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Anyone take Fentora for noncancer related pain? Can it still be prescribed off label?

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  • Anyone take Fentora for noncancer related pain? Can it still be prescribed off label?

    Hello everyone,
    Just wondering if anyone in the group takes Fentora for noncancer related pain? Last time I took it was 2013 when my doctor was able to write off label prescriptions for it but then my insurance stopped covering it. Also, with the many fentanyl related deaths lately, it's even harder to get the medication. Thing is, I have new prescription drug insurance and Fentora is in the formulary. I'm waiting to hear back from my Dr. about getting a prescription for it but thought I'd also post here to see if others have Fentora prescribed to them? I was taking Fentora to treat breakthrough neuropathic pain. FYI, I have an intrathecal pump which has baclofen and hydromorphone. The baclofen helps the spasms tremendously but the hydromorphone isn't doing much for the pain, I still get a lot of breakthrough pain. I've tried many different oral medications to treat the breakthrough pain over the years (OxyContin, oxycodone etc.) but the Fentora was the only one that really worked.
    Thanks in advance for any info you can provide!
    Dan G. in CT

  • #2
    Maybe try fentanyl patch , I?ve been on it 10 years or since before it went generic. Generic I found to dissipate within 48 hours like clockwork instead of the 72 hours it is supposed to be .
    I tried the Fentora after I tried Actiq. Actiq will kill your teeth , and the Fentora is a tiny quick dissolve that gets put under your tongue; I did not find relief, and there?s a great danger of abuse because of that so i gave it up after one week.
    I?ve been on the hundred microgram patch and oxy for breakthrough And I stick to dosage control without variance In the slightest bit. The doctor trusts me And with all the Stigma these days I would never break that trust.


    • #3
      Thanks for the reply Tim. I did try the fentanyl patch but unfortunately, it messed with my breathing. My doctor then put me on Actiq for a little over a year before switching to Fentora. How long ago was it when you last took the Actiq? Thanks again.
      Dan G. in CT


      • #4
        Last edited by Moongazr; 05-17-2019, 10:32 AM.


        • #5
          quad, if I can help you by reflecting back on my own struggles I'm happy to do so. there seems like a limited , thankfully, population of us sci that have to contend with high level pain as well as our paralysis.
          Beginning in my first 6 mos. I was treated using Actiq, as off-label off course, for extreme limb pain that did not respond to the usual phys rehab, baclofin, neurontin, gabapentin, lyrica, opioid, psych-SSRI-type etc, and we tried everything else tooo......spinal stimulators, accupuncture, old-school weed,.....only to eventually learn that pain management was just as it suggests;....MANAGE TO LIVE WITH PAIN.
          Holy shoot, if only it didn't literally shut you 'put you in a dark, quiet corner, blanket wrapped around you, rocking back and forth, screaming mad crazy' kind of pain.
          I traveled halfway around the damned globe seeking relief yes, I was on Actiq, to limited relief, usually after a morning BM to ramp down the painful rectal spasms brought on by supposits, and digital stimming, and then as the pained peaked other times of the day, until the limited relief stopped being worth the constipation issues, and besides, it became too easy for caregivers to throw them at me when they watched me wretch in pain, claiming they couldn't witness my suffering without trying to help]?].
          so before I ended up over-using I tapered myself off of it, substituting the transdermal for the pop. somewhere in between I was put on the fentora....recognizing that truly was for palliative care.
          the patch is safer, albeit not 72hr in generic copy.
          steer clear of Actiq.


          • #6
            Yup I have had the best quality of life like my doctor says he tries to get for his patients. 1999 accident C-5 several surges tried every medication and to many to list trips to ER. Then Doctor found Fentora and Actiq with wearing Duragesic patch along with other misc meds. Best quality of life until 2019. Actiq and Fentora denied after insurance paid after the usual prior auths every year to save on a few weeks of paying. Then this year with the Fentanyl issues now they will not pay. They paid for several years and have the proof to show it. Now even having a supplemental plan paying $160.00 a month using AARP who uses Optum RX hoping it was and is on the formula. Yes it is written off script like other medications I am on. Why are only my expensive medications questioned. So Jan I was denied like usual though needed my medication. The representative said I could pay and get reimbursed as they have been paying for years I charged it $900.00 Appeal 1, 2, 3 failed hearing with judge went nowhere. Now I maxed out my credit card and possibly have to admit defeat for the 1st time in 20 years and go back from being a productive citizen to one that will be spending my days in the hospital, bed in pain with painful spasms. Well thats the trade so the insurance can make more money.
            I worked, volunteered, did all my chores and shopping, though doesn't matter someone needs to add to there bonus.

            So your questioned getting the script paid for off script good luck.

            I went to the furthest appeal. Hearing with a Judge who is probably looking to retire following just what the FDA wrote instead of looking at the history of them paying all the years for my medication and never going to the ER or have a hospital stay in ten years. Impressive I would say that bought me some good time raising my son. Insurance doesn't have to pay though they pay for my inexpensive medications. Imagine if the pharmaceutical companies had to do individual study's for every pain issue? Cancer pain verse spinal pain It wont happen isnt that what doctors do prescribe medications without getting involved. Thats what the FDA let doctors do unless cost is involved. Now my only option for my medication to get filled is that I get cancer doesnt matter what kind I just need a cancer code. Well there is a issue there goes quality of life because even though I would get my medication that got my quality of life I loose it with another disease. What a screwed up system. Anyone have ideas I would be happy to join the fight to get patients there meds I just cant do it alone.At this point I have no idea what to do buy from China????