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Thread: Fentanyl patch problems

  1. #1

    Fentanyl patch problems

    Hey all. To start with, a little info about me. I was injured oct 08. T9/T10 terrible fracture, just about severed the cord, T8-T12 fusion, now a "complete" uncomplete para. 1 month after my injury I started having bad rectal pain which felt like a wedgie. Progressively it began to get worse, feeling like I had been kicked repeatedly in the crotch and like my groin was being crushed in a vice. Docs quick to say "neuro" pain. Started neurontin. Worked all the way up to 4000mg of neurontin a day. Still no relief. Started Lyrica as well. Up to 225mg of that a day too. Because I was unwilling to accept that my pain was "neuro" pain and live with it before ruling out all other possibilities, I had begun checking all other options. Had a colonoscopy, urodynamics run, cystoscopy, sonogram, and xrays done. Have seen therapists for possible pelvic floor pain. Went to pain mgmt doc for a while who said all she could do was prescribe percoset. Now just dealing with my physiatrist. All of the testing said nothing was wrong. So far the neurontin and lyrica does not seem to make a bit of a difference in my pain. Percoset was the only thing that helped it and also gave me the energy to be active even with the pain. However after a while I became tolerant, so a month ago my doctor put me on fentanyl duragesic patchs at 25mcg. The pain relief has been astounding compared to every thing else I have tried. However, after 3 weeks I had to switch to every 48 hours instead of 72 because on the third day I would crash and pain was terrible. Now, after 36 hours I still start to crash big time ( super exhaustion, pain returning ). My doctor just wrote me a script for 50mcg patches to try and prolong the pain relief and prevent the "crash". I am wondering if anyone who has problems with the patches lasting 2 or 3 days has found that by raising the dosage mcg's that the patches provide longer lasting pain relief and they dont wear off as quickly. Has anyone else had patches start wearing off after 36 hours? If so, did switching the brand name of the patch help at all or raising the dose? So far, the patch has been a godsend when it is working and if I could at least get the patch to last for the full 48 hours it is being prescribed for I would be so much happier. Also, does anyone know of a good, breathable, clear adhesive to put over top of the patch to help keep it on. My stays on all right but every now and then it starts to become loose by the second day. Thank you for your time.

  2. #2

    fentanyl patch

    i use these also. it takes about 12 hrs.. to start working, manages the pain for 2 days. then nothing. it seems that they are working for only 2 days. the different brands they have, some are very rough on your skin. the adhesive is nasty, itchy. so i feel its a catch 22 situation. i havent been able to achieve the pain management i need. so i'm trying to find a happy medium with them. i also take vicodin.i'm thinking maybe another pain med change might be another option to look into. its frustrating. hope you'll have better luck with the increase.

  3. #3
    Hi tason,
    Sorry about your difficulties. I can relate as I have the feeling of someone stuffing a large dry wash cloth up my butt most of the time. Also experience the groin burning and pain. And I thought that was an organ of pleasure - NOT . At least post SCI.
    I too tried to rule out non-neuropathic pain causes - hemorrhoids, rectal, colon. Nothing turned up. It is neuropathic pain that many people on this forum describe including colorful descriptions like " crapping porcupines soaked in tabasco sauce". In my case , the pelvis is the epicenter of the burning but I also have it in my legs. It worsens with sitting, UTI's, exercise of what leg muscles I have, and sometimes for no reason at all.
    Here is what has helped me.
    1. Lyrica 100mg three times a day.
    2. Elavil 25 mgs at night. This little drug really helps. Yes it has a few side effects, dry mouth , dry eyes. One good side effect - sleepiness - that is why it is good to take two hours before going to bed. And I am certain it helps with the burning.
    3. Occasional narcotics. Just like you said, when I take them, I can do more, get more accomplished without the pain. It helps me get my mind and energy off thinking and coping with the pain. I have used both long acting narcs, both pills and patch, and short acting "as needed" narcs - oxycodone (OxyIR). Right now I favor the latter. Less side effects for me and the ability not to be narced out in the morning when I am usually okay. It is the afternoons and evenings that are bad and when I will reach for a narc.

    4. The knowledge and reassurance that there is nothing acutely going wrong that has to be dealt with. (other than making sure you are not having a UTI which exacerbates the burning for me.)

    5. The recognition that stress worsens neuro pain - I have no idea how and I was skeptical at first, but now believe this. This includes lack of sleep as a stress too.

    I would say that your experience with the patches lasting 2 days and not 3 is more common than not and I am shocked (pun -neuro pain) that pain doctors don't recognize this and make patients go through the agony of the 'narc roller coaster' of the med wearing off and increased pain and possibly withdrawal symptoms. My take is that if you can take meds orally, then do so and use oxycontin or methadone as long acting agents instead of the patches. Just my opinion though.

    I don't know if it is consoling to you that many others here have the exact problem you are dealing with. I think it helped me to know I am not alone and there was a place to turn and bounce treatment and coping ideas with.

  4. #4

    Thanks

    Thanks for the replies guys. Arndog, I do understand what youre saying about the narcotics making you "foggy" but I personally would rather be foggy all day and pain "free" ( if you can call it that ). I did take meds orally for a while but hated how I had 2-3 hours of "relief" and then 1 -2 hours of "crashing" before I could take it again. Also, it is nice to wake up in the morning still having some pain relief to start my day with rather than waiting to take and then for to work the percocet.
    Thanks for all the words of support. It is great to have this place to help in dealing with this way of life. Sometimes I wish I had different neuro pain like legs tingling or burning but they I remember that they would suck just as bad if not more. It just sucks feeling like someone dropkicked me in the groin and stuffed a bat up my ass every day! Im sure you can relate!

  5. #5
    Quote Originally Posted by tason28 View Post
    Hey all. To start with, a little info about me. I was injured oct 08. T9/T10 terrible fracture, just about severed the cord, T8-T12 fusion, now a "complete" uncomplete para. 1 month after my injury I started having bad rectal pain which felt like a wedgie. Progressively it began to get worse, feeling like I had been kicked repeatedly in the crotch and like my groin was being crushed in a vice. Docs quick to say "neuro" pain. Started neurontin. Worked all the way up to 4000mg of neurontin a day. Still no relief. Started Lyrica as well. Up to 225mg of that a day too. Because I was unwilling to accept that my pain was "neuro" pain and live with it before ruling out all other possibilities, I had begun checking all other options. Had a colonoscopy, urodynamics run, cystoscopy, sonogram, and xrays done. Have seen therapists for possible pelvic floor pain. Went to pain mgmt doc for a while who said all she could do was prescribe percoset. Now just dealing with my physiatrist. All of the testing said nothing was wrong. So far the neurontin and lyrica does not seem to make a bit of a difference in my pain. Percoset was the only thing that helped it and also gave me the energy to be active even with the pain. However after a while I became tolerant, so a month ago my doctor put me on fentanyl duragesic patchs at 25mcg. The pain relief has been astounding compared to every thing else I have tried. However, after 3 weeks I had to switch to every 48 hours instead of 72 because on the third day I would crash and pain was terrible. Now, after 36 hours I still start to crash big time ( super exhaustion, pain returning ). My doctor just wrote me a script for 50mcg patches to try and prolong the pain relief and prevent the "crash". I am wondering if anyone who has problems with the patches lasting 2 or 3 days has found that by raising the dosage mcg's that the patches provide longer lasting pain relief and they dont wear off as quickly. Has anyone else had patches start wearing off after 36 hours? If so, did switching the brand name of the patch help at all or raising the dose? So far, the patch has been a godsend when it is working and if I could at least get the patch to last for the full 48 hours it is being prescribed for I would be so much happier. Also, does anyone know of a good, breathable, clear adhesive to put over top of the patch to help keep it on. My stays on all right but every now and then it starts to become loose by the second day. Thank you for your time.
    Tason,
    Reading through this thread has been pretty amazing. I thought I was the only one who had ended up having to take this path. After going through the range of meds (anti-epilepsy, anti-depresant) which all stopped giving me any pain relief after a few months, I started down the track of having to rely on the deadening/numbing effect of opioids rather than attempting to stop the pain. I'm a T10-12 complete (spinal cord severed) from a sleepwalking (diving really) accident in April 2007. Although there are some similarities with our injuries, my neuro pain is different. My pain goes from my injury level down to my thighs (and to feet sometimes). The pain sensation is like my actual muscles are sunburnt rather than just my skin and the whole lot is being compressed with tight bandages or something. I also have a verrrry sharp stabbing pain in my right hip from time to time which makes me breakout in a cold sweat. Interestingly, bad episodes of pain are associated with pretty strong spasms in my legs. I've been on Durogesic patches for about 12 months now. I thought I was the only one who crashed on day 3 and had a hard time trying to convince my docs that I needed to move to a 2 day cycle. After working my way up to the max concentration (100 ug/hr) and still crashing on the third day, my docs finally agreed to allow me to move to a 2 day cycle rather than the recommended 3 day cycle. Apart from a bit of pain on day 2, which by the way is mainly controlled by the barimetric pressure (ie extreme neuro pain is brought on by a decrease in barimetric pressure to the point that I can tell the people around me when it is dropping and I'm correct 100% of the time), my main problem is getting out of bed in the morning, staying awake during the day and having the energy to do just about anything. Because of these side effects I recently tried to reduce my patch concetration to 75 ug/hr, but it was a major killer with full-on withdrawals. In short, I went back to the 100's and will now try to bring it down slowly by cutting a bit off the 100's over a few months until I get back down to 75. My main reason for doing this is because the 100's just make me too tired to do any exercise, which I know also helps a great deal with the neuro pain and general aches and pains. From my experience I would avoid going to the 100's due to the tirdness and the withdrawals that you will suffer if/when you decide to come back down off it. I don't think it will extend the time that you get relief, it just makes the relief stronger for the 1 or 2 days. It's your call based on this, we're all different. In hind-sight, I wish that I had stayed on 50 or 75 ug/hr patches and just reduced the time from 3 to 2 days (if only I had discussed it here earlier!). One other option that I keep thinking about, is why can't I just cut the 100 patch in half, use the first half on day 1 and the second half on day 2, therefore making the dosage average out over the 2 days and maybe reducing the side effects. I'm interested in anybody's thoughts on this and ANYTHING else that may help.

    Regarding a suitable material to cover the patch and make sure you get 100% contact without the patch peeling off, I use a product called Opsite Flexifix here in Australia. I buy it by the roll which is 10cm ( in) wide and 10m (10.9yd) long. This is a good size for the 100's but it's pretty expensive and you may want to get a different size depending on the patch size you end up using.

    All the best, let me know how you go. And to all here in the same boat, please let me know anything you can on this topic as all of us who have bad neuro pain know how overrated walking, and weeing and pooing without any aids is!! Just please find something to stop this damn pain so that we can get on with our lives in a nice comfy chair!

    Geoman
    "Wheelie Wanna Walk!"

  6. #6
    At least in the US, the manufacturers of the fentanyl patches will provide coverings for the patches, free of charge. At least the manufacturer of Durogesic, and also Mylan.

    You just have to call the manufacturer's customer service and give them your information. They will verifyy with your pharmacy, and then will ship the overlays to you, at no cost.

  7. #7
    Quote Originally Posted by setterlvr View Post
    At least in the US, the manufacturers of the fentanyl patches will provide coverings for the patches, free of charge. At least the manufacturer of Durogesic, and also Mylan.

    You just have to call the manufacturer's customer service and give them your information. They will verifyy with your pharmacy, and then will ship the overlays to you, at no cost.
    Thanks for the info, I'll give it a try here in Australia.
    "Wheelie Wanna Walk!"

  8. #8
    Thanks for the info Geoman. I just started the 50's last week. They help my pain incredibly to the point that the little pain i have is totally manageable. On day 1 the patch gives me so much energy that sometimes I am near manic. On day 2, the morning is still good but come 1 or 2 in the afternoon I start to have a slight return of pain and a huge drop in energy to the point around 4 or 5 that I can hardly stay awake. I talked to my doctor and pharmacist about this and they said that its possible, because my metabolism is so high to begin with, that the patchs go through me much quicker than in others. As far as cutting the patches in half and using half every day so that you always have some new relief, that is a great idea. I hadnt given that thought. Right before I got my script of 50's I wanted to go through the 25's that i had so I replaced the patch every day and my pain relief and avoidance of withdrawl were wonderful! Unfortunately I can not get patched prescribed to me for changing every day. I am going to talk to my doctor today to see about cutting my patch in half and changing every day. All in all, I know everyone says to stay away from the narcotics, but this has been the ONLY thing which has made a significant difference in my pain. When I was on 4000mg of neurontin a day + 225 of lyrica + 60mg of cymbalta + 80 mg of baclofen, and no narcotics, my pain was horrendous. Adding percocet to the mix finally provided me some relief but the effect wore off after 3 hours and also I had terrible pain in the morning until my morning dose kicked in. So until I find some treatable cause for the pain ( which after reading my initial post you can see i have definetly been trying ) I am going to naturally stick with whatever medication or treatment helps it. And so far the patch is it! I just make sure to up my colace dosages and eat more fiber, drink more water, and keep a close eye on my bowel program to counteract the constipating effect of the patch. If you have any luck cutting your patches and taking daily please keep me updated. Thanks

  9. #9
    Just called Mylan direct and talked with them for a while. They said it is definetly NOT ok to cut the patches. They said that by cutting the patches you disturb the gel in the adhesive and can cause a lot of the medicine to be dispensed very quickly leading to overdose. Oh well. That would have probably been a great solution for me to get relief for the full 2 days. I guess I'll just keep riding the roller coaster They said that if the patch doesnt last 2 days I should increase the dose but that is what I just did and it didnt help. I don't think I could handle another dose increase. Well Ill keep looking!

  10. #10
    Senior Member
    Join Date
    Mar 2006
    Location
    connecticut
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    8,272
    Yes, DON'T cut them, it will effect the med release.

    If using the 25, and changing every day works better than using the 50, and changing every 2, I would think it is a good thought. See if your doc will agree, b/c it sounds like you are getting TOO much of the 50s on day 1.
    T7-8 since Feb 2005

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