Scared to start prescribed Fentanyl Patch - Pain Concern

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Scared to start prescribed Fentanyl Patch

Coco1115 profile image
39 Replies

hello,I am awaiting neurosurgery for multiple extruded discs in my lumbar and sacral spine. My pain has not been controlled on oral opiates, gabapentin, and muscle relaxers. I have been unable to sit, drive, and complete basic tasks for a little over a month now due to symptoms.My medications were changed yesterday, but I am hesitant to start newest prescription for 12 mcg/hour Fentanyl patch even though my pain is a 8/10 and I am progressively been getting worse.Can anyone share their experience using Fentanyl patch? What can I expect the first time applying a 12 mcg/hour patch? Was it effective? Did you continue any oral opiates at the same time? i am a single mom to a 9 yo child and concerned about side effects and need to be coherent. I am basically really scared to initiate use of the patch but also in significant amounts of pain that is debilitating currently. My fears are if course potential for dependency on the patch and on the other end of the spectrum fear it will not be effective.Can anyone share their experience on what I might expect starting this patch?Any insight would be greatly appreciated!Many thanks

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Coco1115 profile image
Coco1115
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39 Replies
Madlegs1 profile image
Madlegs1

First off -- you need to control the pain.12 is a low strength.

You may experience some reaction at first if this is your first experience with any opioid. Insomnia, itching etc.

That will wear off after 3 weeks.

The patch may not last the 3 days, but get back if you find that to be the case, and I'll sort it for you.

Go for it. Well worth while for pain control.

Good luck.

Coco1115 profile image
Coco1115 in reply toMadlegs1

I really appreciate your reply. Many thanks

RobbieT profile image
RobbieT in reply toMadlegs1

I agree!

Bananas5 profile image
Bananas5

Total agree with mad legs...you have been started on the lowest possible dose..

The 72 hrs slow release patch rarely lasts that lonhg ...it is a sort of safety cut out by pharma companies. You will know when it stops working but try not to change it early or you will run out between scripts.

My husband started on low strength but over the years this was increased to 100 mg before changing to oxycontin.

It worked very well for him and yes go with them

x

Coco1115 profile image
Coco1115 in reply toBananas5

Thank you for the reply. I was nervous it would be too strong, so that makes me feel better.

Bananas5 profile image
Bananas5 in reply toCoco1115

No pain meds are started high as everyone's levels of tolerance are so different.

Good luck ....sure it will help

x

Hzhr7 profile image
Hzhr7

I was on Fentanyl too but had to go up quite a lot higher . They do work very well & to tell you the truth I had no side effects . I did find that the pain killing effect ran out before they were due to be changed . I also took Oramorph & paracetamol to stop the break through pain . I was gradually moved on to Buphrenorphine patches by my pain management consultant as she didn't recommend Fentanyl long term . Found different makes of the patches made my skin sore whilst others were fine xx

Coco1115 profile image
Coco1115

That is interesting about the skin reaction. This will be for very short term use as hopefully the neurosurgery will work and I wont require any pain medication after that time fingers crossed. Thanks so much for sharing information!

Madlegs1 profile image
Madlegs1 in reply toCoco1115

Do come back if you experience any problems at all.

There are ways around any of them.

I was on Fentanyl for 18 months post spinal reconstruction.

That's how long it took me to go from 100 to zero.🥵💀

Coco1115 profile image
Coco1115 in reply toMadlegs1

18 months!!!!!! Oh my that sounds like it was an ordeal. I am not allowed to be on pain meds in my line of work, so let’s pray that is not the case for me! I will certainly be back on here for you guys’ wisdom and support and to give the same back where I can!

Bananas5 profile image
Bananas5

I did spot you had posted om another forum......... \you received some very bad advice....cut the patch in half.

Never ever do this...it is dangerous. Due to the compound of slow release it is made up of different size 'granules. These release their ingredients at different speeds. Cutting a patch in half takes away any control and can easily cause an overdose. Only use as prescibed.

My husband was on them for about 10 years and with an itchy reaction to them was given the 'gold' which are more expensive and far better

x

Madlegs1 profile image
Madlegs1 in reply toBananas5

It depends very much on which patch is used.Duragesic patches are area specific, which means the size/ area of the patch determines the amount of med released.

I was on the Duragesic,and cut them all the time. One has to be very exact in the cutting. Some patches were oval, which made it very much more difficult to be exact.

Cut them in 3rds, and apply one third each day. Write on each one to help remember which is which🤔😝

I totally agree with not cutting the gel patches, as they are not area specific.

Zinc tape can be used for holding the patch.

Shoulder is usually a good place to fix them.

Cheers.

Loramay profile image
Loramay in reply toMadlegs1

I also cut my patches into 3rd and I measure it out using millimetres, it has been great because by shaving off a millimetre at a time I have reduced it from 100 mg to 50mg and my doctor was aware of this and everything has been fine

Madlegs1 profile image
Madlegs1 in reply toLoramay

What make were yours?

Coco1115 profile image
Coco1115

Thank you, I would not cut them in half. I applied my first patch today then immediately realized they sold me expired patches, so removed and returned them. Will have to wait on replacements or for them to send to another pharmacy with mesication that is not expired!

Rx expiration
Bananas5 profile image
Bananas5

OK good but you posted your question on another forum and that was the advice from a non user. I would check your posts.

Selling out of date drugs by a pharmacist is very very serious. Not every one can read the date on the packaging.. It may be harmless but they have a duty of care to patients and have a strict code to adhere to. This could cost the said pharmacy is licence.

x

Coco1115 profile image
Coco1115 in reply toBananas5

yeah I put the question in a few places to try and get as much feedback as possible as I am new to the site and was not certain how responsive participants are on here :)

Fentanyl makes me nervous because of how much negative news coverage it is getting. However, your replies and others have made me more confident in giving it a try and working with my provider to manage it with care.

I am very displeased with CVS right now and will be reporting my experience with them as that was not the only mistake they made. I figure they have probably numerous expired drugs on their shelves if this one was out of date for an entire year then they are not doing a good job with inventory checks which could be serious for the individuals they serve!

MSTKing profile image
MSTKing

I used to have them and personally they didn’t control the pain at that time.

Coco1115 profile image
Coco1115

how long did you give them a try before deciding they did not make a difference? Thank you for your input!

Bananas5 profile image
Bananas5

Ask to speak to the pharmacist himself, or herself, in private. See if you can understand why this happened.. Ay drug a year out of date is very serious. and a lot of very vulnerable people rely on their pharmacist for advice if they can't get to see their GP

And word of advice as you are new to forums here...if you are going to post on many sites make sure you follow up your posts. The one on cutting patches in half is potentially dangerous and you should either delete your question or report answer

x

Coco1115 profile image
Coco1115 in reply toBananas5

thank you I did not mean to cause issue ls.

Bananas5 profile image
Bananas5 in reply toCoco1115

You aren't but you do understand what could happen?

If you don't want to say anything then thats your choice but I hope someone says something before......well I don't think I need to spell it out.

These drugs are powerful and heavily monitored for very good reason.

x

DonutEater profile image
DonutEater

Hi Coco I’m on Fetanyl as well after failed back surgery and I find yes they help me with my pain levels not 100% I get flares up every day but it does take the edge off my pain I used to have oramorph but it made my pain worse so I had to stop it. I’m on Gabapentin as well that helped me with my nerves in my leg as I felt like I had creepy crawlies and water trickling down my legs such a weird sensation. Good luck hope you get something sorted.

Coco1115 profile image
Coco1115

thanks so much for the reply, it makes me hopeful!

Paul_Wakefield profile image
Paul_Wakefield

I have a spinal injury from 12 years ago.

(3 fractured cervical vertebrae and damage to the spinal cord and Brachial plexus)

I was started on Fentanyl patches 11 years ago. 12microgram per hour. They were increased each year . I have been on 100microgram ph for the last 3 years. I couldn’t function without them. I don’t get side effects. A new patch takes a while to start working. About 12 hours. Maybe as long as 24 hours. In my experience they last for the full 72 hours. I was originally on Oramorph and Pregabalin. I still take both of those.

I’m happy with them. If I could take more I would. I have no reservations about them at all. Much more consistent than the peaks and troughs of taking tablets or capsules.

Good luck with them

Coco1115 profile image
Coco1115

Thanks Paul, glad to hear you have your pain managed. I just applied my first patch about an hour or two ago. I am in a horrid amount of pain right now, so it is good to know I should not expect to feel any benefits right away as I certainly do not feel any worse or any better. Hoping I notice something tomorrow as I am really feeling defeated and tired of being in constant pain. Trying not to let depression get the best if me :)

Paul_Wakefield profile image
Paul_Wakefield in reply toCoco1115

You’re welcome Coco. When I first used Fentanyl patches I was warned that some people don’t get the pain relieving benefits until the second patch. Luckily, I felt an improvement by the end of the first day but you might take longer. Bear in mind that you’re on the smallest possible dose and you were already on oral opiates. You don’t say what dose of morphine you were taking so it’s difficult to know whether 12mcg/hr has a greater or smaller pain relieving effect.

There was a mention of cutting patches. Almost certainly pointless if you’re only on 12 mcg/hr. You should NEVER cut patches if you’re using gel patches as it will cause a release of too much fentanyl. If you’re using “Matrix” patches it might be possible but see your doctor first.

Depression can be a big problem. Talking to other people in the situation can help. If you can’t see people in person then maybe try online. I got some help on Reddit. Be careful taking medical advice from unqualified people but they can be useful for hints and tips and lifestyle advice.

reddit.com/r/PainManagement

reddit.com/r/opiates

reddit.com/r/ChronicPain/

reddit.com/r/depression

There are plenty more. It helps if you find people experiencing identical injuries.

Good luck

25clai profile image
25clai

I was prescribed butrans patches ,when I hit rock bottom in 2015. I had undiagnosed severe Sjögrens, debilitating pain from a botched operation for ovarian vein embolisation, left me in agony. The pain was so bad I would pass out after even short trips in a car. I had a localised reaction to Butrans, so my gp suggested Fentynal patches.

I suffered pretty scary side effects. I am someone who is prone to suffer from adverse side effects anyway, so my advice should be viewed with that in mind.

The first thing was itchy skin all over followed by pain ,as if someone was stabbing me with needles , torso, chest and thighs. My breathing started to struggle. At this point I took that patch off, as I had chest pain. I revisited the Butrans patch and took antihistamine to sort out the local reaction. I was on that patch for 2 years after. I had 2 operations and managed to get off the patch by slowly weaning myself off. Took about 2 months to stop.

A few years after, I had a ruptured appendix and during the surgery I was given Fentanyl., as the op became complicated. I woke up from surgery and had a similar reaction again, except more extreme, but at least in hospital at the time.

Opiate patches got me through a bad period so I could be more mobile, but I hated the side effects and I don’t think they are a long term solution.

I feel you needed to hear a different perspective re Fetanyl, especially as you have a lot on your plate.

Mitch48 profile image
Mitch48

Hi there,

I’ve been on Fentanyl patches for 12 years, I have extensive cervical & lumbar spinal injuries. I started on 25 mcg and remember sleeping lots, luckily my husband was at home looking after the children whilst I got used to that side effect which lasted about a week. I went up to 100 mcg but found that they were too strong and I didn’t want to drive whilst on that dosage.

Please be aware of current laws surrounding driving after taking prescription medication whilst being unfit to do so and relevant drug driving offences.

I’m on lots of other meds for nerve pain, arthritis etc, the usual ones, Gabapentin, Baclofen, Naproxen, Duloxetine etc and use Oramorph for breakthrough pain. The main reason I like the patches is that there’s one less oral drug to take and there’s sufficient pain relief at times albeit doesn’t take all my nerve pain away but some (I’m in constant pain due to cervical & lumbar radiculopathies etc) but no doubt you’ll know that opioids cannot do this hence taking another med such as Gabapentin or Pregabalin and using another opioid for breakthrough.

I hope you get some success with the drug & your surgery goes well.

Regards,

Mitch

Coco1115 profile image
Coco1115

Thank you Mitch for sharing your journey. I am no longer able to drive as my pain radiates from my lumnar area down my right leg making it unbearable to sit or use the leg for driving. I have to lay down in the car as a passenger when I go anywhere now :(

But that is really good to keep in mind should I be able to drive again in the future! I am on Gabapentin as well and cannot really determine if it is doing anything or not. I have been on it for about five weeks now. Maybe they will continue titrating the dose up if needed as I am well below the max daily dosing.

It is really hard to tell what is effective at this point since I was started on so many thing at once and the pain remains severe. Counting down the days until surgery and remaining hopeful.

Warm regards and thank you again.

Mitch48 profile image
Mitch48 in reply toCoco1115

Hi there,

Sitting is very problematic for me too and I avoid it when I can but thankfully, the few times that I can get out a month, I have no option but to sit either as a driver or passenger in the car, usually far more of the latter. I also use a padded cushion in the car and at home & also a Tens machine when a passenger either on my lumbar spine/ hips &/or whichever leg is the worst with electric shock pain/cramps or spasms. My mobility is greatly affected too (I have numbness in my feet and my right lower leg) and have balance issues, so I use a wheelchair mainly for distance but increasingly for short distances as walking brings on my symptoms & aggravates them.

I’ve been injured for 19 years & have been on various meds all this time (I have had so many pain management treatments & procedures and lots of surgery) and have reduced my maximum dose Gabapentin from 3600 mgs to 2700 mgs over a decade ago as I could not continue my higher education due to the drug’s effect on my cognitive function. Sometimes it’s difficult to deduce whether a drug is working but when the time is right, you could always reduce it or stop taking it, after titrating the dosage down properly both times to really find out whether it is having an effect on your pain or not. Likewise Meds need a while to start building up in your body & having a positive impact, it may be months before you can deduce whether you need to take a higher dose of something or have indeed found the correct level for an effective maintenance dose.

You haven’t said how long you have been affected by the disc prolapses in your lumbar spine, have you had many pain management procedures prior to waiting for surgery?

Kind Regards,

Mitch

Coco1115 profile image
Coco1115 in reply toMitch48

Wow 19 years makes you an expert in all things pain management for sure! I bet you have helped blaze the trail for so many others.

I have a long standing history of cervical, lumbar, and sacral disc herniations and fractured coccyx. About 20 years since onset. However most recently, I have had a wonderful five year run with minimal need for any pain management interventions besides the occasional oral steroid or IM toradol.

I have had numerous epidural spinal injections over the last decade, some results better than others. I have had PT in the past and at present. But with this flare and MRIs the discs in the L and S spine have finally become extruded thus deforming the spinal cord sack and lots of nerve roots as well as notable bone spurs, so this will be my first surgical intervention for a spine related reason.

Coco1115 profile image
Coco1115

Update: I applied my first patch around 2pm yesterday. I am disappointed as I have nothing to report. No improvement in pain at all. In fact, I would say last night was one of the worst nights I have had since 2/2023. I only slept maybe a hour an a half last night and noticed pulse was very low for my normal range, but other than that there is no benefit. I am continuing to take PO opiates as ordered in conjunction with the patch.

Thanks all for the responses!

Bananas5 profile image
Bananas5

Give it a chance...it is called slow release.

x

Longlegs012777 profile image
Longlegs012777

hi, I was on the patches after a prolapsed disc diagnosed in 2016. My patches were increased gradually and I ended up going to 50mcg/hr patches until I recovered and was weened off them. Side effects are different for everyone, the one I experienced most was the drowsiness. Overall I was okay on them.

Beaty1 profile image
Beaty1

When I tried my prescribed fentanyl patch I was immediately sick. Of course it could have been a coincidence .... maybe something I had eaten, but I took it off straight away just in case. I am sure many people find them beneficial without that side effect, but I didn’t try again! I hope it works for you.

Danni54 profile image
Danni54

I agree with all of the replies and have been on 12mcg Fentanyl for a few year's and wouldn't be able to function without it. They made me tired for the first couple of week's and after that, .no problem. I have 2 fractured vertebrae which might now be 3 but have had a few health problems so I am also on other Opioid's and the one thing that has stopped me is Oramorph which has made me exhausted! Please try the patches and I agree that sometimes they stop before the 72 hour's and I know because I get restless leg's and arm's ! I find that the hot weather or if I get too hot it makes them run out too soon ! I have multiple health problems which you can see on my profile....what a mix of painkiller's I take !!Good luck and please let us know how you get on.

All the very best x

Wayne64 profile image
Wayne64

At first when I was offered the fentanyl patches, I was very hesitant. I was on methadone, oxycodone, Suboxone and none of them eased my pain. I then tried the patch. I had found relief for my back pain. I was started with 50mcg but needed at least 75mcg.

Konagirl60 profile image
Konagirl60

How are you doing? Did the duragesic help with your pain and neuralgia?

I used the 12mcg fentanyl duragesic patches for over a year and I found them effective but not 100%.

Once I had the surgery I needed, I weaned off of them.

Have you tried CBD oil for pain? It might help. Good luck.

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