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Hi everyone

First, please bear with me in regard to the length of this post..Ive just joined this group, and am hoping to connect with folks who've had similar experiences with fentanyl, and support as I begin the process of getting of this horrific medication. A little history- 2002, I suffered an injury to my lumbar spine, resulting in 2 herniated discs, 2004 underwent lumbar fusion with hardware. Have diagnosis of degenerative disc disease, spinal stenosis, fibromyalgia, neurogenic bladder, cauda equina syndrome, facet and sacroiliac joint disease, depression, anxiety.

About 3 yrs ago, after many failed attempts to control my pain, my pain mgmt dr prescribed Fentanyl patches, 50mcg/every 72 hrs. which I've been on since. 14 months ago, I began losing weight- ALOT of weight, without any effort on my part. I am 5'2 and 14 months ago, weighed 187 lbs.. given those stats and my back issues, in the beginning, losing weight wasnt a bad thing.. However, its not stopping.. I have now lost about 94 lbs and its still coming off. My primary doc has scanned and scoped every inch of me twice, and repeated bloodwork over and over- finding no cause for the weight loss.. so he sent me to a gastroenterologist, as beginning about 6 mos ago, I began having severe nausea and vomiting all the time, no appetite what so ever, cant tolerate the THOUGHT of food, much less eat.. the gastro doc ordered more tests, which were also normal- primary checked blood work again (all last week) also normal.. A friend told my significant other and I about how he knew others using fentanyl who also lost extreme amounts of weight very quickly, for which no medical reason was found, so at my last appt with my primary, and with my gastro we mentioned this tidbit.. we agreed if the tests didnt show anything, we would direct our attention to getting me off the fentanyl as theres just nothing left to do..

My significant other and I have been doing extensive research online about weaning off the fentanyl and I'm even more terrified.. As has been said, I dont have to check the clock on the days Im scheduled to put a new patch on, and if I'm even 5 minutes late, I am in such severe withdrawels..I am working with my primary doc, my gastroenterologist, a nutritionist/RN, and a medical health coach/care coordinator to make this as easy as possible (although I know the kind of hell I can expect despite my efforts) My primary doc and care coordinator are working very hard to convince my pain doctor to implant the spinal cord stimulator he's been talking about giving me for the last year (I'll need something to control my pain once I'm off the fentanyl or I can forget about functioning) and get him on board as a means of support in weaning me off.. My pain dr has, in the last couple of years, taken the approach of only writing scripts and giving various injections to treat pain- and if you decide, as my SO did recently, that you dont want anymore injections, he will discharge your care to their nurse practitioner - hence getting my primary doc to coax him on board.. if hes not willing to join our team, I will push to change doctors.. period.. with all due respect, a nurse practitioner cannot meet my current needs..

But, I digress.. I'm reading all the stories about folks being weaned off fentanyl and what a very time consuming process this is.. my concern is this.. with being down to less than 90 lbs, and continuing to steadily lose, do I HAVE that kind of time?? And even with measures taken to control withdrawels, can I still expect this process to be absolutely miserable, as when I am late changing my patch, and worse? I absolutely MUST get off these patches.. as I sincerely believe I wont be around to see my 17 year old daughter graduate high school this June if I dont..

Any suggestions, thoughts, ideas would be most appreciated! Thanks so much for taking the time to read this..best of luck to everyone

Regards,
Chelley

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Hello Chelley, I was wondering how you are doing? it has been a few months since you posted, I am new to this and came on here to find out if others had the same problem I did, been on the Fentanyl patch for a year and have lost so much weight there is no longer any more weight to lose. I am going through all the screenings to make sure there is nothing else going on but so far I think it is due to the patch. Did you get off of the patch? How did you do it? Are you still in a lot of pain? I am really scared of getting off of the patch but I realize that I probably have to since I am now under 100 lbs. and am 5'8". I have been trying to eat fattening foods to gain the weight but nothing is helping. I found your post and wondered how you are doing?
I really hope everything is going well for you. I had a fusion 20 years ago but in the last few years it has seperated and I am now in so much pain, the patch has made it bearable. I have always been thin but now look anorexic. If anyone else has had the same problem I would love to hear from then.
Thanks
Karol
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hi to you all

I have been looking here at the comments about this horrendous drug and my story relating to this monstrosity is sad and the two posts above answer alot of my questions.

My husband had terminal cancer and was given a year to 18 months to live in January 2010

He was put on Fentanyl patches. Imediately he became severely constipated, his mouth became very very dry, developed a metalic taste in his mouth and completely lost his appetite. On top of this he kept on becoming tolerant to the fentanyl so the dosage kept on being increased. In July he weighed 104LBs having been a 210lbs and he was 5ft 9ins. He died last month of aspiration pneumonia and was too weak to fight it. He certainly did not die of cancer.

For two or three days up to when he died he was clammy, halucinating and had shortness of breath which also coincided with the doubling of his fentanyl dose which at this point had been increased to 200 strength every 24 hours from the same every 48 hours. No, I am not joking here! Looked mightly like overdose symptoms to me when I look back on it now.

The comments of the other posts relating to the time to come off the fentanly patches would have meant even if my husband had been offered a nerve block to treat pain he would still have had to stay on the fentanyl for a long time so he may never have been free from this accursed thing.

I personally think that fenanyl patched are ethanasia population control mechanism especially for the terminally ill. Makes sense when you think about it, it paralyses your digestive system, you lose your apetite , the constipation is so servere it is beyond a joke and theres the bone dry mouth and metalic taste to contend with too. It is worse than the cancer!

The doctors as usual said that all the symptom were due to the cancer which was complete nonsense . Of course many so called cancer deaths are actually painkiller related.


By the way my husband was 39 when he died and left 3 small children.



Bernadette.
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I just came across this thread while searching for information on fentayl withdrawl. I have Crohn's disease and had a severe flare and have been on 50mcg every 72 hours for 6 months. I, too, am having a horrible time with weight. It ook my doctors 2 months to discover why I kept losing so much weight. It turned out that the Fentanyl, in combination with the stresses of being sick and of everyday life, caused my adrenal gland to cease working. It wasn't actually the Fentanyl causing my severe weight loss (about 1.5lbs a day!) but the fact that I had adrenal insufficiency. This was accompanied by dizziness, sweats, anxiety, inabillity to walk anywhere (I'd get extremely dizzy!), the thought of food making me want to cry, insomnia, etc. My doctor's put me on prednisone and within hours I felt better. Granted, I know that this may not be the case with everyone---but a simple blood test (they measure your cortisone level early in the morning before you have a chance to get up and move around too much) saved my quality of life. I even managed to gain 3 pounds the week they started the steroids---something I swore was impossible! Don't let the patch hide other symptoms---it hid my adrenal insufficiency because the symptoms happened to be similar between that and withdrawl. Your body only has so much natural cortisone, and if you are putting a lot of stress on it, you run out. So, defintely ask your doctor about the possibility.

Best wishes to everyone struggling with coming off this patch. It is a BEAST. Thank goodness for Roxycodone to help with breakthrough pain/easing withdrawl!

Cheers,
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YZGirl wrote:

Hi everyone

First, please bear with me in regard to the length of this post..Ive just joined this group, and am hoping to connect with folks who've had similar experiences with fentanyl, and support as I begin the process of getting of this horrific medication. A little history- 2002, I suffered an injury to my lumbar spine, resulting in 2 herniated discs, 2004 underwent lumbar fusion with hardware. Have diagnosis of degenerative disc disease, spinal stenosis, fibromyalgia, neurogenic bladder, cauda equina syndrome, facet and sacroiliac joint disease, depression, anxiety.

About 3 yrs ago, after many failed attempts to control my pain, my pain mgmt dr prescribed Fentanyl patches, 50mcg/every 72 hrs. which I've been on since. 14 months ago, I began losing weight- ALOT of weight, without any effort on my part. I am 5'2 and 14 months ago, weighed 187 lbs.. given those stats and my back issues, in the beginning, losing weight wasnt a bad thing.. However, its not stopping.. I have now lost about 94 lbs and its still coming off. My primary doc has scanned and scoped every inch of me twice, and repeated bloodwork over and over- finding no cause for the weight loss.. so he sent me to a gastroenterologist, as beginning about 6 mos ago, I began having severe nausea and vomiting all the time, no appetite what so ever, cant tolerate the THOUGHT of food, much less eat.. the gastro doc ordered more tests, which were also normal- primary checked blood work again (all last week) also normal.. A friend told my significant other and I about how he knew others using fentanyl who also lost extreme amounts of weight very quickly, for which no medical reason was found, so at my last appt with my primary, and with my gastro we mentioned this tidbit.. we agreed if the tests didnt show anything, we would direct our attention to getting me off the fentanyl as theres just nothing left to do..

My significant other and I have been doing extensive research online about weaning off the fentanyl and I'm even more terrified.. As has been said, I dont have to check the clock on the days Im scheduled to put a new patch on, and if I'm even 5 minutes late, I am in such severe withdrawels..I am working with my primary doc, my gastroenterologist, a nutritionist/RN, and a medical health coach/care coordinator to make this as easy as possible (although I know the kind of hell I can expect despite my efforts) My primary doc and care coordinator are working very hard to convince my pain doctor to implant the spinal cord stimulator he's been talking about giving me for the last year (I'll need something to control my pain once I'm off the fentanyl or I can forget about functioning) and get him on board as a means of support in weaning me off.. My pain dr has, in the last couple of years, taken the approach of only writing scripts and giving various injections to treat pain- and if you decide, as my SO did recently, that you dont want anymore injections, he will discharge your care to their nurse practitioner - hence getting my primary doc to coax him on board.. if hes not willing to join our team, I will push to change doctors.. period.. with all due respect, a nurse practitioner cannot meet my current needs..

But, I digress.. I'm reading all the stories about folks being weaned off fentanyl and what a very time consuming process this is.. my concern is this.. with being down to less than 90 lbs, and continuing to steadily lose, do I HAVE that kind of time?? And even with measures taken to control withdrawels, can I still expect this process to be absolutely miserable, as when I am late changing my patch, and worse? I absolutely MUST get off these patches.. as I sincerely believe I wont be around to see my 17 year old daughter graduate high school this June if I dont..

Any suggestions, thoughts, ideas would be most appreciated! Thanks so much for taking the time to read this..best of luck to everyone

Regards,
Chelley


i know how you feel im in your situation im now down to 90 lbs and very worried and scared regards you are in my prayers as i know how you feel ive got to get off of this sttuff when im late changing i feel the pain
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Hi,

I've got microscopic colitis and at the moment I am reliant on the 50mg fentanyl. I hadn't changed my patch in about 5 days as I kept forgetting and it made me feel so exhausted that all weekend I was asleep day and night.

Yesterday I finally took the patch off but rushed out the shower and out the door without a fresh fentanyl patch on.

By the time I got home in the evening I was literally in tears with the pain. I had to then rush to put the patch on. In the mean time I was taking as much oral morphine as I could, as well as paracetamol, diazepan, buscopan and last night I took 2x sleeping tablets because I had nothing else left in me to deal with this pain.

I have lost a lot of weight during my illness which comes and goes but this bout has lasted nearly 6 months now. I'm 29 years old and not the tallest person in the world so now my clothes just hang from me it's taken a lot of my confidence too. I would love to be head strong and take myself from this place and eat 6 times a day and exercise ect but when you don't fancy food and feel exhausted all the time it's so hard to make that break.

I have a pain clinic appointment in January in hope they can help me. I've also recently requested a referral to a dietician but now it's just a painful waiting game with the additional side effects of feeling withdrawn from my girlfriend and her 2 young children. Too who are all such a big part of my life and I'm starting to feel a bit like a let down.
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My husband recently withdrew from the fentanyl patch. He is doing well after about 2 months. He had gone from 195 to 107 in about a year, with the last sixty pounds dropping off quickly. After a fall at work, a pain rehab joint started him on the patches. He had been on the patch for about 6 years with no adverse effects. Then, during this last year, he has been tested for everything trying to find the cause for this weight loss. Trying to research on my own, I found that Paxil could interact with the patch, so we stopped that. No improvement. Then I read where Nucenta could interact, so that was stopped. No improvement. All that was left was the patch. He had exhausted all time at his job and lost that along with his medical insurance. Therefore, financially he had to stop the patches. He had been changing the 75mg patch every two days, so we moved the change to every three days. After several months we had stockpiled several boxes of the patches, which turned out to be a good thing because we used these to start the weaning process. These patches could be cut without any danger. So we started with halves, then thirds, then fourths. The first week off the patch was rough, but during the second week, what a change. After two months, he now weighs 162, has energy and an appetite. I truly thought it was the end for him at 107 pounds. In addition to this weight loss, there was a host of other neurological symptoms throughout these past few years that could be attributable to the patch. He had constant movement of his body. His head would jerk up and to the side, an arm would fly out, his hands were in constant motion. He got to where he couldn't drive. He couldn't remember things, he couldn't concentrate or focus on tasks. A neurologist said that he had restless leg syndrome! So, looking back over this whole ordeal, I really believe that this was brought on by the use of the patch and that maybe his body started rejecting the medication. There were no doctors who could give us any answers. I have done lots of reading on everything from starvation to dementia trying to find some answers. All I do know is that that patches were not worth what he has had to go through.

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Hi there to all you people talikng about Fentanyl !  I am searching for an answer on why my mother is loosing so much weight and iam hopping from all your posts this maybe be finaly the right anwer...  I HOPE .  Mom is on 125 mg of fentanyl and she is 80 pounds now .  They first gave it to her 1year ago cause her cancer when to herspin and she was in so much pain.  When they gave it to her she was 115- 110 one year ago and now she is 80 pounds tonight.  She does not want to eat at all and she is feeling like she is going crazy in the head. She does not want to leave her bed at all. We checked for cancer in her brain and it came back clean.  The Dr and Nurses say it could be early Dimentia .....  but after reading these posts I think it is the Fentanyl..... OMG  maybe we can fianaly get to the bottom of this.  It is her day tomorrow to change her patch from her 72 day,  so maybe she is on to hight of a dose for her 80 pound body.  I just cry cause we do not know where to go for answeres any more.  Why do the doctors not say anything ,  do they noy know ?  Any suggestions on what to give her instead of Fentanyl ?  We need to ask fast befor she dies of weight loss.  God Bless ,  Nori  

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Im having same problem.Weighed 220 and 6 ft now with fentanyl im 120 and 3 inches shorter from back surgury.Im quiting if they can give soboxene.I dont know what to do about pain with the surgury that didnt fuse
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How long did it take to lose that much weight?
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I'm having the same problem , I lost over 44 pounds . I started with 25 and went up to 75 with neck disk irreparable for the pain. I tell my pain mgmt. doc that and he say's that fentanyl does not cause weight loss. Well I know what you're saying about your daughter with me I have a daughter in 7th grade going in the 8th grade. I hope to get off the patch soon with the next visit going off gradually. The downfall is you get restless leg syndrome and that is pain worse than my neck because it gets worse at night. It causes you to have to move your feet all the time uncontrollably. Good luck. Gordon Stevens
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Dear Chelley,
I too have been on 100mcg/h patch for a little over a year after having my L2,L3 and L4 disc fused. Before the fusion I weighed 346 pounds. After about 7 months on the patch I started dropping large amounts of weight and the funny thing was I didn't do anything but lay or sit around and watch TV. My diet never changed and I did not increase any physical activity and I kept loosing weight. My pain management DR at PCA commented every time that I went in for my script that I lost weight like it was no big deal. Finally when I reached 185 pounds (that's 161 pounds in less six months) I asked my Dr if he had noticed my severe weight loss with no change in activity or diet and he fluffed it off like it was nothing. I'm now 158 pounds and my own family have said I look skeletal and expressed their severe concern about my weight. My mother also told the Dr she had me on 3 to 4,000 calories a day to try to put some weight back on me. I've had every blood test known to man an nothing is wrong except my potassium is a little low. Someone needs to look into what's happening to us as I a afraid I wont be around for Christmas and all this because of a pain management product. Do the Dr's know what's causing it and is that why the casually brush it off as many of the people at the practice that I've met while going to PCA are having the exact same problem and one of my friends from there died last week. The said he died of liver and kidney failure.

Does anyone know whats causing this and why the Dr's turn a blind eye to it like its not happening?

Very worried,
Keith

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I JUST started wearing 50mcg/hr every 72 hours 6 weeks ago and I can tell somethings wrong. I originally came online to research about the metallic taste in my mouth, which I guessed was from it and now I'm sure, but I haven't been eating either. I may need to get out before it's too late... some jeans I got last month I can't wear because they fall off me. And also I went in 2 weeks ago for severe exhaustion when I have insomnia- so sleeping 20 hours a day was insane. Finding nothing medically wrong I was sent packing with heavy steroids. I can't believe that all of this is on here- how scary. I'm only 26 and I want to function but at what expense?
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I also was in fentanyl x 2 yrs and start to loose weight too , at first the dr toldme it was because i was in a lot of stress , but when i got to 114 pds from 165 ,i knew something wrong, he put me in Elavil and stop fentinyl at once , now that im again at 150 he put me back again but will monitor my weight, i can't take pain killers will upset my stomac but the ELAVIL really help me with the withdraw, ask the dr about it, please excuse my writting errors i like to do it in spanish is more easy . Thanks
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So sorry. Just a note from a Nurse. Even though the cause of death is labeled Alzheimers for millions of people, the actual cause of death is choking, freezing, malnutrition, a fall, etc. Same with cancer. My mom most likely died of respiratory failure due to morphine plus damaged nerve pathways in the brain from a tumor. Im not applying anyhing to your husband but my mom was suffering badly, she was also terminal. There is no such thing as dying from cancer. Cancer is not a deadly virus or poison. Many people suffer from sort of a "Mass Effect" of tumors invading adjacent structures which throws off homeostasis. The body cannot complete functions that it has done with ease before causing systemic collapse in thousand possible ways. It's tough and extremely difficult to treat terminal PTs because there is a very painful progression for many and if they are not gradually increased on opiods, when a tumor suddenly hit a vital nerve rich area the PT will be in agony and strong meds could kill them when pushed . In Hospice some PTs can be on 360mg of morphine because they are gradually stepped up, and they are reacting like a first time opiod patient on 10 mg's. So knowledge is power. Aspiration is extremely common in Ca PTs because the body is in deceleration. Atropine only works for so long. But this is how they pass more often than not, it doesn't have to have to do with any specific med. Anyway, God bless you and your kids sweetheart John

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