Hi Urgently needing help/information for stopping Actic/Fentanyl.
I am currently on 50micg/hr Fentanyl patch and was on 8 actiq/fentanyl lozenges/day. I have reduce the dose of these and also how many currently down to 5 a day. I suffer from sweats big time and sneezing but am determined to do this. Pain is increasing but will tolerate what I can. I'm taking loperamide for the diarrhoea as many as necessary and am being supported by my Doctor and have a support worker who is seeing me weekly. I have been offered Methadone as an alternative but have declined.
Both Dr and support worker admit they have no experience of this so are trying to get someone who does have experience.
I am open to all offers of help from anyone who has done this or attempted to do this. I want to succeed and get my life back on track.
Fentanyl is so addictive.
Being on fentanyl, I tried to stop, is very hard. There are several people on here who have successfully stopped using fentanyl. I do not know if they used any aids, (I know of two who didn't use anything) but are no longer using the meds. Determination and willpower played major roles in their success from what I saw. The other people on here are absolutely amazing. I tried to stop, but I was not successful and am still on 50mcg every 48h. I wish you the best of luck and am here to help as much as I can.
Personally, I couldn't handle the withdrawals, even with using morphine as a substitute, they were too much for me while having to raise my son and being a full time student. I hope to attempt quitting soon, being a slave to medication that was supposed to help me and has only hurt me is ridiculous. I look forward to hearing about your success along the way. Please know we are all here to support you along your journey.
Hi Brandelyn,
Thanks for the quick reply. I just want off this as it is so addictive. I've been on it for over 3 years and Drs been trying to persuade me to give up Actiq for at least a year. Then out of the blue I decided myself after reading more about the drug. I know it isn't going to be easy which is why I asked for help. I had got down to 3 a day rather rapidly then slipped back to 5 so I am taking it slower as I was rushing things and really feeling the withdrawals. it's the Actiq the Dr concerned about as it gives peaks and troughs of the drug giving a high where as the patch gives a constant amount in theory. I do know when I get to day 3 of the patch I feel it isnt as strong and have more breakthrough episodes. I have devised the taper plan myself so I'm really in the dark here, thats why any help is most welcolm.
Yes I can understand how you couldn't handle the withdrawals and Morphine would barely touch you as its 50 times less potent. I have a son also and know the issues if you want to continue to function as a mother.
The reason I am determined to get off is I've survived my cancer which I was not expected to. The treatment has been horrendous and I have required several major surgeries to undo the damage from radiotherapy including having most of my small intestine removed and that brings major problems. In the future I will require more surgery and I fear that if I stay on fentanyl when I have surgery in the future and they give me post op analgesia it will do nothing due to the high dose of fentanyl and actiq I take. I am also likely to have a recurrance of my type of cancer and if i need painkillers then there will be issues too. I firmly beleive Actiq should only be for end of life situations. I am undecided about my view on the fentanyl patch. I'll decide if and when I beat this addiction or should I say tolerance I have developed through no fault on my own. I appreciate your support
Hi Im on fentanyl 125 mg patches and I change mine every 72 hours I live in the UK, so im not sure if your drugs are the same. I am also on a lot of other drugs as I have "cronic pain" and now a year on I suffer from the PHN. from the shingles, which also I know now is stress related when I am worried about things or have to attend meetings etc my pain in my side and back from PHN goes sky hi. I do find when its hot (which is not very often in the UK) when driving the heat from the window blows my paztch into over drive. If I am out in the garden the patch is attacked by the sun. I know I am on it for life as my arthritas pain shoulders/arms/hands/ and my two full replacement knees pain that makes you cry. But I do wish you well Brandelyn. stay in touch as most of us on this wonderful site do Jocelyne Mason Cambridge UK
I hope you're able to hang in there. I don't have experience but many people here do. I am preparing to taper down starting in Oct. I will watch for your posts! Good luck
I broke my back in the navy and went without surgery for 5 years. Ironically when I did have surgery (it took that long to find a surgeon that would take my case due to other health issues) I ended going in for emergency scheduled surgery. I'm so sorry you suffered with cancer, but I'm glad you have survived. I will pray for your continued remission. I agree that certain meds should be given for cancer patients only, however my case was an extremely high tolerance to opiates as to why I was even prescribed fentanyl. I ended up waking up during a heart procedure because my tolerance was so high, and that was before I was even prescribed narcotics. I wish you the best, and I hope to hear updates frequently. I'm currently searching for a new pain mgmt Dr that will help me cut down and also help me with the withdrawals I know I'm going to face. I too will end up having more surgeries on my back, I can already feel my spine weakening from the current rods and screws in place. Granted my situation is nothing like yours I do wish you the best of luck.
Hi Melissa I am currently on 4 Actiq a day and am due to reduce the dose next Friday. I have decided to stop them from tommorow and see how I manage.I have got rid of all my Actiq.
If the withdrawals are too great I will go back on the taper programme. Things are just going tooo toooo slow for me. I just feel its dragging out and I want it over and done with.
I have been offered suboxone and narcan to detox of the fentanyl patch when I decide to do that but will try and do a taper programme first.
Sitting writting this with massive sweats and diarrhoea. I just want it to stop as I'm getting it every day on the taper programme.
I will keep you updated. Still waiting to hear how Brandelyn is doing.
Wow that's rough. I'm planning to start taping on Monday. Please let's stay in touch. Let me know how things are going. I'm concerned about you just stopping altogether.
I'm doing OK. I am just now getting to half the patch being taped. I'll be starting the 25mcg patches in 72hours. And since I'm only getting 25mcg from my patches from taping them, hopefully I'll be able to start taping a bit of those patches as soon as I get them. I should be hearing from the specialist soon and I go for another ultrasound on Friday.
Same medication, just a different dosage. I'm on here, just not as often as I would like. I do plan on staying on here though. Things are just hectic. I wish all y'all the best though. And I will be on here hopefully once a week or so.
Thank you for the update Brandelyn! Thinking of you!
You are too sweet. Thank you. I hope you are doing well.
Hi, glad to hear you are well and managing your taper .
Do you use the gel filled patches? Its to get an idea for when I reduce the patches, which will not be for a while, if I succeed with the actiq. I will take a rest first. Is reducing it in half not quite hard and are you having withdrawal symptoms? I hope the scan goes well on Friday.
Yes but I still have the patch
Hi melissa how are you doing ? did you start your taper on monday. I am now day 7 of no Actiq. I went away last week so had no choice left all the Actiq behind. I'm just very tired and sweaty but other wise psychologically feel great. I will not taper the patch for a month or so.
Yes I'm doing fine so far. Today was the third taped patch and I taped just a little more tonight. Thank you so much for checking on me! I don't blame you for waiting til the Actiq is out of your system. I'm glad there's no unbearable withdrawals for either of us so far, EXCEPT for me - increase in pain. Please stay in touch. You are an inspiration to me and many others I'm sure!
Melissa
I am on the gel patches. And I highly suggest only tapering down with portions, not half. I get withdrawals every new patch and they drive me crazy. Day 1 sucks, can't sleep at all. Day 2 better than day one but still sucks. Day 3 I'm going crazy because the patch isn't helping and the withdrawals start. Day 3 and day 1 I stay miserable. I'm at 25mcg and was just able to start taping bits off. I probably tape about 1/8 to1/7 off at a time. I personally do not recommend much more than that but there are those who can handle that. I'm so glad to hear that you stopped the actiq, that couldn't have been easy. And please allow your body a break from getting off medicine. You truly are amazing.
Hi Melissa I'm glad all is well and you are managing your taper despite the increase in pain. Yes i got increased pain and. It's there most of the time only was far worse with no actiq. I still admit I think about the actiq a lot, I hope that goes soon.
What patch strength are you tapering? I have a 50.
You are keeping me going too so well done to you too.