Actiq /Fentanyl Withdrawal

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 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.

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.

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.

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

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.

How much do you tape off each time?

And please do not forget how much of an inspiration you are as well. Without you and actiquser, not only would I be incredibly, miserably lost, I also wouldn't be to the point I'm at now (down 25mcg and on my first tape from that (today will be tape 2). You both are truly amazing and I'm so grateful to have come across y'all. Thank you. <3

Thank you for your kindness.  We are all helping each other, that's for sure.  I'm only taping 1/4 inch for three patches then tape a little more.  Its not easy trying to get the same amount taped everytime.  

I'm on 100mcg every 72 hours....I have to admit I'm not familiar with Actiq at all really.  Can you explain how it works in conjunction with the Fentanyl?

Actiq is the fentanyl lollipop which is used for break through pain in cancer patients or short term in patients that need a quick blast of pain releif like doing dressing in hospital ward instead of taking patients to theatre and anaesthetising them if its an open wound and very painfull. Its effects are short and addictive. I was having  4 times the patch equivalent a day in actiq so it has a roller coaster effect of getting you high according to my Dr.

Hi melissa I forgot to say I was informed I would get rebound pain ie pain would get worse then it would improve and it has. I still get very acute episodes and then it settles. I am looking at alternatives acupuncture, caspian cream, anything as a diversion that may help with pain. I also got pain issues I've never had before and they settled themselves. Apparently its you body tricking you into trying to get more of the drug your reducing.

I hope your taper is continuing, you are doing so well and hope the withdrawal isnt too bad. If I am honest the actiq wasn't horrendous but the stomach issues are, even with 9 loperamide 3x3 till it stopped, like today. This is not a daily occurance just periodic every few days.

So have loperamide handy. Do not take the amount I do as I have to take large quantities due to short bowel syndrome. If you need them its only one at a time.

Wishing you well, you are begining to inspire me to think about tapering my patch sooner than anticipated but I'll wait to see how you go.

Hi Melissa, how is your taper going are you down to 50mcg yet, I beleive that was for mid August? if so you are doing well. what are your withdrawals like?

Nasher how is your taper going you have been quiet for a while?  I do hope you are ok. Maybe you are enjoying the british heat wave or like me sweating a lot. I still go from hot to cold.

 I am off the Actiq 2 weeks now and started my taper from the patch yesterday. 50mcg to 37.5mcg by taping 1/4 patch.

The Actiq I cold turkeyed from 2 weeks ago following a taper from a much higher dose down to 1200mcg /24 hrs and my 50 patch gives me the same 1200mcg/24hrs. I do notice withdrawals with taping the patch.

 

You are tapering FAST! 1-how's the withdrawals and 2-how's the pain?

Yes, I am almost at 50, really close enough to say yes. Today was the worst w/d yet. Shaking under the covers the ENTIRE day. Just now looking at important email only and wanted to update you. Thks for asking. It sounds like you are doing very well!

Hi Melissa,

Well Done you are doing well you are half way there.

I am so sick of withdrawal that I have taped half the patch today (50 mcg patch) so should be getting 25. I covered 1/4 of the last patch and 1/2 this new one and see my Dr tomorow and ask fo 25 patch. I just tire of withdrawals if I do it slowly. Yes I spend most of time under covers but go out and do something once a day. I have no appatite and have lost half a stone in weight. The pain is worse but it is bearable. I had one episode of really severe pain lasting about 8 hours and should have gone to hospital but didn't as do not want pain killers.

I dont know whether to slow down with the 25 mcg patch?

 

I'm having a REALLY bad detox day. I just changed my patch an hour ago but totally down to 50 now. I'm tired of the battle too but I'm not sure going to 25 in one jump is the answer my friend. Like you, I'm finding that I want to just get it over with, but I'm trying to be patient. We are going slow so we don't get any sicker than we are. I stay in bed under the covers shivering. I can't eat. My stomach is a mess. I can't wait to break free from this Fent prison. I do try to read to get my mind off of things when I can concentrate. Please keep in touch. I think you're asking for too much to go down 25 in one shot.

Melissa

Saw the Dr today and prescribed the 25 patch rather than taping a 50. I find a quick taper has less withdrawals. When I tapered the actiq I was always hot then freezing, gross diarrhoea and didn't feel good. When I stopped cold turkey from 4 a day (1200mcg fentanyl /24 HRS previously 4000mcg fentanyl/24 hrs orally) withdrawal was better and quicker such that by day 11, I taped the patch to 37.5 and on day 14 taped the patch to 25mcg. I went on a short break so I was in a different Actiq/fentanyl free enviroment and could not get access to it. I will tape the first 25 patch and see how it goes.

You are doing well if you are down to 50 from 100 thats half way there. How long are you staying at each level?

I see a drug addiction councillor weekly and Dr as and when I want. I am still waiting on my psychology support.

I am trying reiki, accupuncture, caspian cream for neuropathy, gabapentin to start, loperamide by the bucket load, 30mg codeine for when loperamide not working. Occasional diazepam for when I get upset. I've had one episode and I do not know why I was upset other than told it was withdrawal. Still waiting to see pain Dr, they are keeping an ultra low profile as always due to heavy demands on the service.

Hope your withdrawals go soon and you feel better,good luck with the taper. I'll keep in touch.

Wow you are going fast. You sure you want to go ahead with taping a 25? That's incredible. More power to you my friend. Don't be tooooo hard on yourself. Let me know how it goes.

Hi Melissa, how are the withdrawals going, are you any better.

I've got the dry patch 25 insdead of the gel one and taped half to give 12.5 and my eyes are as big as saucers (dilated pupils) so know I'm withdrawing so today will be tough and I have a lot planned lunch, and afternoon and evening meeting so will have to bear up despite withdrawals and lots of Loperamide. Don't know if I can face lunch but will try. I find if I have lots too do I manage somehow even if I stuggle.. Fortunatly evening meeting is with the drug councilllor for 1 hour and not a buisness meeting. I hope to take the patch off on Friday for good. I know it will be rough. I found a quick taper better than a slow. I never liked the dry patch as I felt it never worked for me as well as the gel patch. If i don't manage I just stick another patch on and try again!!!

Please let me know how you are ? are you still hidding in the blankets ?

I do that on the sofa and watch a 3 hour movie just to pass the time and get through this hell and it makes me fall asleep.

Good Luck and lots of warm wishes and hugs.

I find that I can't watch tv because it's almost like sensory overload while going through this. Yesterday wasn't bad. I was able to eat a peach this morning, now I just have to keep it down. Gosh you're going fast. Just know I'm cheering you on!

Melissa

PS Are you in the UK?

Hi Melissa, sorry to hear the TV gives you overload. It helps me fall asleep.

Yes I am in UK in Edinburgh

Hi Melissa, I hope the peach stayed down. I dragged myself out for lunch with friends 2 days ago and I mean drag myself, I managed some of the main then spent the next hour in the bathroom. Not pleasant but have managed small amounts since-- a few biscuits. Well today is D day and I have decided not to take the 3 day old patch off or replace it, I'm just leaving it on to trickle out the last of what's in it. I shall get out of bed and take some exercise to take my mind off things. Fingers crossed I do not put another patch on xxx The last jump is all psychological !!!

Hi Melissa, not heard from you, I hope your not like me just now....just craving fentanyl so I would feel better nothing else works today. Withdrawals dire. I just want to be normal again..... This really sucks

It really does make you crazy. My senses and anxiety are so heightened that at times I can't stand the TV on or to read! (And I'm a voracious reader). So I'm right there with you. Yesterday and today have not been as bad though, except restless legs last night - I had to take a second RLS pill and was really groggy all morning. I spoke with my wife today and she wants me to stay status quo for the next 2 wks because I have some stuff coming up that I need my wits about me. So, I may end up on 50mg for the next 2 wks. I, on the other hand want this over with although it would be nice to have a little break. I WANT to be down to AT LEAST 25 in 4 more weeks. The thing is, she's in FL at our primary residence and I'm in GA at our mountain cabin having a holiday from the heat and I'm not planning to go back until Oct 8th. I WANTED to be able to go home and tell my dr that I was done with this medicine! On the other hand though, my wife is flying up this coming weekend to see me and our dogs (yes they're with me) and one of our dogs is chronically ill and I don't want to be sick the whole time she's here. Then I promised to take my God daughter horseback riding at my cousins house just down by Atlanta. I absolutely CANNOT let her down!!! And that's just in 10 days. So that's my wife's reasoning behind the detox break. (I can't physically ride but my cousin is going to take her.) And on top of that, my cousin bought tickets for me to go to a Dale Chihuly exhibit in ATL. So, I have things I really need to be present and accounted for over the next couple of weeks, so even though I'd rather keep going, I'm obligated to this other stuff. Plus I've missed my Methatrexate shots because sometimes THEY make me sick (but usually only for 24 hrs) and I just can't handle it on top of Fent detox. So! I've gone on long enough. I really hope you're hanging in there Act. I have some very special friends in England btw. One is in Nottingham and the other is in Derbyshire. I really want to get over there if I can get physically better. I've already been to Germany, Austria, Italy and Switzerland. Next is the UK and Ireland! Alright, enough of me. Your turn!

Melissa

Gosh Melissa you have a lot going on. I too went to my holiday home to stop the oral Fentanyl and the enviroment worked well but had loads of visitors over a few days for meals which ment I didn't enjoy that as much as I would have as I couldn't eat for the withdrawals. I went 5 days totally anorexic and I have serious problems eating normally due to all my surgeries and radiotherapy.

The patch taper was super fast going down by 50% at each patch change. Coming of the last has been difficult, hence the delay in replying. 2 days lying in bed and the sofa as soon as I exert myself sweat pouring of me and the upset tummy.

Enough of that,  Dale Chihuly's glass creations are something else and so wonderfully set in their botanic enviroments so enjoy the exhibition. It will be mind blowing. You will love it. Better to enjoy all that you have organised than be like I was. I could hardly drag one foot in front of the other for the lethargy. I do not regret my rapid taper. Dr doesn't know yet I see him tommorow.

I have read more about rapid detox with suboxone where people only stay on it 10 days, but you have to be fentanyl free for 3 days befor you can take it. Since the first 3 days are the worst I question if its worth it.

Enjoy your time on vacation and enjoy all your planned activities.