Fentanyl patches

[Ovarianne]

Hi Ladies, I've been taking Niraparib for three months now, but getting very bad abdominal pain. Have never liked taking painkillers so, up to now, have only taken paracetamol but they are just not strong enough. I have now been prescribed with Fentanyl patches and I must admit I'm a little apprehensive, anyone else taking these?

[Flamingobeef18]

I have used these successfully in the past.

They give a steady stream of pain killer into the blood over a few days and a therefore avoid the ups and downs of pain control.

They do take a while though to get into the system so do not work immediately and you need other pain meds in the meantime.

Good luck

Juliax

[Ovarianne in reply to Flamingobeef18]

Thank you Julia, that's reassuring. Will be starting them this evening, thanks for the advice, Anne x

[Caleda4]

Hi,

I cannot help you with fentanyl, but hope that it takes away your pain without many side effects.xx

[jtlynton]

Usually very good, just read information, very important not to get into a bath with patches on, increases the amount of Fentanyl put into body and cause overdosing.

Hope they help to control your pain, there are no extra brownie points for suffering more than you have to!

[Ovarianne in reply to jtlynton]

Hi jtlynton,

Thanks for the advice, you are right I think not seeking help for the pain, due to my stubborness, has brought me down generally.

[jtlynton in reply to Ovarianne]

Let’s hope that pain relief lifts your spirits, we need as much help as we can!

[thomas62]

Hi Ovarianne,

I have recently been on morphine patches for pain from adhesions (normal meds wouldn't touch it). They did the job really really well. They made me feel normal as pain free. Yes you need to be careful you don't get your patch wet. I was advised to place the patch on the top part of my body or arm but to change the position when putting a new patch on. I had to change it weekly. I am now off the patches and have little pain. Best wishes. Gwen

[Coldethyl in reply to thomas62]

Sorry to Jump in on another thread but has anyone given you any tips on how to deal with the adhesions? I’ve been struggling for over a year and tbh getting anyone to take it seriously beyond telling me to just take the Oramorph when it’s bad is a struggle x

[thomas62 in reply to Coldethyl]

Hi Coldethyl,

No nobody gave me any tips to deal with adhesions or to actually tell me what my pain was due to. I looked it up on the internet and then saw the dr. who agreed it was adhesions and when I told her my normal meds didn't touch the pain she prescribed the morphine patches. You can look up adhesions on the internet which gives info on what they are and how they are/can be dealt with. I did read they they can disappear spontaneously (i.e. pain gone) and when I came off the patches my pain had gone - it does come back very occasionally if I overdue it or stretch to much but they are not a problem now. You say you take Oramorph when it's bad - perhaps you should have weekly patches for a while! Hope the adhesions do improve for you. Gwen x

[Coldethyl in reply to thomas62]

I’ll mention them next oncology - I’ve been in and out of hospital with mine as I have stoma and daren’t assume it’s adhesions and not blockage - no one seems to recognise how painful it can be at times - surgery isn’t an option as they only get worse and now I’m in recurrence I doubt only an emergency would make them open me up again - I’ve had times of no issues at all but currently it’s not great so an ongoing pain patch might be the answer- thank you x

[Ovarianne in reply to Coldethyl]

I am so pleased you and Gwen brought this up, nobody has ever suggested adhesions but, having googled it, it explains my symptoms exactly! I am currently taking treatment to disperse a bowel impaction, hope it works. I took my patch off during the night after being sick a few times, may try again once my bowel is sorted as it certainly relieved the pain. I feel better just knowing what's probably causing the pain, thanks ladies,

Anne.

[thomas62 in reply to Coldethyl]

Hi again Coldethyl,

I knew my pain was not due to blockage (which I have had before) as the symptoms and areas of pain were different. And yes incredibly painful - as I said normal pain relief didn't touch it and neither did 5mg patch so my doctor increased it to 10mg which was fine. And yes you cannot take risks re any potential blockage. Good Luck Gwen x

[Ovarianne]

Hi Gwen,

Thanks, nice to hear from someone with experience of patches, one thing I was worried about was the ability to come off them in the future, but it seems this was unfounded.

Anne

[thomas62 in reply to Ovarianne]

Hi Anne, I was on the patches 10mg for about 4 months. I just didn't replace the patch at some point and found I was more or less ok and with no after effects. Sometimes I get twinges but it's generally when I over exert myself or stretch/twist my body. You can some info on adhesions on the internet - I read they can just go spontaneously which I think is what has happened with me. If you come off then and the pain returns you can just go back on that patches but if you do this don't give up your prescription until you know you don't need the patches. Best wishes. Gwen

[UnitedKingdom]

Hello there I started taking a very small dose of fentanyl patches a

three days ago and it has transformed me. I couldn’t tolerate the side-effects of some of the drugs that I was offered and didn’t feel they really helped. I have taken pregabalin Oramorph codeine and various Anti-inflammatories and antidepressants.

I came off everything bar Indomethacin and Paracetamol. But I was getting more anxious and and snappy and my mobility was ridiculous.

I called my GP totally at my wits end and he suggested we tried fentanyl patches, the advantages are a steady slow release.

My cardiologist advised he was happy for me to try them so I felt confident in trying them.

I anxious about the news stories around fentanyl in general but as long as I follow the instructions and keep talking with my GP I am happy to continue.

I am very conscious about the use of opiates and other gabba drugs so I was nervous about fentanyl but I followed the instructions to the the letter.

I did experience some brain fog and nausea after about 24 hours which is normal And disappeared within hours. And nothing since.

The next day I was off my crutches and moving so freely with none of the normal side effects I would normally have. My partner said it was like having the old me back.

Today is day three and I acknowledge I am new to this medication and everyone is different but like you I was stubborn due to previous bad experiences But I did not know how the pain was effecting my whole life.

My pain was giving me so much anxiety I could barely breath.

I am a massive fan of headspace and have used this to help as well over the last two years.

As I mentioned it’s early days. But I feel the best I have done in years and I am so grateful that my GP really listened to me.

Good luck I hope you are having a similar experience.

[Ovarianne in reply to UnitedKingdom]

That sounds really positive with a rapid improvement. I was diagnosed 5 years ago and have been positive throughout but this pain has changed me completely. Your experience has given me hope, I put my first patch on 8pm yesterday and started feeling woozy about noon today, hopefully it will pass as my body gets used to it.

Hope your positive experience continues, Anne.

[bluepeterella]

I had quite a bad time with fentanyl after my debulking surgery (not sure what dose I was given, sorry). It made me feel awful, I had panic attacks and horrible sensory issues - freezing one minute, boiling the next, couldn't tolerate covers on me etc. The medical staff were quite slow to accept that it was to do with the fentanyl and I had to convince them I am not normally like that! Apparently it's not a common response.

I am also intolerant of morphine so am not the most reliable of subjects on this matter! But just to warn you in case you have a similar experience. All best wishes x

[Ovarianne in reply to bluepeterella]

Thanks for the heads up, what an experience for you, debunking surgery is bad enough without that on top! I guess it affects us all differently, we'll see what the next few days bring. On a positive note, I have a very good paliative care nurse who is monitoring my progress and will understand any issues I have.

Best wishes, Anne x

[Rabs550]

Hi I just wonder are you now on fentanyl and has it made a difference love to hear ur feedback xx

[Ovarianne in reply to Rabs550]

Hi, don't know why I was so hesitant, it has been a great success. I had slight nausea the first two days and was also quite sleepy but since then I haven't looked back. I started on 12mg, then increased to 25mg. The beauty of the slow release is that you don't get any pain in that spell when one tablet is wearing off and the next hasn't kicked in. I would recommend it.

[Rabs550]

First of all nice to meet you 😊and 2nd I'm glad it worked for you I texted you the other day because you said you was confused and today you replied back. It helped you I'm glad I was going to say if your not taking them please 🙏 start taking them as I've been taking since 2017 and I would never stop them may I ask you Is ur pain completely gone and wat are ur health conditions xx ❤️

[Ayupduck]

Hi hope you have found a good pain relief I have just come off Fentanyl patches for 20 years it’s not the easiest