My experience on Fentanyl (a blog post)

[katwilson04]

I've seen a few people asking for advice on Fentanyl patches. And while they might work for some, they don't always work for others. These patches are a strong opioid patch and if not careful you can become addicted without knowing - so with that in mind, here is a link to my blog post where I share my experience.

wp.me/p5VgTs-fc

[janh]

How awful for you. I'm super careful too on all tablets. I managed on paracetamol, but have to take high steroids which has even worse permanent side effects. I now have a shattered spine and vertebrae that now spontaneously fracture. I have to use fencino patches, (a type of morphine). they work on the spine pain but do not work on any other pain. I still use paracetamol with caffeine but also use lidocaine patches if necessary and 10% ibuprofen gel. It all helps but the last fracture has caused damage and that pain is dreadful. The osteopath is helping. The hospital prescribed another painkiller but it's contraindications all apply to me, but it also says can cause suicidal thoughts. Last thing I want added especially on a bad day. I'd like a miracle tablet, but I don't think it's been invented yet. Everything has side effects and you end up taking more meds to get rid of the others side effects. It's a nightmare. Good luck, if you find something that works please let us all know. Xxxxx 😯

[katwilson04 in reply to janh]

Yikes!! That sounds blinkin painful!! Are they going to do anything to help you?

I too have the lidocaine patches, they didn't use to work, but have found they work really well after my 2nd surgery, I actually know when I've taken them off because the pain comes back with vengeance!

Xxx

[janh in reply to katwilson04]

In hospital now as my BP went to 245/125. No sleep of course as it's sit o bloody noisy but as I felt so ill I'm glad I'm here. I've had a pain killing injectionand the staff are lovely but night turns into day. The lights went on before 6am. I'm hoping to get some answers about the high levels of pain but it is the weekend. I'll let you know. Have a lovely Sunday and enjoy one for me too. The cougher, the whiner the shouter the screamer are still at it. Wish me luck. Xxx

[katwilson04 in reply to janh]

Oh no! What happened that you are in hospital! Is everything ok?! Good luck indeed!! Xx

[deejames]

My experience on Fentanyl ranks with the major traumas of my life. It is a horrible blur but I kept a sort of diary that reads as a inchorherent babble of fear, anxiety and confusion .

I still get flashbacks from smells food and sounds associated with that time. Yet a relation has used it for years successfully.

Dee

[katwilson04 in reply to deejames]

Dee - glad you said that, i often get smells and tastes in my mouth from things. The one I often get is the taste of anaesthetic!

[Lizbett]

I used them but was a babbling mess. I couldn't think .... . They did help with pain but the side effects were untenable.

The singer Prince died as a result of using too much Fentanyl at one.

[katwilson04 in reply to Lizbett]

Yep! I was the same, I seemed to have lost my ability to function as a human being!

[Rosepetal60]

After bad side effect on Alendronic acid lasting 10 months after only 2 doses for osteoporosis, I never take more than 2 doses of anything now unless it is helping with my pain. Fentanyl did not help my pain

[katwilson04 in reply to Rosepetal60]

It didn't help my pain either. I kinda do the same, so wary of what I take now!

[deejames in reply to Rosepetal60]

Fentanyl did help my pain. It was the least painful periods of the last 5 years but I literally couldn't survive it. I would have taken my own life if the process had gone on. That's what I meant about smells. I caught a wife of the hand cream I was using during that time a nd immediately starting experiencing the extreme anxiety and other side effects.... just for a minute, till like Pandora box, I slammed the lid shut.

Dee

[398emb]

I fully sympathise with your experience - I am super-sensitive to side effects, and I recently had a similar problem when, as a hospital patient, I was given one, tiny, subcutaneous dripped dose of Ketamine. I recovered my senses after 14 hours of hell, and took another 60 hours recoverindg properly. My experience of Fentanyl has been very different, however. While not expecting my pain to be killed, I did hope that it would come to a level that I could live with, and fentanyl patches, along with lozenges when necessary, managed to do this. Fortunately, I suffer minimal side effects, and once I found a dose that was sufficient, my life improved dramatically. I am able to keep busy and interested in hobbies and family, watch TV and read, and even get out of the house on my own, in my car. It's still painful, but I manage to deal with the lower level of pain for the most part.

Morphine gets rid of all the pain, but it does so by knocking me out for the count. To my mind, the point of pain relief is to keep the pain down, while letting you function, and every other pain relief we tried failed me on one or other of these two needs - either I would be awake but in severe pain, or too drowsy to do anything.

With no alternative pain relief, if I was no longer permitted to take my Fentanyl, I can see no real prospect of a meaningful life, and I speak as one who has a great capacity for enjoying little things, like watching a tadpole hatch, or my cat sleep with one leg up in the air! When the alternatives seem to be an unacceptable addiction or unendurable pain, I know which one I will go for.

If you are offered Fentanyl, please don't be too afraid to try it if all other things seem to have failed. Yes, you may become addicted (or physiologically dependent as my specialist preferred to say!) but it might allow you to have some sort of life again. I am open to any suitable alternative medication, if such there is, but all that seems to be on offer is now nothing, and that does not seem to be such a good alternative treatment to me!

[katwilson04 in reply to 398emb]

Thanks for commenting! Interesting to know that it did give you some pain relief, I never got any of that. I know that everyone is different and can tolerate different things/doses etc.

[Dalrymple in reply to katwilson04]

Hi Kat I have been on the fentanyl patches for over two years for severe hip, back, neck , pain , I feel the patches have helped the pain well, but I have a fairly low dose 25mcg not sure how I would do on I higher dose, I have never tried to get off the patches but it worries me after reading your experience that it will be difficult, thanks for sharing your experience, many thanks Jacqui ps I am also from Scotland

[Dalrymple]

I must say this does worry me a bit ,as I am on 25mcg fentanyl patches for pain , which they do help with , I have been on them for about two years thank you for your experience. Jacqui

[katwilson04 in reply to Dalrymple]

Wow! 2 years Jacqui, and have you ever had any problems with them? Xx

[deejames]

I think Jaqui if fentanyl works for you and you have been on them for years, don't worry. You will have physical addiction but it isn't a huge dose and if you do need to come off them it possible to do. I did it, going from 50mcg to zero over 3 months and using diazapam when it got too much. I had more trouble with the final dose of morphine than the final tiny fentanyl patch.

I am on Longtec( slow release oxycodone) now. I know my body is addicted but mentally I would be very happy if I could reduce or eliminate it.

Chronic pain gets us in many ways other than the actual hurting. I used to be extremely articulate with a huge vocabulary at my mental fingertips. I struggle to express myself and the appropriate word is so often just out of reach. And of course their is the constipation !!!!!

Dee

[Matt8394Alien]

I've been on Fentanyl patch 25mcg for 5 years now. I have spinal injuries from the military and they work great but I do get bad withdrawals starting on the last day before needing changed. I also get lyrica and 30/500 solpodol. I feel that I function fine on them. Still managed to get a degree on all this and able to go to work. But I've developed such an addiction to it. I get brain fog etc unless I take solpodol in the morning. I don't take more than two or three a day as I do worry about liver and kidney damage . Thankfully my recent blood work showed that liver is ok. I personally find Lyrica to be far worse for memory and mental capabilities than the Fentanyl. It is the one drug I wish I had never started and I'm only on 100mg per day. Was offered higher dose but simply had to refuse.

Thank you for documenting your experience.

[Dalrymple in reply to Matt8394Alien]

Thank you for your reply I take 400 mg of tramadol over 24hrs with the fentanyl patches, I think it's the combination of the two drugs that works for me , hope things are ok with you Jacqui

[Dalrymple in reply to Matt8394Alien]

Hi Matt thank you for your reply , I have also been on 400mg of tramadol with the fentanyl patches I think using both drugs together that gives me a bit of relief, it is only after a few years of trying different meds that I have got to this stage , and I am not thinking of coming off soon , thank you for your opinion it has been helpful, try keep well Jacqui

[dmacker]

Hi I am 3 days post laproscopy and have been using fentanyl patches for a few weeks prior to my surgery, my surgeon has recommended a 3 month withdrawal from the fentanyl, would it cause me any harm just to stop taking them? I am due to replace one today and wonder whether to bother or just don't use them anymore? I was also on morphine but have had none for a couple of days now. What's your suggestions? Thanks

[katwilson04 in reply to dmacker]

Oh god no, please don't just stop them, you have to cut them down. Even a short time your body will be seeking them. Please don't go cold turkey!

[dmacker in reply to katwilson04]

Thank you, I have put a new one on x

[Loramay]

I have been on fentanyl patches 50mg for the last 3 years along with tramadol as a top up and all I can say is that they have been a life saver. I have managed to continue to work as a teaching assistant in a special needs school I can still kayak although I have to have help moving the kayak to and from the water. My family have noticed a change in me that they put down to my medication but it turned out to be depression due to me not accepting that I am disabled and a course of Cbt is helping me. But I can't sing fentanyl praises enough it has given me my life back again

[katwilson04 in reply to Loramay]

Great to hear! It works for some and not for others - I hope it continues to give you relief! Xx

[Lynby]

I have been using Fentanyl patches for about 11 years now. I started on 25mcg and am now on 50mcg. I have a spinal condition which wasn't diagnosed until I was 18, although I had problems from early childhood. (It was 'growing pains' according to the GP). As the pain increased and after many trips to my GP I lost the use of my legs. My spinal cord was being gradually trapped. This led to 8 spinal operations over 19 years, some more successful than others. Anyway, as a result of all this I have chronic pain in my back and legs and took morphine for years.

Some 11 years ago I became very ill with awful stomach cramps, sickness and diarrhoea. I lost over 2 stone in two weeks. After lots of investigations nothing showed up so in desperation my GP suggested we try Fentanyl patches ( there are no morphine patches). Within a week my stomach was almost better. This was because I am also taking a large amount of other medication for other chronic illnesses, and my digestive system had decided it couldn't carry on with so much. Because patches are absorbed directly into the bloodstream you don't have a problem. So, you will see that I think Fentanyl is wonderful! I have never been pain free whatever I use, but I can live with it - we have to don't we!

The downside of Fentanyl is the 'cold turkey'. If I miss a dose, by just a day, or, worse still the pharmacist hasn't ordered them in on time and I have to wait 2 days - this has happened on occasions. I get horrific pain in my back and legs, my whole body aches, and I can't keep my legs still. I also have terrible diarrhoea - as opposed to the constipation which is one of the side effects of Fentanyl.

My advice to anyone thinking of coming off it quickly is DON'T.

One last thing, NICE or the government, not sure who,have talked about stopping Fentanyl on the NHS as they say that it is too expensive and is only used for terminally ill patients - so? And how are we expeted to manage without?

Sorry this is longer than I intended but I hope it can help someone.

[katwilson04 in reply to Lynby]

Thanks for your post! Was great to read your thoughts and experience on it too!

Now I had also heard that at the time I was getting my patches, my GP said then that he wasn't really supposed to give them out as I didn't have a terminal condition, but that was a few years ago now, and they must still be giving them out?

[Lynby in reply to katwilson04]

Hi, just thought I'd let you know that I had a letter this morning from my doctor's practice, telling me that they're changing my prescription. Durogesic Dtrans ( Fentanyl) patches, to Fencino patches. So, as long as they work the same as Durogesic for me and, this is the only change they make, perhaps Fentanyl will still be prescribed. I hope so for everyone who depends on its' sake.

I don't think anyone who isn't medically dependent on a particular drug or treatment, can understand what impact on your life messing around with them can have. The regime that I'm on allows me to live the best I can, all things considered. Without Fentanyl, my life would be unbearable. It's taken a long time to get to where I am now. I have no doubt that I'm 'dependent' on it but what's the alternative?

[katwilson04 in reply to Lynby]

I've not heard of Fencino patches - what are they? Are they similar to Fentanyl? I sure hope they work for you!

[Lynby in reply to katwilson04]

I've never heard of them either! I have another 2 week's worth of the original ones still to use yet, so I should know if they work in about 2 1/2 weeks! I'll let you know. Take care.

[katwilson04 in reply to Lynby]

Good luck! Xx

[RibvanRey in reply to katwilson04]

Transdermal patch

Fencino is an opaque, colourless, rectangular shaped patch with round corners and imprint on the backing foil:

“Fentanyl 12µg/h” for Fencino 12 micrograms/hour

“Fentanyl 25µg/h” for Fencino 25 micrograms/hour

“Fentanyl 50µg/h” for Fencino 50 micrograms/hour

“Fentanyl 75µg/h” for Fencino 75 micrograms/hour

“Fentanyl 100µg/h” for Fencino 100 micrograms/hour

Just to get this info on your thread for future hunters of the subject. HTH them. Rib

[BCSTAGE4]

I too am on fentanyl patches and have been since failed back surgery 5 years ago, i take the 100mg patches and oramorph for break through pain, if i forget to change the patch or it comes off i tend to get what a would call a buzzing in my head, i soon check and get a new one on. I find it works really well for the back pain, i also have pregabalen for nerve pain from having the upper lobe of my right lung removed 3 years ago, i have no problems with this combination, i only tend to take the oramorph just before i go to bed, sometimes i have to take some in the morning but not too often. In a way, i am lucky as i know they will not stop my drugs, i have stage 4 secondary breast cancer in my lungs and sternum.