David.

Posted , 4 users are following.

I'm trying to get off fentanyl and find the withdrawal very hard the worst being the irattable and restlessness feeling like you can't put up any longer. I'm on the 100 patch strength. How have you coped with it and how long does it take to come off 

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  • Posted

    Hi Nasher we havn't heard how you are doing with your taper for a few days. Have the withdrawals reduced any to a more bearable level. Are you getting plenty of vitamin supplements and plenty of fluids. I've been finding headaches a bit of a problem these last few days

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    • Posted

      Hi actiquser,had a terrible night of withdrawal the worst yet didn't want to be here at one time. Cold sweats bad stomach irratble beyond control. Wanted it to end, went on for hours.had shower at 3 am. Couldn't dry myself cold even with heating on. Changed patch after 42 hours eventually started to improve very slowly,no idea why this was so bad ,would pay anything for this to be never repeated.not slept not even 5 minutes,hope tonight wil be free before we near the 40 hour patch needing replacing. Any thoughts how to overcome this monster drug. Sorry about your headache one thing I haven't had but was feeling nauseous just to add to the list. 

       

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    • Posted

      Hi Nasher, sorry to hear you are in a bad place. Loperamide is good for the diarrhoea. The cold sweats are auwful, what I do is go to bed with my warmest dressing gown on and hope I stay warm. Inevitably it goes the other way with hot flashes and everything get threwn off.

      What everyone recommended to me was plenty of hot baths/shower.

      Try some herbal sleep remedies as you have nothing to loose trying them.

      I get Amitriptilline for my peripheral neuropathy and take that and it helps me sleep. I just sleep for an hour and waken due to radiotherapy damage to my bladder and bowel. I've had most my small intestine removed due to this so have issues from this anyway.

      I hope you have a better night. What dose of patch are you on now. I have that to look foreward too once I get of the Actiq

      I'm struggling with my Actiq as my body keeps wanting more.

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    • Posted

      Morning Actiquser. Had a ok day and night thanks to new patch 7.30am yesterday,I'm on 75 strength patch at the moment. Trouble is it will all repeat it self tonight. cant stay in bed and keep warm due to the severity of the anxiety and restlessness it's a vicious circle. So sad to here your awful dilemma.its bad enough going through surgery without having to cope with your after effects. Yes I think that's what my body wants is more rather than less. I'll contact you tomorrow with update on tonight's event. My dearest thoughts are with you.

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    • Posted

      Hi Nasher,

      How long have you been on the 75 strength patch?

      Yes your body will want more, I hope you have a better night and manage to get some sleep. Try not to think that it will happen again rather think your body should be getting use to a lower dose and the symptoms should not be as bad tonight. let me know how you get on .

      Warm wishes and hugs to keep you warm tonight.

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    • Posted

      Hi Actiquser,changed from 100 patch to 75 about 5 weeks ago,first couple of weeks ok then it decided it wasn't going to go the course again,been having withdrawals after 43hours. Last night I decided to change patch before symptoms started so changed patch at 40hour stage and fingers crossed no withdrawal which was great. To have them 3 times a week is very hard to cope with. Seeing doctor on Friday to request extra patches to compensate for this,hope he excepts this and issues without me having to beg. How is it with you at the moment?  

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  • Posted

    well I do well for so long, then fail miserably. When  get a new script for 14 days I use up my actiq in the first few days, then do not have enough left so only have a few for the second week instead of the full amount and suffer badly with withdrawals but thats my fault. Part of this is because I forget to change my patch and wonder I crave more Actiq. I have memory issues due to chemotherapy.

    I do hope get your extra patches tommorow. Do they do a patch exchange scheme? 

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    • Posted

      It's such a shame you find your short on patches because you had to use extra earlier on to cope. You should not have to be without after all you've been through. Not sure what patch exchange is,but I do have some unused patches of the wrong strength  I'd be happy to change.my use of changing earlier last night has worked and not had withdrawal last night which is a first. Don't know why we can't change if we start withdrawing its us that's suffering not them. Take care Nasher. 

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    • Posted

      That's great you had no withdrawal last. I hope you slept well too.

      I assumed you are in USA where some states do the patch exchange where you have to return you'r used patches to make sure that you are not selling the patches or  eating them ???

      It appears Fentanyl is the latest recreational drug being mixed with Heroin making it extremey addictive and deadly People are more aware of it since Princes death in April. It will also have a knock on effect with Drs  willingness to prescribe this drug

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    • Posted

      I'm in the Uk in Edinburgh  but anyone else I have spoken to on Actiq is in the states.

      My Dr has the problem that the actiq at the doses I'm on should only be used in terminal care . I got started on Fentanyl and Actiq when I had cancer staged at 3c and not expected to survive. Having had horrendous treatment and survived they now have an issue with my drugs especially the actiq. (Sorry I didn't die so they have a problem) fentanyl isn't a problem and Dr was quite happy to increase the dose if i stop the actiq. If I stop the actiq I want to stop the fentanyl as they are the same drug and addictive. Since I get withdrawal symptoms I am addicted to it. My problem is I will need surgery again and I am concerned with what I wil get for pain releif. I was told I would get an epidural. I have had 3 previously 2 did not work as they" fell out" and it wasn't until they removed all the dressings they beleived me that it didnt work which was a good 12 after I complained of acute pain with no releif from the epidual.

      I get pain despite the fentanyl and haven't thought what to do I just know I want off this.

      Also if I ever had an accident the normal 10mg of Morphine for pain releif is not going to touch me and I will be left in agony. No one is going to convert the dose  fentanyl to morphine and give that dose in the NHS and feel comfortable.Its something to think about.

      I take 50micg /hr patch and was taking 5,ooomicg /day sublingual on top of the patch now down at 1,600micg/day next week 1,200micg/day.

      The oral dose was horrendous 

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    • Posted

      My goodness you've def gone through the wars. To be honest I don't know what Actiq is,is it another type of fentanyl? You had your share of problems you poor thing. Yes not good drugs to try and get off. Wish I'd never heard of it. My problems started with heart failure then nureophy pains in legs and feet tried most things for pain then introduced to fentanyl which didn't help with pain at all ,so I asked to come off them that's where I am today unable and addicted to them. Good luck with your opp I'll be thinking of you take care 

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    • Posted

      Actiq is fentanyl in a lollipop stick for rapid releif an abstral is the sublingual form of fentanyl

      I got these because I can't absorb oral tablets like morphine due to having my small intestine removed. I too have neuropathy due to chemotherapy so I can sympathise with you.

      I think we are all somewhere we would rather not be due to this awfull drug. I always maintain it should only be used in pallative care for the terminally ill.

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    • Posted

      Hi Actiq user ,well done you you've done really well I'm proud of you. I think I've got the correct patch and life span at the moment. Went back to doctor and told him I could only get 40 hrs out of my 75 dose patch and he shocked me and agreed I must have got the dose right and issued me enough to last the month. Haven't had a withdrawal for 10 days now expect for a slight blip when I let the time go over by 2 hours but was my fault. I should have changed it at 4am and woke at 6 with a few signs but not too bad. I'm seeing  the pain clinic on Tuesday hoping they can help with my pain. Keep up your good work,I'll let you know how I go on. Take care. From one sufferer to another. 

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    • Posted

      Hi Nasher, how did the pain clinic go ? 

      I'm glad it was acknowledged that you metabolize the patch quicker than 72 hours. It seems a common problem I'm still waiting on my appointment Ha ha The waiting time here is about a year !!!!!

      I am 2 weeks off Actiq and have now started to tape my 50mg patch by 1/4.............sweats and lethargy. I haven't eaten for about a week and lost half a stone but managed to eat yesterday for the first time. I have been dehydrated too but trying to force myself to drink.

      I try to do some activity each day regardless of how exhausted I feel and feel better for it, then watch tv with a blanket .

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