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1176986 tn?1264917842

Fentanyl not working

Hello. I am a 31 year old female, and I was in a motorcycle accident 10 years ago, and resulting from that has been alomst 10 years of chronic lower back pain and migraines. However, Only for the past 3 years have I been able to try and treat the pain, I finally found the greatest Neurologist ever, and he is so understanding, and was willing to try narcotic pain relief while other doctors would only put me on muscle relaxers that would not help... anyway, in the 3 years that I have been his patient, I have been on all the 'big dogs'  for pain relief, (morphine, dilauded, etc..)I had to keep changing meds, cause nothing ever worked! anyway, I just was switched from 80mg Oxycontin 3x daily, (because it didn't work anymore, provided no more pain relief) and now am taking 50mcg/hr Fentanyl every 72 hours for a week, and if no pain relief, I am to up it to two patches every 72 hours... The problem, I am getting no relief whatsoever, does this mean I am tolerant to narcotics? I am starting to freak out, because why doesn't it work? I thought the patch was supposed to be for people that were tolerant to Oxy, and Morphine and stuff like that! And whats really bad is that I have tried every narcotic out there, and none work!! Why is this?? Does anyone know? is it possible that my body doesn't absorb it or whatever? Am i expecting too much out of a pain medication? I thought they are supposed to make your pain go away, completely. Are they only designed to make the pain tolerable? but still there? I don't get it! What's wrong with me?
37 Responses
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198154 tn?1337787265
I've been in PM for years and my pain has never "gone away".  Dont get me wrong....I'm very happy with the pain relief the meds provide and I'm not on anything near as strong as you are. Everyones pain's different.   If you honestly have severe pain, no pain meds will completely take way the pain.  They are designed to keep you relatively comfortable.

Hope you find something that works for you.

Helpful - 0
356518 tn?1322263642
Hi,
   Welcome to our community, we are so glad to have you here.
Everyone reacts differently to different medications. What works great for me may not help at all with your pain and vice verse. It is trial and error when it comes to finding what works for you personally.
It is VERY important to understand though that none of the medications are going to make you completely pain free. This is an unrealistic goal and any doctor will tell you this up front before they even prescibe pain medications.
You need to find the right medicine and combination that works well for you.
Normally your given an extended release medicine and also a break through medicine that will take care of break through pain.
The Fentanyl is a strong medication and while it works great for some it may not be the medicine for you. Are you taking a break through medication with it?
Talk with your doctor and explain that it is not working and see what other options are available for you to try.
All of us has been through this. It is very frustrating but once you find the right medications it will have been worth it.
Your metabolism has a lot to do with how well a medication may or may not work for you. Also there is tolerance issues to deal with.
I hope you are doing better very soon. please let us know and keep us updated and if there is any other questions you have or if you just need to talk or vent were here for you:)
Helpful - 0
767538 tn?1276575320
I am currently on 100mcg Fentanyl every 72 hours and percocet 10/325 mg for breakthrough pain.

I was tarted on the 25mcg patch and was titrated up to the 100mcg which was considered my therapeutic dose. I was on Methadone prior to the Fentanyl.

Fentanyl is VERY strong, they say almost 80 x stronger than morphine and the Dr will normally start you on a lower dose to see how it is tolerated. It does NOT work well for everyone and I didn;t really start to feel any pain relief at all until I was on the 75mcg patches.

I also wonder what the conversion dose of Fentanyl is for the 200mg of OC you were on prior to the patch? It may be worth looking at that and that may well be why you are feeling nothing yet with Fentanyl?

It's also vital to ensure that you get full adhesion on your skin so you can correctly absorb the medicine so make sure it is sticking correctly.

I have found Fentanyl EASILY to be the best big-dog med I've ever taken although there are many here that feel differently about it. Be cautious also, because it CAN kill you if you get too much of into your system which can happen for many reasons.

Feel free to PM if you have any further questions. I would ask your Dr if the 50mcg patch is large enough for you given the meds you were on prior and the tolerance you have probably built up over time.

NO pain med is designed to take ALL the pain away and Fentanyl certainly doesn't take all my pain away. It has though helped me to be able to maintain a busy work schedule and it jsut seems to help me to deal with the pain I experience without allowing my mind to get me down about the pain if that makes any sense? It has increased my endurance for sure and I'm very thankful to have it so I can earn a decent living for the time being.

I wish you all the best. Please keep us posted on your progress.

Best wishes.

-Brian.
Helpful - 0
535089 tn?1400673519
Hello Blujax:

While you've received some great information here, I want to add to it. I also use the Fentanyl Patch. I was switched from 10mg Oxycontin, 4x per day to 75mcg Patch every 48hrs. While that worked great for a year, I was recently upgraded to 100mcg every 48hrs.

I feel that the dose your currently taking might not be the right dose for you. With the large dose of Oxycontin you've been taking, I would think that the Doctor should have started you on at least a 75mcg patch.

With the Fentanyl, it truly is trial and error in the beginning. Keep in close contact with your Doctor and let him know that it's not providing good relief. Your tolerance is obviously very high and as a result from the 80mg of Oxy, you will most likely need an upgrade.

BT meds are also a must with me...are you taking anything else for the pain?

To sum it up...keep in close contact with your Doctor in the beginning of the Fentanyl journey..it's almost a must do. I'm confident that with the right dose, you'll start getting relief soon.

Please take care and good luck,
Mollyrae

Helpful - 0
1176986 tn?1264917842
thanks for your comments.   I do have 30mg. Oxycodone for breakthrough pain....  so right now I am on the 50mcg/hr patch every 72, plus the oxy for BT, and the doc told me if I have no relief after a week, then I can go up to two 50mcg/hr patches every 72, so i guess i'll try that first. But I am just so sick of going in and saying, "the pain meds don't work" I am afraid that he is going to start not believeng me and think I am just trying to get stronger stuff .  Cause who else tries all those other narcotics, and they don't do a dam thing?!  ya know?  I mean, if the Fentanly doesn't work what else is there? Is there something else? it's just frusterating, escecially when you know that most people don't believe me, think I am trying to just get high or whatever.  can you believe that my pharmacist would give me static when I started taking the stronger stuff? Or have the dose changed? I would go there right after getting the script from my Doc. and he would still call to make sure it was legit. And he would make comments 'to me, like "Morphine, what do you need that for" or "you're up to 80 mg. now?' as far as i;m concerned, his job is to fill the script! not be the one to judge wheater I really need it or not! last time I checked, he didn't have 'MD' after his name! I don't go to that pharmacy anymore, but that whole experience has made me self concious.  So now it's like i'm convinced that everyone feels that way, like, they can't see the pain, so it can't be real.

Helpful - 1
1176986 tn?1264917842
Everyone is so frickin nice on here! I love it...

how the hec can you be so happy when you're in constant pain!!!??
Helpful - 0
767538 tn?1276575320
We ALL have good days and bad days!!! I will go for a while inbetween posting on MH if I'm exhausted or having a particularly tough go of things with pain which does happen to me quite often unfortunately!!

But yes on the whole, most on here are SO very nice that's true, I find that when I'm feeling sorry for myself or thinking how much life ***** with the hand I've been dealt it seems to help to get on here and read and see how many other people have it WAY worse than I do. It also lifts my spirits to be able to help or give someone advice and it costs us nothing except our time!!!!
Helpful - 0
767538 tn?1276575320
Weve all been there when it comes to trying different meds/strengths to find our therapeutic dose. What you are feeling and experiencing is perfectly normal as the majority of us have already gone through it. I happen to think the Fentanyl WILL work for you once your Dr gets you to your therapeutic dose.

I wouldn't worry to much about your pharmacist, he/she is just doing a job and as long as it's legit(the script) who cares? Yes I agree you do get alittle self conscious from time to time especially when they see how young you/me are. Hey I'm 44 not exactly put out to pasture yet, but getting a little 'long in the tooth' I'll agree!!! But you are only 30 years YOUNG. It's always tougher when you are younger and needing the big-dog meds and when you look so healthy it only adds to it, I look perfectly healthy to an outsider but of course I'm not unfortunately.
You will always get the "Why do you need this medicine" questions from the ignorant people, and why do you need this at your age etc, etc,etc.......I use the SAME pharmacy every time I get scripts and I fill them every four weeks so they know me now, I'd suggest having a word with your pharmacist if they are making you feel uncomfortable. They probably don't mean anything by it, I ended up having about a twenty minute conversion with my lady pharmacist and was telling her my history about the car wreck and the surgeries I'd had and she started tearing up, she's about the smae age as me and was telling me about her brother who is about your age and on Methadone for back pain which is what I was on at the time. My wife felt I was on too much Methadone so I asked the pharmacist about it and she said absolutely not and many are on much higher doses especially addicts who take Methadone instead of heroin.

I see in my last post they blanked out the word I used to describe how much life can S U C K at times........

Being in chronic pain is difficult to deal with yes I will agree with you on that sometimes the stigma that associates with it is the hardest part to deal with. The looks, the comments, the mindset of the uninformed and ignorant that they feel we could/should work or do more than we currently are doing and it's even worse when it's a loved one who has the viewpoint. All I know is I wouldn't wish my pain on my worst enemy, I pray daily for a 'miracle cure' which I don't hold my breath for, in the meantime I do the best I can, and make the most out of the good days, try not to beat myself up too badly when I'm down due to increased pain (easier said than done).



Helpful - 0
1176986 tn?1264917842
Ok, her is my newest concern, I just started thinking about this last night, for no reason, just out of the blue... I've been reading all the horror stories on how Fentanyl can be a bugger to get off of, so what if when there comes a time when for whatever reason I can no longer see my current pain doctor, and I can't find a doctor that will give me either the same meds, or anything, What am I to do? I'm scared about it! I was seriously thinking last night that I would tell my neuro. doc that I didn't want to be on Fentanyl because of this.  but it is working, this is my second day that I have ahd no pain, since I started the patch! does anyone else have these concerns, or just me?

Jax
Helpful - 0
356518 tn?1322263642
We all share this concern. As chronic pain sufferers we get the uneasy looks from the doctors wondering if were addicted or diverting our medications. This is unavoidable as the ones who do divert their medicines and the ones who are addicted use their doctors for their next fix make it hard on those of us who truly do need the medication.
Chronic pain is a disease just like any other and has to be treated. There will always be  those doctors who do care and will treat chronic pain Pt's so do not give up as they are out there. I happen to have found one I trust implicitly as well as Tuckamore. She has a great doctor who listens and treats her well also.
Do not let this become an issue and worry about it when you have no reason to at this time. Stress adds to chronic pain ten fold. So let this worry go until/unless you need to address it:)
Helpful - 0
Avatar universal
When I was on the Fetanly patch I was completely out of pain and completely out of it. Please be very careful adding any other medication without talking to your doctor.  We are all so different. I take oxycontin and even with it I have pain. I would never use the Fentanyl patch again and will take a little pain.  But that's me.
These medications are very dangerous and depress our nervous system/breathing.  The more you add the more chance there is for side effects not the least of which is you stop breathing.  So please be very careful especially with this patch.  The higher the dose the higher the side effects.
For me I stopped eating. I started at a very low mg and was ramped up to 100mg.  I slept most of the time, had no appetite and suffered with depression.  I had the oddest taste in my mouth all the time. I also did not realize I couldn't just take the patch off myself. I did so one evening. I spent the next 3 days so ill, hallucinations, vomiting and sicker than I have ever been. The only thing I could do was put the patch back on and then ween myself off.  
I actually get sick talking about right now.
So please be careful and best of luck with your pain.  
Helpful - 0
356518 tn?1322263642
I just want to clarify one thing that was said. I do not want this to frighten you or make you uneasy in any way.
The dose your on is safe for you as the doctor prescibed it. If taken like prescibed there should be no reason for you to worry about having breathing problems. You will not simply stop breathing. While narcotics does depress the nervous system and breathing your doctor would not prescibe a dose high enough for this to occur.
I assume you have read the insert that explains how to use the medication and not to use a heating pad if you have a fever please call your doctor for instructions.
When the patch is heated it releases the medication at a faster rate than intended.
But please do not think your going to cease breathing.
If you have any questions about this medication feel free to ask or call your Pharmacist.
I hope your doing better very soon:)
Helpful - 0
1176986 tn?1264917842
I have read the insert, quite a few times too, because I am a little scared of this medication. I do have a question tho.. I have the gel filled patches, from Watson. And I wonder, how does the medication pass thru and get inside you? are there little microscopic holes on the sticky side of the patch? I don't see how this can possibly work, this is kind of alarming because when It was time to change patches, when I took the old one off, there was still a pretty good amount of gel in it! i'm scared that it's not getting into my body! ,and I was kinda mad because I had to throw perfectly good medication out!

AND, I got really mad today because when I went to put on a new patch, I placed it in a spot that I I wasn't comfortable with, so I took it off to place it somewhere else, and It wouldn't stick, So I had use yet another patch.. SO I was really Peeved that I had to waste a brand new patch.  So now I hope I won't run short!

Can you give me some ideas on where is a good place to stick the patch, where it won't bother you as much? or rub, or crinkle from moving around? Anyone?

Luv ya guys!

Jax
Helpful - 0
356518 tn?1322263642
I am not sure exactly how the medication gets into your system through the covering but I assure you it does:)
I will do some research and see if I can find out how it works exactly though.
You can get the cloth tape, the kind that will breath to help keep the patch on and the company that makes them has 3M coverings to keep the patch in place. You can call the manufacturer and they can tell you how to get them.
I have heard here that the best place is the pelvic area. I will look and find the post where I read it for instruction's on using this area of the body. Nomethforme uses the patch and made the suggestion.
When using tape just keep in mind to not cover the entire patch as it will then cause it to heat up.
The gel left in the patch is common and the main ingredient is used even though it may look like it is still there.
If you still have the patch you said would not stick I would keep it unless it makes you run short you can place it back on with the tape. Wrap it up in case you need it. Besides that they are expensive:)
I will find out the brand of tape too for you.
Helpful - 0
547368 tn?1440541785
Hi Jax,

I too wanted to welcome you to the Pain Mangement Forum. Sorry I am late to this discussion. I've had a family illness that required my attention. As noted you are receiving some good suggestions and opinions.

You asked how the medication in the patch is able to work on your pain. It is called
absorption. The Fentanyl patch is a transdermal medication. Meaning when placed on the skin it will be absorbed through the skin and make it's way into your bloodstream delivering a specific, controlled amount of medication over a period of time. It maintains an even level of medication.

If you contact the manufacturer, or have your pharmacist do so, they will usually provide you with an adhesive like patch to go over the Fentanyl Patch. This will help in it's adhesion. Where you place it may make a difference in the "sticking" power. Your skin type also plays a part in it. Ppl with more oils in their skin tend to have more problems with adhesion. .

There are several types of the Fentanyl Patch. Some contain an actual reservoir of medication while others distributed the medication evenly in layers that are broken down and absorbed as you wear it. Some claim that the layers are safer. They are all expensive but the layers may be more so.

I have never had complete pain releif in spite of the different narcotics that my physician has prescribed. I did note that your said the patch is now working. What wonderful news.  

We'll look forward to your updates.
Helpful - 0
Avatar universal
The next time that happens don't waste the patch, get some surgical tape and tape it on.

We aren't allowed to advise you because we are not doctors.  Sandee is being very politically correct.  I will be very direct and hopefully not make anyone mad at me but this medicine is something to be afraid of. And It WILL/COULD make you stop breathing if mixed with other meds and we are all so different.   When the doctors prescribe something they are going by guidelines and would never intentionally prescribe something that would stop someone's breathing but people die from narcotics all the time.  So please be careful with this medicine.  As I said I will never use it again and I know there are people who need it.  
I was switched to methadone a few months ago because my insurance will not pay for brand oxycontin.  I insisted the methadone be stopped, my breathing was so slowed and my blood pressure was so low.  This was on the lowest does of the methadone.  I wasn't ramped up to where they wanted me to be.  These medicines are deadly, speak up and don't be afraid to question your doctor..
Helpful - 0
356518 tn?1322263642
I will not argue this point in the open community. If you have a problem with me and how this community is run please contact Med Help and they will assist you.
Helpful - 0
1176986 tn?1264917842
Well, will it still work if you put it down in the pelvic area? because the insert says to put it on the torso.   guess I took that to mean that it wouldn't  work anywhere else.  Why do they tell you to put it on the torso?

so when your breathing is slowed does that mean that you actully have to 'work' at breathing? I think that happened to me once on a different type of medication, where it felt like I had to think about it and remind myself to breath, it was weird, I was so scared... ummm... trying to remember what medication it was, I think It was Morphine... had to of been, cause I won't touch the stuff now!

Thanks all for the advice and responses!
Jax
Helpful - 0
356518 tn?1322263642
Hi Jax,
    Many people try different places to put the patch and for some the torso works well for them. Normally they are placed on the upper back but as you say your having trouble with that position. Another member here mentioned that he places it on the pelvic area and it works well as far as staying placed and out of the way. He explained too that your undergarments helps it stay in place.
As far as having breathing problems, if your breathing slows dramatically then go directly to the ER. You do not have to remind yourself to breath it is an involuntary movement as your brain signals you to breath without your even knowing. That is a short description but easy to comprehend.
If a medication causes your breathing to slow you will know it immediately. But please do not stress over this. Your doctor knows what levels of medications that would cause this as well as any other condition you may have that would cause this to happen.
It does happen when people overdose on narcotics but your fine and do not need to stress over this as you have been taking this medication long enough that you would have already had breathing problems if it were going to happen.
I have someone that will PM you on instructions on placing the patch in the pelvic area:)
Helpful - 0
1176986 tn?1264917842
Thanks sandee! I really appreciate it!!
Helpful - 0
356518 tn?1322263642
Your welcome:)
I am here for you and will help in any way I can. If you have any other questions or concerns feel free to ask.
Helpful - 0
767538 tn?1276575320
Wow,

talk about a heated discussion. It's 'NOT' cool guys to 'FREAK' someone out with your own opinions about 'ANY' med. I happen to be a Fentanyl success story and there are 'MANY' others out there in addition to myself. Do all meds work the same for everyone, 'NO'........That's why we converse with our Dr's and they determine that the side effects are worth having because the med is more beneficial to you/me.

I have been on 'MANY' big dog meds and as you can see from my user name I'm not a big fan of Methadone any more..........But my user name is NoMometh 4 ME!!!!!! NOT NoMoMeth 4ALL.......Does it mean it cant/wont work for someone else? Of course not, do I recommend it to others? No, but I certainly wouldn't judge or chastise someone based on their decision to use it or not. Methadone 'DOES' work for many but not all.

Furthermore, ALL pain meds we take can kill us, 'ALL' of them are difficult to come off of, it's simply the nature of the beast, I happen to believe as 'MANY' others do that Methadone is one the longest and hardest drugs to detox off of, I titrated down and it was still a living 'HELL', took me three times to get off of it.

We are CP patients who will need these meds for the rest of our lives unless they miracously find a miracle cure so don't hold your breath. Bottom line here is, if we take these meds EXACTLY as precribed by a Medical Doctor there is little if any chance of something bad happening.

I think 'WE ALL' need to be a little less pushy or judgemental on what does and doesn't work for someone else.....This is why we have as many options as we do and our Dr's have decided that the benefit of the med he/she has prescribed to us far outweighs the side effects we may face.

What can I say to summarize, Fentanyl 'HAS' give 'ME' a portion of my life back that I thought was gone for ever, precisely why my Dr prescribed this mediaction to me.
Do I think Fentanyl should be prescribed before a host of other pain meds on the market?
No, absolutely not, that's why it's designed for patients who are 'OPIATE TOLERANT' and require around the clock opiod medication for serious pain.\ suh as I do.
Lastly, 'ALL' opiates will have 'PAWS' associated when stopped. That being said, if you/me are being followed by a Dr, you can be titrated down slowly and correctly and other meds can be gievn to help to ease 'PAWS' and make the discomfort as minimal as possible, but there will 'STILL' be negative experiences regardless.

I hope I've made my point here as best as I could, we all need to remember that what we take is between us and our Physician and that anyones opinion (mine included) should be taken with a pinch of salt because as I've mentioned earlier, just because one med garners a bad reaction for you, does 'NOT' mean it will for somebody else.

END OF.

-Brian.
Helpful - 0
1176986 tn?1264917842
END OF? what does that mean?! Does that mean that it's the "END OF BRIAN"? please don't go! why are people getting so upset?!  Please lets not argue or fight! This is just supposed to be a community where people can go and talk about their problems and vent to others who know what they are going thru! When you have no one else around you that you that you feel just doesn't get it, you come here for that support. That's all.  Nothing more, nothing less.  can't we all just get along?!!

Jax
Helpful - 0
767538 tn?1276575320
Sorry Jax,

That's my Scottish phrase and wording saying what I'm saying should be the end of the story!!!! I always forget I'm in the States and that people don't as a rule understand my phrases!!!

Sorry!.

Not going anywhere just yet, unless my post gets me kicked off anyway!! I just want people to be a little more sensitive before they post something and make a blanket statement about the effectiveness or un-effectiveness of ANY med.

We all need to be alittle more opem minded I think.
Helpful - 0
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