Those of you on Fentanyl, question

So for those of you that are on fentanyl, can you tell me the path you took that lead you there? How many meds you tried previously, why did your doctor start you on fentanyl?

I've read through dozens of threads about the effects of the drug but don't see anything detailed about people getting up to the level of needing Fent.

I'm living with 8-9 all day every day and it's just EXPLETIVE terrible. :( PM doc appt tomorrow. I'm scared of fentanyl but it might be time to try it. Current meds = 20 mg Opana ER 2x / day and 15 mg of morphine 3x / day.

I've been on Fentanyl for years. I want to say I was on 15mg of oxycodone along with valium and baclofen at night. I started at 25mcg of Fentanyl as my long-acting med. After numerous surgeries and a very unpredictable stomach, I'm now taking 100mcg of Fentanyl. Told my Dr that I wasn't going on a higher dose.

Not sure whether you are talking about the fentanyl patches or IR fentanyl (Actiq, Fentora, Abstral, Lazanda). They didn't have the patches available when I first started having pain, or that may have been an option earlier on for me (although I have serious issues with delivery consistency with the patches, so who knows?). As far as IR fentanyl, I probably went through at least a couple dozen alternatives before finding that IR fentanyl was the only drug that works for me without causing life-threatening side effects. If you're not using it "on-label" (for cancer -- or HIV), I'd try everything else on the market before you try IR fentanyl because you will not find an insurance company that will cover it for other causes of pain and even with discount coupons, it is horribly, horribly expensive.

If you're talking about the patches, I think they generally want you to have tried a couple other options first. Beyond that, I was glad my current pain specialist started me out lower on the patch. My prior neuro had tried a higher "equivalent" dose of them when trying to switch me over to the patches from something else & I ended up blacking out in the shower (it wasn't even that hot!). It's a weird thing that happens in a certain percentage of patients with the fentanyl patches -- they don't deliver consistent amounts of the medication & sometimes you don't get enough to control pain while other times my head would be swimming due to a medical overdose. It's not super common, but it is now well documented in peer-reviewed journals as something that happens in a small minority of patients. For that reason, I always caution people to work with their doctors to follow the recommended titration schedule the manufacturer provides. It may mean up to a couple weeks of increased pain, but trust me when I say that's way better than having to have a family member fish your nekid body out of the bathroom.

You are supposed to either be on the fentanyl patches or some other long-acting opioid if you are going to take IR fentanyl. I also wanted to point out that while IR fentanyl is beneficial in the sense that it kicks in extremely quickly, it also only lasts for a couple of hours. It's wonderful is you are getting 3-4 episodes of Break Through pain per day that are up at an 8-9. It's pretty crappy if your pain is a constant 8-9 all day long because you only are allotted 4 doses per day, meaning there are hours a day that you still lie there screaming in pain. Fentanyl has a reputation of being far stronger than any other medication, but the fact that it's prescribed in MIRCOgrams instead of MILLIgrams completely negates that. Fentanyl is ultra-fast acting & ultra-short acting. Unless you are getting your scripts from a mad scientist, it won't be any stronger than other medications on the market. Honestly, if I didn't get such a bad reaction to it, I'd rather be on Dilaudid than fentanyl. The pain relief from Dilaudid lasts nearly twice as long. It's still considered short-acting (although I think I read somewhere there is now a long-acting formulation of hydromorphone), but will last 4-5 hours instead of 2-3 like fentanyl. And it's covered by most insurance -- but even when it's not, it's like 1/10th the price of generic Actiq. Best wishes!

I'm very sorry you are in so much pain. I hope things start looking up for you soon!

BTL, since the drs are thinking possibly you have this nerve entrapment, is there a reason you have not been tried on any of the nerve pain meds? There are several out there that are the newer ones, a couple of the older stand by meds is Amitriptiline & Nortriptiline. Some people have the side effects to deal with for a couple of weeks, then they go away. None of the nerve meds give instant relief because you have to be titrated up in dosage to get to the therapeutic level which can take up to 2 months. Many times patients will think the meds are not working until they go off of them only to find out they were helping.

Narcotics have little to no effect on nerve pain. It does not matter how much the dose is increased either, its been proven there in little pain relief with narcotics & nerve pain. Considering you are young something you need to keep in mind when it comes to pain meds, increasing the dosages can land you at the proverbial brick wall. You can easily run out of pain meds & dosages that will work on your pain & then what will you do?

Fentanyl you should be somewhat scared of, it is a very strong medication & just like any other medication used long term you have to keep increasing the dosage. Usually folks get put on it when all the other ER fail to work. They claim they have improved it so that it doesn't dump the meds if a person gets over heated, but we have seen too many people come through here that got over heated either from hot showers, hot baths or being outside in the heat & the patch dumped too much medication. Then by day 3 they had no meds left in the patch & were going through WD's which was not much fun. This very thing happened to me when on Fentanyl.

Anyway, I wanted to ask about the nerve meds because I could not remember if you were ever put on any of those meds.

Hey BTL...I hate to comment because my experience is not necessarily common.  I had the Fent patch in 2005-06.  The relief was outstanding, but the patch pooped out at 48 hours.  I was in horrific WD for the 3rd day.  Back then, my PM team would not prescribe 48 hour dosing.  I stopped PM altogether because IMO the bad outweighed the good.  Now PMs will prescribe 48 hour dosing, if deemed necessary.

Fast forward to now...The first day I consulted with my PM, he recommended Fent patch without hesitation.  My documented medical history is the source of nightmares.  I have mal-absorption issues that interfere with every bodily function.  Therefore, transdermal delivery is optimal.  I continue to resist, for now.  The patches are expensive for me, without prescription coverage, as I would require 15 per month.  I am also "painfully" (pun intended) aware that once I reach that step on the ladder...like SD says...What will I (you) do IF that stops working? 

I'm afraid for you and I'm afraid for me.  I LONG for some degree of RELIEF from constant agonizing pain.  But I KNOW I must take it slow...ONE MED at a time...in order to find MY answers.  There is no quick fix.  I still believe (yes, I am repeating) that your body has not recovered from major surgery 6? months ago.  Perhaps something went awry...causing your pain, whether nerve or disease-related.  I wish that you could find (see) a specialist for endo/adeno. 

Whatever you decide, I wish you well.  Just PLEASE be cautious.

HUGS~~Dixie    

If it's just the patches, I wouldn't really be scared of fentanyl. I know there is a lot of misinformation out there about how "strong" it is & how it's "more addicting" than other drugs, but both of those statements are only partially true.

Milligram per milligram, fentanyl is stronger, but that's why it's prescribed in micrograms. If you aren't an addict (and if you're currently responsibly using Opana & morphine, I assume the docs have already ruled out you being an addict), it doesn't matter how quickly it forms an addictive relationship with the user because that doesn't apply to you. The nice thing about fentanyl is that it is the easiest drug to withdraw from. The withdrawals, while still very unpleasant, only last for 3 days.

I do not think that fentanyl, when used responsibly, should provoke any more fear than other opioid medications. I have been on it for nearly a decade now with no dose increase (other than a few short-term increases that were reversed after a couple months). Fentanyl is a great product because it breaks down so quickly that it has little to no impact on liver & kidneys. The only thing you really need to watch for is breathing issues when you first start on it, or just after a dose increase. Once you develop a tolerance to the side effects, you should be fine.

I'm all for responsible fear of prescription opioids, including fentanyl, but the demonization of fentanyl more than any other drug makes no sense to me. It is dangerous because it kicks in so quickly that getting help for an overdose is trickier. So don't take more of it than prescribed, no matter how much pain you're in. And definitely don't leave it somewhere that a young child could get hold of it!

I have DDD (spondylosis of neck & low back) among other things (radiating nerve pain, bone spur, scoliosis, etc) and fought the idea of fentanyl for so long because I bought into a lot of the misconceptions. I got to the point where I couldn't even walk. I was bedridden and got life-threatening respiratory infections and horrible infected bed sores. I was severely underweight & could barely function. I had to spend a week or more in the hospital every 6-8 weeks. In spite of that, I still had family telling me I needed to avoid prescription pain medicine at all costs, and some doctors telling me the same. I was fortunate one visit to land myself in the cancer wing due to how loud I was screaming in pain. I got a great GP who ran a huge battery of tests. Once my PM got the pain well enough under control, the GP came in and spoke very frankly with me about my test results. He told me how nearly all the other patients in that wing would give anything to be in my place. That at that point I had roughly the same life expectancy as they did (12-24 months), but that I could likely extend that by well over a decade if I took the medication my PM prescribed. Because I followed that advice, I have largely stayed out of the hospital since that time, returned to work full time & was able to live independently and care for myself. Is fentanyl perfect? No, no drug is. Do I still live with a pain level of 6+ pretty much every day? You bet! But I am healthy & usually pretty happy. I can do things again & I am very, very grateful for that.

If your doctor is recommending it, I think a cautious trial might well be warranted. Feel better soon!

I was on fentanyl at one point after having been tried on hydrocodone, oxycodone, oxycontin, and hydromorphone previously (plus a whole slew of non-opioid medications). However, I was only on it for maybe 3 mo -- long enough to give it a thorough trial at several doses and decide that it was not very effective against my pain, and I did NOT like it at all.

Like someone else mentioned, I also got an itchy, painful rash from the patches -- presumably a mild contact allergy, probably to whatever glue or polymer they use to stick the patch to your skin. It wasn't so bad at first, but the more times I applied a patch to a previously affected area, the worse it got (and I am pretty thin, so there weren't many options for discrete patch placement). It actually got so bad that the edges of the patches would dig into my inflamed skin and chafe it away due to rubbing of the edges of the patch against my skin when I moved. By the time I stopped using them, I actually had scars that outlined exactly where the patches were placed. The scars eventually faded (thank goodness), but it took several months or more.

Besides the contact allergy issue, and the fact that I did not get much relief from the fentanyl, I also didn't like the patch because I was constantly afraid of the overheating issue. I never had a problem. However, I was on the patches during the summer and living in a dorm room with no AC. Plus, I always sleep on a heated mattress pad because otherwise I freeze at night (regardless of the season, or the number of blankets or layers I wear), and I am prone to really bad night sweats. All things that could elevate my body temperature significantly, and cause an unintentional OD. That thought terrified me. So even though I never experienced a problem, I lived in constant fear that at some point I would. Maybe that was silly, but it was just one more thing that I didn't need on my plate.

One other final thing that I will mention is that fentanyl was the ONLY medication that I have ever taken where I have experienced withdrawals as I tapered off of it. We went as slowly as we could, but because the patches are only made in certain sizes, you are somewhat limited in the size of the "jumps" in dosage that you can make. So despite making the smallest downward jump possible after 3 x 48 hr cycles at that dosage, I still experienced withdrawal symptoms for 2 - 3 days after each jump we made. And that just made for a miserable few weeks!

Fentanyl certainly does wonders for some people, and for your sake, I hope that you are one of them. But personally, I did not have a good experience with it. And I would never go on the patch again.

Skeye

PS - Forgot to mention that the main reason my doc tried me on fentanyl was because I have a genetic liver abnormality that affects my ability to properly metabolize many medications, including most pain medications. Historically, I had had very little success with both oral opiate and non-opiate pain medications. So my doc wanted to try me on the fentanyl because the transdermal delivery system bypasses the liver completely. And therefore, theoretically, it should not be affected by my liver condition. So the hope was that the fentanyl would work better for me than oral medications. However, as you read above, that was sadly not the case.

Post Edited (skeye) : 1/1/2015 12:27:46 AM (GMT-7)

Hi Backtolife,

I was on IR Dilaudid six times daily at 16mg per dose. So 96mg/day. I said to my doctor that I was getting sick of having to take so many pills and be dependant in carrying around a pill bottle everywhere I went, and asked what other options there were for longer lasting medication and he went over various types such as Duragesic (fentanyl), Hydromorph Contin, Oxycodone CR, etc. and asked me which I would prefer to try first. I liked the sound of the patch since it was q3days and thought that would greatly reduce the number of pills I would be taking while still getting the pain relief so decided to go for it. It was difficult at first as I had side effects like nausea and sedation, however after about a week these all went away and the patch has been working great. I still take Dilaudid for breakthrough pain but only once or twice daily now which is a marked improvement.

The greatest thing I've found about the patch is that it is much more convenient - I have to carry around far fewer pills now and once I apply a new patch I can forget about it for 2 or 3 days which is great.

Good luck with whatever you do decide to do.

Wishing you many pain free days ahead.

Cheers,
-KP

@Skeye,
I am so sorry to hear that you haven't reached a more bearable pain level, perhaps your future plans will help. I am on the fentanylIR, Fentora, 600 MCG @ 5/day on top of 8 30mg Oxycodone and have managed to bring my level down to 3-4 which is heaven.

I asked about the brand as we get so many requests for a patch that won't cause a rash. The Watsons did rash me up but after about 6 months my skin developed an immunity, I guess, and I stuck, lol, with them for a couple of years. Best of luck and thanks for the reply, . . . Q