Fentanyl not working

[Blujax]

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?

[Blujax]

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.

[Emslady]

please remember that we are all different. You need a digestive enzyme called CYP2D6 to metabolise opiates properly. Many of us are missing it, or one like it responsible for numerous metabolic break down.
Sounds simple but it is very complex and no where near being fully understood. We are living in a modern medieval world, and will be looked back on as such.
I was born in chronic pain and know no other way to be. Hypersensitivity and medication gave me tardive dyskinesia which is being masked by fentanyl - as it runs out I start fitting - every other day. I research my problems alone as the NHS in England is horrendous for someone like me. I get little help for EDS, not even sent to the right people, files not updated or lost, referrals not adhered to, on top of the rudeness by medical staff.

[Smarto1]

I have peripheral neuropathy and have been on morphine for three years,  Recently, the morphine has been ineffective.  My doctor put me on the 50 mg patch and kept me on 60 mg of the morphine for break through pain.  Neither of these medications are helping with my pain.  The doctor advised me today that there is nothing further he can do because of the high dosages I am taking and there would be serious risks if anything was increased.  Does anyone have any advice for me.  I am just trying to see if there is another avenue for some relief.  Thank you.

[Emily_MHManager]

Hi everyone -

This thread is about fentanyl. If you would like to ask about something else, please start your own thread.

Thanks!

Emily

[mag_pie_wendy]

I'm new but I need advice on the following if anyone can:  I have multiple discs out in back,
Brain surgery and head pain (it's not migraine, which I get alot or headache) and 3 neck surgeries to sum it up. What I'm tryin to figure out is oxycontin 80 mg 3 x day and fentanyl patch 75 mcg every 72 he's before the next patch. Here is what I can't figure out is. The oxycontin works great for my back but does not do much for my head pain, the fentanyl I take works good for my head pain but does nothing for my back . Why doesn't just one of my meds control my pain, instead of needing both meds. I'm confused ?

[mag_pie_wendy]

I'm new but I need advice on the following if anyone can:  I have multiple discs out in back,
Brain surgery and head pain (it's not migraine, which I get alot or headache) and 3 neck surgeries to sum it up. What I'm tryin to figure out is oxycontin 80 mg 3 x day and fentanyl patch 75 mcg every 72 he's before the next patch. Here is what I can't figure out is. The oxycontin works great for my back but does not do much for my head pain, the fentanyl I take works good for my head pain but does nothing for my back . Anyone kn

[mag_pie_wendy]

I'm new but I need advice on the following if anyone can:  I have multiple discs out in back,
Brain surgery and head pain (it's not migraine, which I get alot or headache) and 3 neck surgeries to sum it up. What I'm tryin to figure out is oxycontin 80 mg 3 x day and fentanyl patch 75 mcg every 72 he's before the next patch. Here is what I can't figure out is. The oxycontin works great for my back buy does not do much for my head pain, the fentanyl I take works good for my head pain but does nothing for my back   I don't understand why oxy works for my back pain but n

[mag_pie_wendy]

I'm new but I need advice on the following if anyone can:  I have multiple discs out in back,
Brain surgery and head pain (it's not migraine, which I getal

[TaT2dFal]

I'm on 100 fent and 10 perc and its not helping my pain at all. I have serious things wrong with my back and neck that I found in mris 3 yrs ago and after 3 yrs of many narcotics not helping, physical therapy failing, at 26 yrs old I feel like I'm dieing and can't go on. I'm evn in head therapy now cuz I'm so bad ovr my pain not being relieved at all. Anyone knw what I do frm here? The only thing I haven't tried is methadone and dilotid. ;( ty ~fal

[trueboo]

I found this thread a few months after you all were discussing it, and just wanted to add my 2 cents.  I was given Fentanyl for a surgical procedure, and woke up in hysterical pain with supressed breathing.  I had a similar reaction to Morphine for a previous surgery.  In other words, inadequate pain relief for dosages given, and when they kept trying to give more to provide pain relief, all it did was suppress my respiration.  Finally, I asked for demerol because i had been given that successfully years ago for c-section, and low and behold, my pain was manageable.  I realize that my story doesnt apply to chronic pain, but the bottom line is that some meds just dont work for some people, even if they're BIG GUNS for someone else.  I didn't have a narcotic tolerance, I just dont respond to certain drugs apparently.  So just  something to think about, if a drug isnt working for you, talk to your doctor you may need another approach, and not necessarily stronger, but "different".  Wish you all the best!

[NoMoMeth4me]

Very well said Tuck!! Short and sweet and to the point!!!

I probably rambled on a bit but simply wanted to make a point. To scare someone into NOT taking Fentanyl because of their own reservations is flat out wrong. Especially when the Fentanyl is working for them.

It's a catch 22, we all at some point feel guilty about our needs for these drugs just to co-exist in our crazy world, what I believe is unwarranted, is unnecessary stress and worry being put on our plates with regard to a medicine that is is proven to be improving our quality of life.

Main point to remember which we have both stated, ANY prescription medicine can kill us, it's not just about xanax or Methadone or Fentanyl to name but a few.

As I said, our Dr's precribe these to us because they deem the benefit of the medicine far outweighs the risks and or side effects to us.

Hot topic huh?

-Brian

[Tuckamore]

Brian you made some good points, as usual.  And I have made some of the same points as others have also.

I think it is understood that none of us are experts. There are no physicians here. We all want to "help" and offer our best suggestions and opinions...and that is how they should be taken. As I have said numerous times it is always best to consult with your physician and/or pharmacists.

We have to be very careful not to give directives with medications or supplements. It is not this forums purpose to "scare" ppl.  As Brain said almost any medication can be fatal. That is especially true if you do not follow your physicians, pharmacists or the label recommendations. It is also true that even than an individual can have an unusual fatal reaction. It can happen with any drug, narcotic or not. So caution is always the best approach.    

[NoMoMeth4me]

In it's purest form mg for mg it probably is 80x stronger than morphine. Of course in the patch it's mch/hr which is a huge difference.

Normall when it is precribed, the Dr will convert what you are currently on and convert it to the equivalent strength in Fenatnyl patch. For me, and being as opiate tolerant as I was, my Dr still started me on the 25mcg patch and it was VERY discouraging because I got no relief until I got up to the 75mcg patch and was soon up to the 100mcg every 72hours. I know many change the patch at 48 hours. I'm not there yet, in fact my Dr said the insurance company won't cover it at 48hrs but I don't think that's actually the fact. You could probably find some kind of opiate conversion chart on the internet but they can be difficult to understand.

[Blujax]

ok, you scared me for a second.  I have a question.... What is the real story, I have been hearing that the fentanly patch is 100x, 80x, and even 40x stronger than morphine... which is it?then I think I read something on the internet when I did a search that the patch was equivilant to morphine.  ????!!!  

[NoMoMeth4me]

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.

[Blujax]

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

[NoMoMeth4me]

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.

[sandee1818]

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.

[Blujax]

Thanks sandee! I really appreciate it!!

[sandee1818]

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:)

[Blujax]

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

[sandee1818]

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.

[concerned621]

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..

[Tuckamore]

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.