Fentanyl 7 Months Off After Five Years Of Using The Patch
UpdatedJust wanted to update and touch base with anyone wanting to stop using the patch or struggling through withdrawals. I was on the Fentanyl patch, ranging from 150 mcg to 25 mcg, for five years due to a rare debilitating, extremely painful disease called Dermatomyositis. This disease causes deep skin lesions and basically eats away the muscles of your upper arms and upper thighs and hips. It prevents you from doing anything requiring raising your arms above your shoulders, It also prevents you from walking up hills, stairs, etc. It eventually affects your lungs and swallowing. This disease crosses over with SLE and Fibromyalgia. I take 16 prescription drugs including a chemo injection and a med that is given to organ transplant patients to keep my body from rejecting itself plus the typical Lupus meds. When I was first diagnosed I was in so much pain they immediately put me on a 25mg Fentanyl patch. It was like a miracle sent from heaven. I could finally get out of bed. I was able to travel, interact socially, do chores, etc. Eventually, though, the 25mcg wasn't enough. The disease progressed as did my patch dosage. I refused to go over 150mcg. Little did I know my miracle from heaven would end up being a drug from hell. Over five years, I found myself going into withdrawals over and over. I would lose one and run short. I had a box stolen while staying in a hotel. My doctor went out of town without writing my prescription. Over and over things like that happened. I had surgery and the pain relief was non existent. More and more I found myself once again in bed. Not from pain, but from lack of interest in life in general. My pain was numb but so was my libido, brain, heart, and everything else. The last time I had to go through withdrawals did it. The sweat so strong from your pores you can smell the Fentanyl, the pain, the sneezing, coughing, yawning, the horrible insomnia, the compulsion to rock, twist, bend, move. The horrible anxiety. I knew I could not continue to live life this way. So after coming very close to reaching remission in July, I decided to get off the patch. I did it slowly, tapering down, but it didn't matter. The withdrawals were along for the ride. It was three months before I actually starting feeling a little bit normal. It was five months when I finally felt like my true self again. Unfortunately, my remission did not last but I made a decision that patch would never be put back on my body until the doctors tell me I am end stage and have less than 4 months to live. I still take hydrocodone, flexeril, Klonopin, and gabapentin as needed. And Ambien and Ropinerole to help me sleep. I have now been Fentanyl free for seven months. If anyone has questions or needs support in your journey, please let me know.
This gives me so much hope! I recently (2 weeks ago) electively decided to taper off fentanyl patches. I also have Lupus, as well as a lengthy list of other chronic pain issues that tend to go hand in hand with Lupus. I was on 50mcg for a year. At one point my doctor attempted to raise my dose to 75mcg but it was too strong and I ended up removing the patch just 10 hours after applying it, deciding to remain on the 50mcg patches. I've lost an incredible amount of weight (100+ lbs) over this past year and I began to feel like the 50mcg patch was too strong (it felt exactly like the 75mcg patch did several months ago when I had attempted it). After discussing it with my doctor, he agreed on lowering my dose to 25mcg. I tolerated the taper very well (which was 2 weeks ago) but now, I feel the 25mcg patch is too strong as well. I changed it today (making it my 4th 25mcg patch) and about 8-10 hours after changing it, I became MISERABLE yet again. It feels way too strong, exactly like the 75mcg and 50mcg patches felt. I'm vomiting and want nothing more than to take this patch off and flush it and walk away from fentanyl forever! The pain it was prescribed for is more tolerable than this severe nausea and weakness. I have dropped another 15-20 lbs since my fentanyl decrease, mostly from being more active and eating healthier, but it's still a rather significant weight loss. I spoke with my pharmacist a few hours ago and he told me to apply phenegran gel to my wrist to help with the nausea and agreed that the sudden/rapid weight loss could be making the fentanyl side effects more noticeable. Now, my doctors office and pharmacy are closed...I wonder if it would be safe to just take the patch off and be done? Any advice is welcome!
@Desperate,
I don't know if your question about taking off the Fentanyl patch was directed at the original poster of this thread, due to their overwhelming amount of personal experience in the matter. But if it were me, I'd encourage you to hold off on making any abrupt decisions with completely discontinuing Fentanyl until you have a chance to speak with your doctor first for a professional opinion on the necessity for further tapering or if the symptoms can be fully managed at this point in time by other means.
I also noticed that you posted this yesterday - Have you had a chance to get in touch with your doctor's office / pharmacy today (Tuesday)?
I wish you good luck and lots of support on your journey!
@David
I actually ended up taking my patch off nearly 22 hours ago. I made sure to take my breakthrough meds during the night and was at my doctors office first thing this morning. My vitals were stable, and after monitoring for a few hours, I was permitted to leave without having to apply another patch. My doctor said it had become too strong for my body size and that I was tolerating the withdrawals very well. I'm actually feeling ok now. Much better than 24 hours ago for sure!! Thank you for your encouragement and support xo
I don't want to frighten you but there is no just taking off the patch and "being done". I tried this many times and the withdrawals are horrific. They don't even get started until about the 4th day. Nausea and vomiting can be a symptom of over dosing. Apparently your body cannot handle the drug. Try to taper as slowly as possible. Other narcotics can help with the withdrawals. I used high doses of Lyrica to get through the worse days. It made me totally goofy, like I was drunk, but it calmed the muscles and nerves and allowed me to get a bit of sleep. Stay hydrated. Take Epsom salt baths. Anti anxiety meds if you have them. You will think it is never going to end but it will. It just takes time. Let me know how things are going. I'll try to help you any way I can.
@Sid Thank you very much for responding. I definitely felt as if I was overdosing. I have narcotics and anti anxiety meds on board and am trying to keep myself hydrated as well as busy. I know this is something my body will just have to go through because I do NOT want to put another patch on. Hopefully it doesn't get too bad. I'm officially at 24 hours since removing my final patch. Xo
I've been on fentanyl for 10 yrs. I'm on 150mgs every 48 hrs. To make a long story short i started sucking on them after 6 yrs cause a friend said it will give u energy cause i had none. My hygiene got bad and I lost a lot of weight. It was amazing. Well now they run out early. After a couple of yrs I felt the same again, no energy. I suck 75mgs a day n that's so I don't get sick, but no energy again. I went through withdrawals too many times. I'm tired of my life cause for the last 3 yrs I stay in my home. I'm missing out on my family and they don't even know that I'm on them. I only go to Dr's appointments. How did u stop? Did u have meds to help? U said it took 3 months of withdrawal that totally scares me. I don't think I can do that cause I have suicidal tendencies. Do u think my Dr will put me in the nut house cause I wouldn't mind? But how do u deal with ur pains? I have chronic back problems, 3 of them, and chronic neck pain. Do u know anyone that sucked patches?
Yesssssssssssssss I needed you. I need your support in my journey. I'm a 50 yr old woman in Ontario Canada. And thank you sooooo much for your very genorous offer. I NEED YOU.PLS PLSSSS HELP ME!
Reading your story brought tears to my eyes. I have been on the patch for 14 years or so. I'm not going to bore you with the crap…many back surgeries ECT! At one time was on 200 mcg, now on 50 mcg every 2 days. The withdraw pains are worse than the physical pain and I don't know what to do. My wife HATES that Im on this horrible drug and I'm not proud of it either. We have a successful business, [believe it or not], ha ha. I WISH THERE WAS AN EASY REPAIR OF ME AND EVERYONE ELSE WHO MADE THE MISTAKE OF TAKING THIS DRUG FOR CHRONIC PAIN. I can't remember important dates..but I can damn sure know when its a doctors appt or if its time to fill my patches. Every time I think about getting off these things or my wife reminds me…I say, Ok what do I do…go into detox for months, our business will go away..then what? I wish there was a good answer!
Desperate are you female???? I'm menopausal female and found research saying that extended release, especially methadone and fentanyl mess with hormones and adrenals. I am in process of weaning off 50 every 48hrs plus cheeking the used ones. I'm changing every 4-5 days and wondering should I ask for 25 or just keep extending time on same patch till it eventually trickles away. I am out of breakthrough as the first two weeks I went without patch and used 8 breakthrough pills a day..funny thing is 8 pills a day is LESS opiates than 4 plus patch. The purpose of extended release was to avoid so many pills yet with patch we are getting more opiate in system..due to patch causing adrenal leak, my thyroid is low and I've put on 50lbs since being on patch for 1 year. Will weight fall off and thyroid get back to normal once patch is gone? I can't find conclusive studies since they stopped study of women due to it also causing false negative in UA
This follow up if my last post..I did pretty good at doing one patch a week. If course I added extra oxy to avoid withdrawal. Lucky me! My oain Doctor seemed unimpressed and said ok how about we go down to 25? I'm thinking, great! Together we'll soon find out if this was affecting adrenals, mood, libidos etc. Less than a week after my visit -the dreaded letter of dismissal arrived! Now I'm already in a panic because I'll have no extra meds while weaning off patch! I'm hoping to also just be done with it. I left my last patch on until there were blisters on the skin and it's been two days and I've not replaced it yet. The hardest part is moving about getting anything done. I've been sitting here for an hour trying to go to Post office. Now I'm ready for bed again but okay here I go.
I've been off of my Fentanyl 50mcg patch (changed every 48 hours) for almost a month now. I had been on them for about 18 months dues to chronic pain from herniated discs at L2-L3, L3-L4, L4-L5, L5-S1 (annular tears in two of those), spinal stenosis, degenerative joint disease, and now there's speculation of my right SI joint being involved. I found that the patches were not working well anymore, and frankly, I felt like a slave to the medication. I asked my primary doctor to refer me to a pain management specialist who put me on Opana ER 20mg twice daily with Percocet 10/325mg 3 times daily. I was on day 2 of my last patch at that appointment. I left the patch in place as long as I could, which ended up being about 4 days while I began taking the Opana. While I didn't get much relief pain-wise from the Opana (it is suspected I lack an enzyme to metabolize it properly) I had virtually no withdrawal symptoms. That was in large part due to the Percocet as well as having some coverage from the Opana, at least enough to keep me from being sick. I have since been switched to Nucynta 200mg ER twice daily, which has worked much better for me. I'm still not exactly where I need to be, but I'm completely off of the patch and it was a relatively flawless transition for me. Definitely not as awful as I was expecting and I feel like I'm getting my life back. The best part is that I've lost around 12 pounds already, as I had put on about 40 pounds over the last year and a half.
Getting off Fentanyl doesn't have to be a terrible experience. The best advice I can give is to find a pain management doctor who knows what they are doing and be realistic in your goals. My goal is to be functional and able to live my life while not being limited by pain. Nucynta has been good for me so far. I've heard a lot of negative things about it, but lots of positives too. It does not have euphoric effects of other typical opiates, which is a positive for me.
Good luck!
Hi! I'm a stage 4 head maxillary sinus cancer survivor for 7 years and I may be cancer free but I'm never pain free. I'm currently on 175mcg of fentanyl every 72 hours for the last year but was up to 90 mg of Oxycodone every 4 hours plus 400 mcg fentanyl every 72 hours and gabapentin as well the first year I had my cancer, surgery, and treatments. Now 7 years later I'm possibly in more pain than I started with. Well more like different types of pain in different places since the patches. I constantly get severe back, shoulder, hips, knees, feet, EVERYWHERE and severe constipation, nausea, bloating, and pressure pain like my gallbladder is going to explode. Right after I had my cancer and a few years later after an emotional time I lost 30lbs in about 3 month time frames with out trying to lose weight and got down to 115lbs before the last year when I started my reconstruction journey. Now I'm a 29 year old female who went from 145 to 115 lbs in my twenties twice with out trying and I'm still on all these strong pain meds I don't know what else I can do. I'm also getting the colonoscopy and the camera down my throat in 3 weeks to make sure that's ok. Since I get so many different stomach pains and I can literally only go to the bathroom 1-4 times a month! That my constipation is also so bad and recently an ultrasound showed I had sludge in my gallbladder.
I'm sorry if that was a bunch of rambling. I'm just in so much pain and have so much discomfort between pain, hot flashes, nausea, and all the stomach cramps plus nerve damage in my face, neck, and arm. And I've tried a lot of medications, acupuncture, massage, ice, heat, and different OTC pain creams and such so I'm looking for any new suggestions. I don't think I should lower my fentanyl at the moment only because after I finish my hyberbaric oxygen treatments I have to get my gums shaved and when they tried to rebuild my pallette and gum that my lip healed to my gum so they need to detach it and possibly try to make the roof of my mouth a litter bigger since it shrunk to small since the surgery and causes even more problems than before the last surgery which was 3/18/15. If anyone can relate to my mess and knows some things I can try let me know! Ps Is it normal to feel like you're going through withdrawal after only being about 60 hours on the patch before changing it around 72 hours? I also read a lot of other people's posts and I haven't been able to find anything good, that so many people complain about this patch so I wish I knew what to do. Pss: I literally lay in bed most days all day and lately I've only been getting around a total of 4 hours of sleep every 36 hours. I am so exhausted all the time but can never fall asleep or stay asleep. And I never ever get any feeling of feeling "high" from any of my meds no matter my weight, and good Marijuana doesn't help me sleep anymore, it only helps with my appetite sometimes :(
I really need help so I can finally be happy, my depression is so severe a lot of the time I wish I never fought the cancer in the first at the age of 22. If I would've known what was in store for me after everything I would've preferred letting the cancer take its course and not had all these surgeries on my face and neck. That being miserable and in pain so much is no way to live, that by no means do I feel like an actual survivor :(
I was suffereing from multiple illnesses. And here came a drug from heaven, Fentanyl... the worst thing that ever happened to my body. But it was the only thing that let me function. And now I tapered down from 100mcg to 25mcg and I've lost 20lbs within 1wk. Did you experience weight loss and not being able to eat? Fentanyl withdrawals are inhumane and now I wonder what was the point in getting off that s*** if I'm in a whole new illness.
I know alot of time has passed but regarding is feeling w withdrawal after 60 hours possible. YES. These companies claim its gd for 72 hrs and its not. More like 48. I see many of these people luckily had drs who got this and perscribed changing every 48 hrs. I hope time has helped and been good to u for a change.
I've been on opioids for 32yrs and Fentanyl 125mcg, oxy 10's for severe chronic pain. I would often cut my patches to reduce, and taper the dose down to 0, then slowly go back up to max for a few months. It seemed to help keep my tolerances in check. However, I got ticked off over all the flack the abusers were creating and decided to get away from Fentanyl for good this time. I used hot baths, 122 degrees, wood clamps, and music therapy to get down to 50mcg in a week. The last 6 days I went down to 12.5mcg and in two days I will return my leftovers to the pharmacy and put an end to 17yrs of Fentanyl forever. It's a tough one to quit but just turn your anger against the Fentanyl and fight to win! I put myself through many withdrawals over the years in my efforts to avoid building a tolerance but it also made it a continuous self-made hell on the way down, which took months before I would be going slowly back to full strength. Anyway, I'm ok going off it, more aches and pains but Fentanyl is an awful drug because it forces tolerance from 24/7 constantly feeding 125mcg and over time you require higher doses to achieve pain relief. Better to get away from it, especially now that it's all over the news as a highly abused opioid and a killer too! Drs, are worried and totally overreacting thus causing way too much stress & anxiety for this cat as well. So, I will be off 100% Thursday and returning my remaining patches to the pharmacy. No more Fentanyl for John. Always here to help anyone transition if I can help. You can do it and I applaud you all for even trying.
Wow! I know this was 5 years ago, but you are inspiring to me. I've been on anywhere from 100, 75, 50, 37.5, 25, and now in 12mcg. Im trying to make the transition from fentanyl to medical marijuana. (My idea, not my doc's). I'm in my 2nd week of 12mcg and I'm loosing my desire to keep fighting. The pain is astronomical. I'm really glad you were able to quit!
Re: Desperate (# 1)
I’ve never use the fentanyl patch, but I took oxycodone for years and years and years and then slowly weaned myself down so I could quit taking them. And honestly, that’s the best way to do it because you get so sick of feeling just mildly sick during the wean down process that you’re ready to just be done with it. That’s how it worked for me anyway I was planning to take 2.5 mg of oxycodone every night for a week, but I was so uncomfortable I decided not to continue to delay it and just go for it. But I know how to withdraw off instant release narcotics, I don’t know how to do it when it’s a time release thing.
Re: Sid (# 4)
Yikes that’s terrible with oxycodone the 3rd night is the worst and it gets significantly better until day 6 or 7 when I would feel totally normal again.
Re: mich (# 6)
No sucking the patches is drug abuse and when you overdose it’s going to cause problems for your doctor and every patient who sees that doctor who is not a drug abuser.
Re: Skip (# 8)
Detox shouldn’t take months.
Don’t go on suboxone or methadone because those detoxes are absolutely at least a month.
Most Recent Replies:
Re: Spyz (# 9)
No the purpose of the extended release medication is just because doctors think people can’t abuse that like they can instant release. It’s not for your benefit
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