgot to replace my patch a no had had it off for 3 days that I considered coming off it all now. Yes I want to get off fentanyl completely, but it's just not the right time now,.. I will do it in a week or so when I don't have a wedding cake and my course to finish. I have put in another patch for now... Rather than going back on to tramadol too...

But I've found it useful to read what others are saying about their experiences... If I'm honest I had not realised the potency of the drug (doctors don't tell you!) so it's a good job I found this forum.

I do feel I'm lucky though having only been in a max of 25mcg... If I'd have listened to my spinal consultant I'd be on probably 3 times that!

I hope you find some way through this nightmare jungle journey... It's horrendous it really is for any of us having to take so much medication... I'm on a cocktail of other stuff too and any med is horrendous... But morphine seems to be in a league of its own. Good luck xx

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Wow Andrea you are having a very tough battle, methotrexate and all these steroids are bad enough and I am not surprised you had a manic episode. These drugs do awful things to you and now you have fentanyl withdrawal and having to cope with.

I am glad you found this forum as there are lots of lovely helpful people who have experienced fentanyl withdrawal and addiction.

I note you have to cover 1/4 your patch every 2 weeks which seems harsh and you are having withdrawal. I note Susan 56123 taped an 1/8 every week and seemed to have less withdrawal but lots of lethargy. Lethargy seems inevitable with withdrawal. Susans taper is the same as yours overall but less severe. It may be worth a try.

Taking food supplements and vitamin supplements may help as you will have absorption issues with your crohns disease. Avoiding gluten may also help as it is known to give lethargy too, even when not gluten intolerant.

Having warm baths also is recommended to help with the sweats and aches but I found havind 2 a day quite tiring, but relaxing.

I am stopping oral fentanyl and then will taper the patch. My withdrawal has not been too bad, mainly sweats and cravings. I got Amytriptiline 10mg which I take at 6pm for sleep and it helps. I don't sleep well normally due to short bowel syndrome and having being use to getting 2.5L of intravenous fliuid/ parental nutrition over 12hours overnight so I was up to the loo a lot for the last 3 years with high volume of fluid at night I was up to the loo hourly. I do feel the Amitriptiline helps both with sleep and pain but makes me eat sweet things.

Surprisingly the pain has not been a big issue.

What are you getting for pain instead of fentanyl ? Why are they making you stop fentanyl? What country are you in?

Hope this helps, less severe taper, food and vitamin addatives, avoid gluten, warm baths and lots of support from lovely individuals in this forum who will support you.

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Andrea,

So far, I've been very fortunate in that my withdrawal symptoms haven't been bad at all. I'm down from 100 to 75 and other than fatigue and shakes it hasn't been bad. I've done it over a two week period.

I have Lupus and Fibro. I'm on Methotrexate, low dose Methylpred, etc. I also have Lortab 10's for breakthrough pain, plus a host of other supportive meds (Plaquinel, etc).

It sounds like you and your dr have a good schedule. And, you seem to have a dr that is supportive and knowledgable. With that alone you are way ahead of most people.

I'm devising my own schedule.

Hang in there and let us know how you're doing. I can't wait to not be a prisoner to this drug anymore.

I look forward to hearing from you!

Melissa

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hi mjp sorry replying late. 

decision is in part tat tey are taing as many--or a? off it at te pain center (?)

but aso--i just switched over to medicaid. and i hhave to leave tis pace.. but oter places won't give fentynal. so.. i am withdrawing.. hoping i can find a way to stay at this place.. since they know me... but..i don't know.

i am scared of pan coming back.

was doing well after maybe 2 days after writing.. i know.. not much time in between my post here and now..but feels like it, 

..anyway.. yesterday.. felt some pain and ..etc ..today.. worse. 

i tae off anther 1/4 sat. (i have the patches that can be cut) 

as for your question.. isn't it best to get off this patch?

even if i could stay on it.. isn't it not good for people?

i admit.. i liked being mostly pain free.. but.. the patch is dangerous.. and we all know it. 

but.. mentioned reasons. 

and am curious to why you asked?

yout question makes me tink.. and i hope you will reply. 

.. have a dr appt today.. and 2 errands.. 

hard.. of all days. but, oh well. 

sorry.. not in good shape right now. 

thank you so much for writing ..and hope to hear from you again. 

 

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hi susan.. sorry replying late.

i did read posts here that night.. so know a bit about each

of you.. and i love that eveyone is here for each other... that is so wonderful .. i wanted to comment on a few.. but decided to let my post go thru 1st. 

I am SO happy you are off the patch. ... i did read.. but.. can;t recall ..are you on any pain meds now?

it seems many of us have lupus. 

(i have other things.. but was tested positive for lupus.. i am not sure tho.. what is what right now. 

today..not doing so well.. and have an appt u need to walk to and errands. but.. must do wat we have to. 

i can do most myself.. i live alone. my ex bf comes to see me once a week.. and has been so supportive. 

anyway.. thank you. 

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oh.. wow.. is what i am going thru so bad to all others?

..

you have been thru a lot..

my dad had colon cancer.. and -thank God his dr saved him. 

i am sorry about your bladder now too.. i guess we just learn to adapt.. 

i love life.. and care about so muc.. and want to help in so many things -even if not with money. 

so far..no nausea.. i REALLY hope to not get ..that! ..that sounds like te worst. even worse than te pain.

today is hard.. so i write just a little. to each reply. 

want to read more that as been posted since i read last.

later. today is busy.

i must admit... fentynal was the only ting that took away my pain. (almost totally) ... and i am only 1/4 of the way thru withdrawl. but more saturday. 

today worries me.. feel feverish and some pain 

i must stay positive tho! ..will be back.. 

thank you for sharing.. 

 

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thank you for words. i also am so glad to find this forum.

i find i get more answers here.

i agree it is good for us all to get off this fentynal.. but.. 

when pain is so horrific.. and nothing waa working.. i did understand them trying it. 

and-being SOOOO overly-potent.. of CRSE ..it worked.. but.. i can't imagine all the damage it does in turn. 

i am glad you were not on a "high" dose.. but..ANY dose is A LOT... and withdrawal.. is not always about ow muc we are on..and must get off. -but also what brought us to use the patch to begin with.. plays a big role.

aso..i am trying so hard to not think about-except to get info..here.. whic is ...so important.. and people are realy caring.. and i love how it everyone elps eac other as well as asks for help, 

and we learn from each other. 

i am trying to find out more about how fentynal works..  

and what changes occur etc. 

ok.. good luck to you too

hope to see all of you again. 

thank you. 

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thank you. yes.. i am curious about wat vitamins..etc., 

am taking vitamin c -powder form. already take a daily vitamin made for IBD .. also am on a clonidine patch. nothing directly for pain.. so far.. not too bad.. but today.. not good. mostly..feel feverish. hoping so much to not get the "flo-like stuff"..

i cut the patch..i know other tape.. but.. mine is the kind that is cuttable. 

i see other here also have been on high doses..or ..are on other things etc. ...

yes.. i am SO glad to have found this forum..which i can trust. 

we can learn from each other.. and be supportive. 

will be on more. sleep ..-i go to bed late.. but do sleep.

so far. 

need to be shorter..not feeling well and have to go out in about an hour.. 

right now.. just want to cry. 

but..am keeping a positive attitude. 

wish i didn't live alone ... and most people i know live at least an hour+ away. i got sick not long after i moved. i am in the US. it is good to know how you and others are doing. i am glad everyone is supportive as well as helpful. thank you. 

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oh.. so you started withdrawal. -

i am sooo glad you read a lot here first. i think i recall yur first plan to wean ...sounded scary. -doing it yourself...? doesn't your dr know?

i wish i had a breakthrough pain med. 

clondine helps.. but that is more a.. barbituate..ot similar. 

i can't tink right now.. now a good day. -ave been mostly ok .. but today.? and have to leave soon for an appt and 2 errands. it will be ..i hope ..good to walk around.. but it is so hot out there. 90s and humid. 

i related to your story...and others. 

i want to write more later.. but.. i better get ready to go soon.

tank you.. and i look forward to earing from you..and all.. as we go through tis.. or ..even ow we are doing once off. 

our diseases will still be tere. 

i have mild crons -severe-"infammatory artritis..and more" ...and was tested positive recently for lupus. i ..dont know, 

i did wonder about lupus. a lot of the pain resembled lupus most. ...will write more later.

i have learned some things.. and want to share.. 

good to share even if it ends up not being useful to others.. you knever know. and it may help ...one. 

people here are so caring and supportive. ..i already learned a lot.. and hope to share as well. 

thank you. 

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i am so grateful for the replies. 

i am more than grateful to be part of this forum.

i hope we can continue helping each oter.. as well as learn more together about not just withdrawal.. but ow it affests our diseases (or reasons we were or are on fentynal-and need to now get off) 

also..to learn about supplements and vitamins.. and for tose of us with immune disease.. to help in tat way too. I am not sure if i have lupus.. but did test positive. i a,=lso have crons ..and --wo knows.. maybe my severe ount and tendon pain is...more about luus. i dont know. my dr wants me to not worry..and says it may be the crons that caused the ana test for lupus.. to..

well..so much of autoimmune disease where white cells attack false .. oh.. too much to write now. but.. wanted to say.. they all are somewat tied together.. not te "same" ..but.. not ..well. 

it all played into why many get put on fentynal. and then..many are put on it for other reasons. but.. i do know autoimmune stuff like lupus / crohns etc etc often led to fentynal. 

as muc as i don't like or trust pain meds.. i trust bio-engineered meds less. -even to some ..like remicade..have been out awile.. tey still know.. little to nothing. we are guinea pigs in many ways. i only wis all dr were more sensitive to us who are going thru..endless meds.. being put on  and then off.. because it..is too dangerous. -but..ten.. what will appen?

i ask eac of you wit auto immune disease.. esp. lupus.. your stories.. if you wouldn't mind, 

i am doing my best to stay positive.. and not tink on tis too muc.. but.. need to be informed..as well...as in a forum with iters like you all. whether you ave autoimmunes disease or not. 

i mean... tisnis about withdrawing from fentynal... 

and it is important to keep it just tat.. but ..i tink some tak on wy on it can be of help as well. (not sure).. 

big hugs to all of you, 

have to go.  

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PS: sorry for typos.

many are due to keys on my keyboard not working well-and i have to make sure to press hard for the letter to sow up. H is worst.. but L  K  "return"  and a few more i often don't notice when it doesn't type throug..i try to edit.. but.. today..am short on time.. will do my best. ..sorry 

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Hi Andrea,  I'm also glad I found this forum as it has helped so much knowing that I wasn't suffering cold turkey alone.  I do feel that I've got through the withdrawal now and it took about three weeks.  The first week was absolute hell but I knew I had to stick at it, second week still bad, nausea, shaking and no sleep at all but by the third week I was feeling much better and sleeping a couple of hours at a time.  This is my fourth week and I'm sleeping ok, but am still taking a mild sleeping pill (lorazepam).  I hope to come off this in a couple of weeks.  The relief of being off that awful Fentanyl is wonderful and I'll never get into anything like that again, however much pain I'm in.  I do hope you can soon be free of the drug and I hope my comments have worked.  As you say doctors don't seem to care what they are leading their patients into when they give them Fentanyl but luckily we've got internet to thank for putting us wise. Good luck and kind regards, Kathleen

 

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Multi vitamins are best. Apparently when coming off fentanyl your emotions will highten so I am told by my substance abuse councillor.

I am totally off the oral fentanyl which was tapered down to the same dose as the patch and I went cold turkey on the oral but still have the patch and yesterday I spent 3 hours crying, why I do not know and feel better today. I went cold turkey due to getting sick off the protracted withdrawal with the taper programme.

I live alone too. I think I will leave the patch for a little then do a quick taper too as I got tired of the sweats going cold turkey gave less sweats .

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Hi there,

You are doing great honey, just take it one step at a time.  The shakes and the blues will go away pretty soon.  You are making a wise decision to get off the fentanyl as soon as you can, I have been on it since 1998, and am now down to 50 mcg patch every 72 hrs, was on 100 mcg patch every 48 hours for at least 10 years (probably more).  It is a mean beast, for sure.  A new pain doc told me last week that 1) back in the late 90's when they started prescribing fentanyl they did not know what they were doing and 2) it was assumed it would only be given to folks who were terminal, in other words, would die and never need to withdraw.  On that bright note, I will say that the stories here on this blog are inspirational and I have often said we are the face of fentanyl withdrawal, for any professionals who care to look.  It is honestly a brutal thing to go thru, but the bright side is never going back to it, there are other drugs that are much easier to go off of.  I was taking 240 10 mg vicodin a month and quit cold turkey with little to no symptoms, so that is a ray of hope.

I would encourage you to read all of the fentanyl discussions here and find someone you feel is like you, and reply to one of their messages, or private message them, you can do that by clicking the little envelope by their name.

Keep fighting the good fight, and be another success story, OK?

Best of everything to you,

Leigh