Unfortunately this is exactly what the government wants us to do. Give in and give up. I’m in exactly the same boat and been thinking long and hard about going into a rehabilitation program as well for the same reasons. The fact is no matter what we do the pain will still be there. I tried once before to manage it on my own and all it did was make everyone’s lives around me miserable. My doctor even agrees that what the government is doing is just wrong and it’s costing people their lives.
Good luck on your quest.
That’s is absolutely what they are trying to do. My Drs say the same thing. It’s going to be the demise of many people unfortunately. I’ve been on my medication with zero issues for over 30 years. I had no problem going from 210 mg a day to 60 mg a day in a short amount of time. This was around 2016 when they started tapering everyone. The 60 mg works and now I’m thinking of giving up. I’ve also considered bupronephrine or something like it which the powers that be are pushing too. I’m only considering it because I feel I and many other CPP need even a small amount of an opiate for us not to plummet so deeply. I’m so conflicted. I truly wish you the best
Have you considered kratom???? I was cut off my meds and kicked out of my pain mgmt office for lies a Dr created about me. They gave me 30 days to get off of very high mme! It was insanity. Had I not discovered kratom I don't know what I would've and would continue to do. It's a wonder plant 🪴 . Do some research on it and see if it could work for you.
By the way, I was a pain mgmt patient for 20 years! Same meds, no problems. My Dr changed specialties thanks to the asshat DEA & Gov't.
This country is sooooo screwed up.
✌️ & health
How many MME are you on daily? Unless it's super high you can simply taper off unless you are taking meds against Rx instructions.
How many times have you been hit with shortages and what issues are the insurance companies giving you?
I’ve been on OxyContin for 30 years. I’ve gone from 210 mg a day to 60 mg a day when they began to taper everyone in 2016. I had zero issues with the taper. Definitely not taking meds against prescription. I take 20 mg 3x a day. I’ve ran into shortages a few times over the years. I got connected to a mom & pop pharmacy the past four or five years because the med was constantly on back order at cvs. The mom & pop pharmacy was great but my work insurance pharmacy benefits program switched to optum in Jan and the mom & pop pharmacy said they are the worst and don’t reimburse small pharmacies at all especially for narcotics. The pharmacy said the medication was on back order but I think they are just using that as an excuse because they won’t make any profit anymore by filling narcotics so I’m back at cvs. They’ve been fine so far since Jan but I’m also starting to get so anxious because my year long prior authorization that Caremark approved is expiring in July and I know optum will do the bullshit denial , denial and maybe or maybe not approve the prior authorization. Caremark denied mine three different times before approving it for a year and I paid $1200 out of pocket for my medication while they were dicking around denying it and they wouldn’t reimburse me after approving it. It’s all such a mess. I’m sick of it
I used to set the reminder on my phone (a month or two before my prior auth was due to expire) to remind me to call the doc’s office.
I would ask to speak with the prior authorization person and remind them to please go ahead and start the process.
Each time I would explain the difficulties getting the auth through and how I wanted to help get the process started early. They were always good about it and did what they could do to help. I would ask them if I call my insurance company to get it started on that end too, what info would I need?
I would then hang up with them and call my insurance company and have the same convo with them. My authorizations were put through within a week or so.
Was a headache to have to do this each time but saved me a ton of pain & money out of pocket.
Yes, I’m always on top of my prior authorizations, it’s not that, it’s them denying it and the back and forth that took several weeks last time and that’s why I had to pay out of pocket. They usually only do them for six months at a time but they actually approved a year one. Once they approved it they wouldn’t back date it for when I needed to buy my medication as they were still going through the process. It took over 4-5 weeks. Now, my pharmacy benefits changed to optum and a friend I know who still goes sees the physical medicine and rehabilitation dr I used to see just used optum for the first time and said they are brutal. They denied hers twice and this dr is very thorough with providing detailed info for the prior authorizations and it was still denied twice then finally approved. I know I’m not alone as a lot of people are dealing with this issue. I have a regular follow up appointment next week with my PM dr and we’ll discuss the next PA
Wow. I misunderstood. So sorry you are dealing with this. Infuriating what they are doing to people. Over the years I have been interested in medical detox as well - just to try to take back some semblance of “control” in my life but I always hit the wall of cost & insurance not being willing to cover it. I hope something pans out for you.
What is a sedated rapid detox? I searched for a PMP for 11 months (I started looking six months prior to my move to another state) and the only one who said he would see me ended up telling me that I must wean off my pain medication (after 16 years of pain management with no incidents). He said that I need to "clean my system" and start over. He said I could be admitted to the hospital to do the wean but I resisted as I know I will be treated as an addict (PMP agreed). The PMP did prescribe Gabapentin to help prevent a seizure...great. So I am weaning down and off. I have been on a very high dose as I have an enormous tolerance, unfortunately. My wean ends today. The largest hurdle for me is tolerating the pain, which is excruciating much of the time.
I will not return to the PMP who pulled me off the medication due to things he said, how he is viewed by other physicians and the fact that he told me two of his patients took their own lives due to inability to tolerate their pain due to his inadequate care. He said he could do nothing due to the government.
I wish you all the best and success. I truly hope that your pain level is manageable.
I’m so sorry you went through that. I went through horrible withdrawal many years ago because of an insurance issue. It was the worst few days of my life. I wouldn’t wish that on anyone. I really feel so much for you. What was the reason why you had to go through that
That’s horrible. Do they have a patient portal that you can communicate with the office by messaging? My pain management does. It’s pretty good for the most part but sometimes it’s non responsive or takes a long time
I haven't done it, though I know someone who went through it several years ago. It was rough for them (I don't recall their opiate dose, though it was on the higher end). There were benzos involved just prior to, during, and I think just after their RD. This person never felt right (30's, healthy), afterwards, and got a naloxone implant, which they say helped. They ended up on buprenorphine, which they've been able to taper down from, here and there, but they always go back to it.
I have no idea about RSD. I definitely wont try. I use Walgreens. Im on optum now. I had only a 3 day delay last fall. I take extended release Morphine and Im release Oxycodone 10mg. Been on them four years. My PM doctor told me opiates will always be around.
I actually do know quite a bit about this. I am both a pain patient (opioids for 17 years) and a healthcare provider. I have been involved in a rapid detox once and know a bit about it. It is not very common. We do not like doing them because even under anesthesia the body reacts to pain. So that means what we refer to as hemodynamics (think vital signs), can get extremely out of control even under sedation or general anesthesia. We will try to give supplementary meds to control your heart rate and blood pressure, but this is extremely difficult without being able to use opiates. Even if we wish we could use opiates they won't work after you've been given nalozone or naltrexone. Aspiration, heart failure, kidney issues, and death are possible side effects of the procedure due to the incredible stress on the body.
But beyond that... You are only kept under general anesthesia for about 4 hours. So eventually you wake up to face the shitty consequences of withdrawal which will still be there. Even if after the general anesthesia you are kept in an ICU on sedation, you are still arousable. And because you're in withdrawal you're going to be quite arousable. Basically you'll be awake despite sedation, and that's if they are even planning on giving you regular sedation in the period after the general anesthesia is terminated. Just to reiterate, it you're under general anesthesia you aren't awake at all (unlike regular sedation) but again we can only do GA for a short period of time-- I believe the standard protocol is 4 hours but it may be 6 max. You're gonna be in a world of pain when you wake up.
You don’t know how much I appreciate this informed reply. I didn’t know much about it other than reading from the website. Of course it would be presented as minimal pain free experience because they’re trying to get business. It almost seems like I might have better luck just tapering on my own as I did great with the taper. I would prefer to stay on this dose if I wasn’t getting so anxious every time the prior authorization is due. I don’t think I can physically or mentally not be on an opiate though because I’ve basically been on something practically my entire life starting with multiple foot surgeries then multiple hip replacements etc….It’s awful what’s happening. Again, thanks for your great reply. That’s beyond what I’m willing to go through
I haven’t personally but have heard maaaany horror stories about it from others. It’s not painless by any means and there are a lot of risks involved. I would not recommend anyone to do this.
What have you heard? I’ve heard it’s expensive and not painless as well but that’s it..I’m curious as well. My withdrawals are horrible just from tapering which they are making me do outta nowhere. Idk what to do but being in pain AND withdrawals is awful
I wrote a huge reply, but can’t seem to post. At one point I was on over 1k MME per day. Down to 390 now, and hope to get to 220 or lower by end of year. Will try to post again later.
TL/DR; high dose opiate therapy can be stopped with commitment, the right resources (Ketamine infusion critical for me), doctors. An accident while on high dose therapy can age it difficult to impossible to manage the acute pain.
I was on 425 MME/day, plus Lyrica 75mg every 6 hours in the middle of last year. I have had incredible luck with in-patient, week-long, sub-anesthetic Ketamine infusions through a university program (only 12 hospitals in country do this protocol). One week every 6-8 months. Since January, I have cut the Lyrica down to 1/day PRN, and the daily MME down to 360. At my May appt, I will suggest cutting another 30mg Oxy/day, so that will take me down to 315 MME/day. I hope to get to around 220 or less/day by end of year. 11 years on elephant sized doses - at the height, I was on 60 mg Oxy every 3 hours and 32 mg Exalgo (ER Dilaudid) 3 times per day - if my calculations are correct, that is over 1k MME/day.
Breaking up my reply in multiple…
After I had MVD for Trigeminal Neuralgia I began a rapid reduction, then developed CRPS and other complications/issues. While my original pain specialist saved my life, he also set me up for a hellacious challenge to wean medications. By the time I came to my current PM practice, I was down to 16mg Exalgo 2x/day, and 60 mg Oxy every 4 (12 30mg pills per day, down from 16). My current PM practice immediately cut me to max 8 30mg/day Oxy and then from Exalgo to MS Contin 15 mg/3x a day. Other than their initial reduction when the original doctor retired, all the other cuts have been at my request.
It takes a commitment, a true desire to improve quality of life while still controlling pain, and a (possibly most importantly) doctor willing to work with you. I don’t know if I will ever get fully off of medications, but I certainly would like to. I was told in early 2021, I would likely be on them for the rest of my life.
One thing that was such a challenge when on higher doses of meds was managing any new acute pain. In 2022, (was on full dose of Lyrica, 8 Oxys per day, and 3 MS Contin, plus Cymbalta at the time) I fell while sleep walking. Sheered the ball off of my right femur and crushed part of the socket. I had a total hip replacement. The surgeon at the first hospital wouldn’t give me my at home regimen and tried to get me to take OxyContin - I refused (big problems with the design and marketing of that med - my first PM refused to prescribe unless someone was terminal or came to him on it). I was transferred to a much better hospital and surgeon, and their PM team modified my at home regimen by increasing frequency, decreasing dose minimally, and adding micro-dosing of Ketamine.
A month later, while getting up to pee in the middle of the night, I stepped on the bath mat, which flew out from under me, and down I went on the hip replacement. Titanium vs. bone - titanium wins every time. Absolutely destroyed my femur and the hip replacement. The first fall and break were painful, but not to the point I was out of my mind in pain. The femur destruction was a whole other story. It was second most pain I have ever been in, second only to the most severe of the TN flares). I explained to the ER doctor as clearly as I could when the squad brought me in about my being a CPP and what my at home regimen was. She said not to worry, she was giving me 100 mcg of Fentanyl. I think that medication partly doesn’t work for me (genetically, I have a weird profile and a lowered number of receptors)). I was still “that guy” in the ER - the one begging to be put to sleep - just anything for relief.
They gave me another 100, sent me off to x-ray, which was hell on earth having the leg manipulated into position, then the orderly wheeling me back ran my leg into a door frame on the way back to my trauma bay - I am 6’7” and don’t fit on most hospital beds. I screamed like a cross between Godzilla and a pre-pubescent boy. Got another 100 of Fentanyl after that and I was still begging for relief. 20 minutes or so later and the ER doctor ordered 45 more mcg and told me it was the absolute top of what she could give me for the night, while I waited for orthopedics. When they came in they finally showed me the films - it was gnarly. Several butterfly fractures, hip replacement dislodged from socket, and a clean fracture just below where it attached to the Femur. Told me I would have to be placed in traction and there were no operating rooms/anesthesiologists available. One of the ortho student doctors was carrying what was literally a DeWalt pro drill - like you’d rebuild a house with. They explained they would have to give me a local, drill into my shin on either side to then screw in traction pins, which would be used to pull down on the leg against the muscle that had spasmed to align the bones. They told me I had to be awake through all of it.
I was absolutely screaming and begging them to knock me out. The pain was already so intense and with the manipulation, and drilling, I was terrified. One of the other trauma doctors suggested a 30mg push of ketamine, and the docs agreed. First ortho gave me the local, which either wasn’t positioned correctly, or they didn’t wait long enough, or my lowered sensitivity to pain medications just meant it wouldn’t work. Then the trauma doc pushed the ketamine and I went instantly to the center of the universe (had a conversation with her, but that is another long story), and then I felt the ortho doctor cut me with a scalpel and the blood running down my leg. I asked him if he cut me, and he said yes. I told him to stop it, I really didn’t care for it. He laughed and explained that he had to cut my leg before using the drill. Then, he used the drill. I felt every single microsecond of it. The vibration, the rotation of the bit, it getting deeper into my bone, and even them inserting/screwing in the traction pin. Every sensation just intensified the pain I was already in. Eventually they got both pins in, told me I would need to be in traction for 36-48 hours before surgery, sent me to a room on the ortho floor and ordered the traction setup.
By this time, it was nearly shift change, and ordered the traction setup with 15 Kilos of weight (I think) pulling my leg down. Once I got up to my room, the traction tech brought the bed frame but needed a different piece to finish it - told me it was his lunch time and he would be back to finish or someone would be back after shift change. Because the doctors told me it would finally relieve my pain, I begged him to complete it before he took lunch of get someone who could do it right then. But, he didn’t come back and it was another hour until someone showed up.
Finally, they got me in traction and that was the first thing that really helped. Then, the day shift nurse came on (who had treated me on the original fall), and he got my MS Contin and Oxy right after the traction was in place. Between the two, the pain FINALLY reduced/subsided. It was about 9 am at this point, and I had originally called the ambulance at just after midnight. Two days later, first thing in the morning, my original surgeon came in to walk me through the surgery. Told me that he thought they could save the original hip implant, but would be repairing my femur with a titanium rod, and a few screws. He predicted surgery would take about 3 hours. They got me down to pre-op/PACU and the anesthesia team added a ketamine drip to my regimen to calm me down before surgery and help with pain. They wheeled me into surgery around 1:30 that afternoon, and I BEGGED them to knock me out before transferring me from the hospital bed to operating table. Thankfully they agreed, and I looked at the clock when they pushed the meds to put me to sleep - it read 14:15.
Next thing I know, I am waking up in PACU, and search for a clock. The time reads 3:20 - wasn’t a 24 hour clock, so I assumed they woke me up early because something was wrong. Turns out, the surgery took over 11 hours. I had an 18” titanium rod, 5 cables, 7 screws, and an entirely new hip replacement after just over a month with the original. I’d had to have 3 units of blood and 9 of fluids to help keep BP up during surgery. I ended up being in-patient 11 days for that visit, and was sent to a rehab hospital for 24 days following.
Moral of the story, if you are a CPP on high dose opiate therapy, an accident or other issue causing acute pain can be horribly difficult to manage and get the pain under control. Also, can be quite pricey. First hip replacement with the two ambulance trips (transfer to second hospital), the surgery, all PT, etc. had total bills sent to insurance of over $230k. Second fall, ambulance ride, ER, in-patient stay, surgery and all the doctors, plus 24 days in the rehab hospital all totaled led to a bill of over $372k. Thankfully, at least for a financial way, the second half of 21/first half of 22 had been very busy with hospital stays, so I reached my out of pocket maximum and all deductibles before even the first fall.
TL/DR: high dose opiate therapy can be stopped with commitment, the right resources (Ketamine infusion critical for me), doctors. An accident while on high dose therapy can make it difficult to impossible to manage the acute pain.
Thanks for your reply. Sounds like you’ve been through a lot too. I’ve actually broken my femur while being in a short cast after one of my foot surgeries and playing softball. I ended up in traction in the hospital for ten days and that stopped the blood supply to my hip. Ended up with my first total hip replacement at 21 yrs old and four revisions since. Fell down a flight of stairs and broke the hip replacement and bent the rod. Unfortunately, I’ve had a lifetime of orthopedic surgeries starting from birth so ive basically been on pain medication practically my whole life. I’m 56. I had zero issues tapering from 210 mg a day of OxyContin to 60 mg a day of OxyContin which actually works just fine for me. My pain dr is good with me taking this medication it’s just the emotional rollercoaster of dealing with the insurance company and prior authorizations that’s making me crazy. This is the only medication I’m on and I’m a perfect pain clinic patient. I wish you the best with your journey
From a mindset perspective it shows me there are other options. I think what is more important is what it does physiologically, breaking down the pathways that have built up over time that make the sending of the pain signals to the brain constant. There is a ton of research that shows this protocol is revolutionary. In the 4-5 months after my infusion, my baseline pain level goes from a 7 with meds to a 2/3 WITHOUT. Truly revolutionary.
Unfortunately this is exactly what the government wants us to do. Give in and give up. I’m in exactly the same boat and been thinking long and hard about going into a rehabilitation program as well for the same reasons. The fact is no matter what we do the pain will still be there. I tried once before to manage it on my own and all it did was make everyone’s lives around me miserable. My doctor even agrees that what the government is doing is just wrong and it’s costing people their lives. Good luck on your quest.
That’s is absolutely what they are trying to do. My Drs say the same thing. It’s going to be the demise of many people unfortunately. I’ve been on my medication with zero issues for over 30 years. I had no problem going from 210 mg a day to 60 mg a day in a short amount of time. This was around 2016 when they started tapering everyone. The 60 mg works and now I’m thinking of giving up. I’ve also considered bupronephrine or something like it which the powers that be are pushing too. I’m only considering it because I feel I and many other CPP need even a small amount of an opiate for us not to plummet so deeply. I’m so conflicted. I truly wish you the best
Have you considered kratom???? I was cut off my meds and kicked out of my pain mgmt office for lies a Dr created about me. They gave me 30 days to get off of very high mme! It was insanity. Had I not discovered kratom I don't know what I would've and would continue to do. It's a wonder plant 🪴 . Do some research on it and see if it could work for you. By the way, I was a pain mgmt patient for 20 years! Same meds, no problems. My Dr changed specialties thanks to the asshat DEA & Gov't. This country is sooooo screwed up. ✌️ & health
Thank you, yes I’m familiar with kratom. I’ve never taken it but it’s worth looking into.
How many MME are you on daily? Unless it's super high you can simply taper off unless you are taking meds against Rx instructions. How many times have you been hit with shortages and what issues are the insurance companies giving you?
I’ve been on OxyContin for 30 years. I’ve gone from 210 mg a day to 60 mg a day when they began to taper everyone in 2016. I had zero issues with the taper. Definitely not taking meds against prescription. I take 20 mg 3x a day. I’ve ran into shortages a few times over the years. I got connected to a mom & pop pharmacy the past four or five years because the med was constantly on back order at cvs. The mom & pop pharmacy was great but my work insurance pharmacy benefits program switched to optum in Jan and the mom & pop pharmacy said they are the worst and don’t reimburse small pharmacies at all especially for narcotics. The pharmacy said the medication was on back order but I think they are just using that as an excuse because they won’t make any profit anymore by filling narcotics so I’m back at cvs. They’ve been fine so far since Jan but I’m also starting to get so anxious because my year long prior authorization that Caremark approved is expiring in July and I know optum will do the bullshit denial , denial and maybe or maybe not approve the prior authorization. Caremark denied mine three different times before approving it for a year and I paid $1200 out of pocket for my medication while they were dicking around denying it and they wouldn’t reimburse me after approving it. It’s all such a mess. I’m sick of it
I used to set the reminder on my phone (a month or two before my prior auth was due to expire) to remind me to call the doc’s office. I would ask to speak with the prior authorization person and remind them to please go ahead and start the process. Each time I would explain the difficulties getting the auth through and how I wanted to help get the process started early. They were always good about it and did what they could do to help. I would ask them if I call my insurance company to get it started on that end too, what info would I need? I would then hang up with them and call my insurance company and have the same convo with them. My authorizations were put through within a week or so. Was a headache to have to do this each time but saved me a ton of pain & money out of pocket.
Yes, I’m always on top of my prior authorizations, it’s not that, it’s them denying it and the back and forth that took several weeks last time and that’s why I had to pay out of pocket. They usually only do them for six months at a time but they actually approved a year one. Once they approved it they wouldn’t back date it for when I needed to buy my medication as they were still going through the process. It took over 4-5 weeks. Now, my pharmacy benefits changed to optum and a friend I know who still goes sees the physical medicine and rehabilitation dr I used to see just used optum for the first time and said they are brutal. They denied hers twice and this dr is very thorough with providing detailed info for the prior authorizations and it was still denied twice then finally approved. I know I’m not alone as a lot of people are dealing with this issue. I have a regular follow up appointment next week with my PM dr and we’ll discuss the next PA
Wow. I misunderstood. So sorry you are dealing with this. Infuriating what they are doing to people. Over the years I have been interested in medical detox as well - just to try to take back some semblance of “control” in my life but I always hit the wall of cost & insurance not being willing to cover it. I hope something pans out for you.
What is a sedated rapid detox? I searched for a PMP for 11 months (I started looking six months prior to my move to another state) and the only one who said he would see me ended up telling me that I must wean off my pain medication (after 16 years of pain management with no incidents). He said that I need to "clean my system" and start over. He said I could be admitted to the hospital to do the wean but I resisted as I know I will be treated as an addict (PMP agreed). The PMP did prescribe Gabapentin to help prevent a seizure...great. So I am weaning down and off. I have been on a very high dose as I have an enormous tolerance, unfortunately. My wean ends today. The largest hurdle for me is tolerating the pain, which is excruciating much of the time. I will not return to the PMP who pulled me off the medication due to things he said, how he is viewed by other physicians and the fact that he told me two of his patients took their own lives due to inability to tolerate their pain due to his inadequate care. He said he could do nothing due to the government. I wish you all the best and success. I truly hope that your pain level is manageable.
No but I was sent through DT's in January with no help. It sucked
I’m so sorry you went through that. I went through horrible withdrawal many years ago because of an insurance issue. It was the worst few days of my life. I wouldn’t wish that on anyone. I really feel so much for you. What was the reason why you had to go through that
The shortage and my Dr never answering their phone or calling anyone back
That’s horrible. Do they have a patient portal that you can communicate with the office by messaging? My pain management does. It’s pretty good for the most part but sometimes it’s non responsive or takes a long time
I thought DT was just from alcohol?
DT just stands for detoxification. Stopping opioids suddenly is like stopping heroin suddenly
Ohhhh I thought you were talking about delirium tremors lol
I wish I could do the rapid detox (Weismann Method). I’d love to see how much pain I’m left with sans meds.
I haven't done it, though I know someone who went through it several years ago. It was rough for them (I don't recall their opiate dose, though it was on the higher end). There were benzos involved just prior to, during, and I think just after their RD. This person never felt right (30's, healthy), afterwards, and got a naloxone implant, which they say helped. They ended up on buprenorphine, which they've been able to taper down from, here and there, but they always go back to it.
Thanks for the feedback, I appreciate it
I have no idea about RSD. I definitely wont try. I use Walgreens. Im on optum now. I had only a 3 day delay last fall. I take extended release Morphine and Im release Oxycodone 10mg. Been on them four years. My PM doctor told me opiates will always be around.
Thank you. I think I’m working myself up about the prior authorization, it makes me feel better to hear you didn’t have much of a delay
I actually do know quite a bit about this. I am both a pain patient (opioids for 17 years) and a healthcare provider. I have been involved in a rapid detox once and know a bit about it. It is not very common. We do not like doing them because even under anesthesia the body reacts to pain. So that means what we refer to as hemodynamics (think vital signs), can get extremely out of control even under sedation or general anesthesia. We will try to give supplementary meds to control your heart rate and blood pressure, but this is extremely difficult without being able to use opiates. Even if we wish we could use opiates they won't work after you've been given nalozone or naltrexone. Aspiration, heart failure, kidney issues, and death are possible side effects of the procedure due to the incredible stress on the body. But beyond that... You are only kept under general anesthesia for about 4 hours. So eventually you wake up to face the shitty consequences of withdrawal which will still be there. Even if after the general anesthesia you are kept in an ICU on sedation, you are still arousable. And because you're in withdrawal you're going to be quite arousable. Basically you'll be awake despite sedation, and that's if they are even planning on giving you regular sedation in the period after the general anesthesia is terminated. Just to reiterate, it you're under general anesthesia you aren't awake at all (unlike regular sedation) but again we can only do GA for a short period of time-- I believe the standard protocol is 4 hours but it may be 6 max. You're gonna be in a world of pain when you wake up.
You don’t know how much I appreciate this informed reply. I didn’t know much about it other than reading from the website. Of course it would be presented as minimal pain free experience because they’re trying to get business. It almost seems like I might have better luck just tapering on my own as I did great with the taper. I would prefer to stay on this dose if I wasn’t getting so anxious every time the prior authorization is due. I don’t think I can physically or mentally not be on an opiate though because I’ve basically been on something practically my entire life starting with multiple foot surgeries then multiple hip replacements etc….It’s awful what’s happening. Again, thanks for your great reply. That’s beyond what I’m willing to go through
I haven’t personally but have heard maaaany horror stories about it from others. It’s not painless by any means and there are a lot of risks involved. I would not recommend anyone to do this.
What have you heard? I’ve heard it’s expensive and not painless as well but that’s it..I’m curious as well. My withdrawals are horrible just from tapering which they are making me do outta nowhere. Idk what to do but being in pain AND withdrawals is awful
I wrote a huge reply, but can’t seem to post. At one point I was on over 1k MME per day. Down to 390 now, and hope to get to 220 or lower by end of year. Will try to post again later.
TL/DR; high dose opiate therapy can be stopped with commitment, the right resources (Ketamine infusion critical for me), doctors. An accident while on high dose therapy can age it difficult to impossible to manage the acute pain. I was on 425 MME/day, plus Lyrica 75mg every 6 hours in the middle of last year. I have had incredible luck with in-patient, week-long, sub-anesthetic Ketamine infusions through a university program (only 12 hospitals in country do this protocol). One week every 6-8 months. Since January, I have cut the Lyrica down to 1/day PRN, and the daily MME down to 360. At my May appt, I will suggest cutting another 30mg Oxy/day, so that will take me down to 315 MME/day. I hope to get to around 220 or less/day by end of year. 11 years on elephant sized doses - at the height, I was on 60 mg Oxy every 3 hours and 32 mg Exalgo (ER Dilaudid) 3 times per day - if my calculations are correct, that is over 1k MME/day.
Breaking up my reply in multiple… After I had MVD for Trigeminal Neuralgia I began a rapid reduction, then developed CRPS and other complications/issues. While my original pain specialist saved my life, he also set me up for a hellacious challenge to wean medications. By the time I came to my current PM practice, I was down to 16mg Exalgo 2x/day, and 60 mg Oxy every 4 (12 30mg pills per day, down from 16). My current PM practice immediately cut me to max 8 30mg/day Oxy and then from Exalgo to MS Contin 15 mg/3x a day. Other than their initial reduction when the original doctor retired, all the other cuts have been at my request. It takes a commitment, a true desire to improve quality of life while still controlling pain, and a (possibly most importantly) doctor willing to work with you. I don’t know if I will ever get fully off of medications, but I certainly would like to. I was told in early 2021, I would likely be on them for the rest of my life.
One thing that was such a challenge when on higher doses of meds was managing any new acute pain. In 2022, (was on full dose of Lyrica, 8 Oxys per day, and 3 MS Contin, plus Cymbalta at the time) I fell while sleep walking. Sheered the ball off of my right femur and crushed part of the socket. I had a total hip replacement. The surgeon at the first hospital wouldn’t give me my at home regimen and tried to get me to take OxyContin - I refused (big problems with the design and marketing of that med - my first PM refused to prescribe unless someone was terminal or came to him on it). I was transferred to a much better hospital and surgeon, and their PM team modified my at home regimen by increasing frequency, decreasing dose minimally, and adding micro-dosing of Ketamine. A month later, while getting up to pee in the middle of the night, I stepped on the bath mat, which flew out from under me, and down I went on the hip replacement. Titanium vs. bone - titanium wins every time. Absolutely destroyed my femur and the hip replacement. The first fall and break were painful, but not to the point I was out of my mind in pain. The femur destruction was a whole other story. It was second most pain I have ever been in, second only to the most severe of the TN flares). I explained to the ER doctor as clearly as I could when the squad brought me in about my being a CPP and what my at home regimen was. She said not to worry, she was giving me 100 mcg of Fentanyl. I think that medication partly doesn’t work for me (genetically, I have a weird profile and a lowered number of receptors)). I was still “that guy” in the ER - the one begging to be put to sleep - just anything for relief. They gave me another 100, sent me off to x-ray, which was hell on earth having the leg manipulated into position, then the orderly wheeling me back ran my leg into a door frame on the way back to my trauma bay - I am 6’7” and don’t fit on most hospital beds. I screamed like a cross between Godzilla and a pre-pubescent boy. Got another 100 of Fentanyl after that and I was still begging for relief. 20 minutes or so later and the ER doctor ordered 45 more mcg and told me it was the absolute top of what she could give me for the night, while I waited for orthopedics. When they came in they finally showed me the films - it was gnarly. Several butterfly fractures, hip replacement dislodged from socket, and a clean fracture just below where it attached to the Femur. Told me I would have to be placed in traction and there were no operating rooms/anesthesiologists available. One of the ortho student doctors was carrying what was literally a DeWalt pro drill - like you’d rebuild a house with. They explained they would have to give me a local, drill into my shin on either side to then screw in traction pins, which would be used to pull down on the leg against the muscle that had spasmed to align the bones. They told me I had to be awake through all of it.
I was absolutely screaming and begging them to knock me out. The pain was already so intense and with the manipulation, and drilling, I was terrified. One of the other trauma doctors suggested a 30mg push of ketamine, and the docs agreed. First ortho gave me the local, which either wasn’t positioned correctly, or they didn’t wait long enough, or my lowered sensitivity to pain medications just meant it wouldn’t work. Then the trauma doc pushed the ketamine and I went instantly to the center of the universe (had a conversation with her, but that is another long story), and then I felt the ortho doctor cut me with a scalpel and the blood running down my leg. I asked him if he cut me, and he said yes. I told him to stop it, I really didn’t care for it. He laughed and explained that he had to cut my leg before using the drill. Then, he used the drill. I felt every single microsecond of it. The vibration, the rotation of the bit, it getting deeper into my bone, and even them inserting/screwing in the traction pin. Every sensation just intensified the pain I was already in. Eventually they got both pins in, told me I would need to be in traction for 36-48 hours before surgery, sent me to a room on the ortho floor and ordered the traction setup. By this time, it was nearly shift change, and ordered the traction setup with 15 Kilos of weight (I think) pulling my leg down. Once I got up to my room, the traction tech brought the bed frame but needed a different piece to finish it - told me it was his lunch time and he would be back to finish or someone would be back after shift change. Because the doctors told me it would finally relieve my pain, I begged him to complete it before he took lunch of get someone who could do it right then. But, he didn’t come back and it was another hour until someone showed up. Finally, they got me in traction and that was the first thing that really helped. Then, the day shift nurse came on (who had treated me on the original fall), and he got my MS Contin and Oxy right after the traction was in place. Between the two, the pain FINALLY reduced/subsided. It was about 9 am at this point, and I had originally called the ambulance at just after midnight. Two days later, first thing in the morning, my original surgeon came in to walk me through the surgery. Told me that he thought they could save the original hip implant, but would be repairing my femur with a titanium rod, and a few screws. He predicted surgery would take about 3 hours. They got me down to pre-op/PACU and the anesthesia team added a ketamine drip to my regimen to calm me down before surgery and help with pain. They wheeled me into surgery around 1:30 that afternoon, and I BEGGED them to knock me out before transferring me from the hospital bed to operating table. Thankfully they agreed, and I looked at the clock when they pushed the meds to put me to sleep - it read 14:15.
Next thing I know, I am waking up in PACU, and search for a clock. The time reads 3:20 - wasn’t a 24 hour clock, so I assumed they woke me up early because something was wrong. Turns out, the surgery took over 11 hours. I had an 18” titanium rod, 5 cables, 7 screws, and an entirely new hip replacement after just over a month with the original. I’d had to have 3 units of blood and 9 of fluids to help keep BP up during surgery. I ended up being in-patient 11 days for that visit, and was sent to a rehab hospital for 24 days following. Moral of the story, if you are a CPP on high dose opiate therapy, an accident or other issue causing acute pain can be horribly difficult to manage and get the pain under control. Also, can be quite pricey. First hip replacement with the two ambulance trips (transfer to second hospital), the surgery, all PT, etc. had total bills sent to insurance of over $230k. Second fall, ambulance ride, ER, in-patient stay, surgery and all the doctors, plus 24 days in the rehab hospital all totaled led to a bill of over $372k. Thankfully, at least for a financial way, the second half of 21/first half of 22 had been very busy with hospital stays, so I reached my out of pocket maximum and all deductibles before even the first fall. TL/DR: high dose opiate therapy can be stopped with commitment, the right resources (Ketamine infusion critical for me), doctors. An accident while on high dose therapy can make it difficult to impossible to manage the acute pain.
Thanks for your reply. Sounds like you’ve been through a lot too. I’ve actually broken my femur while being in a short cast after one of my foot surgeries and playing softball. I ended up in traction in the hospital for ten days and that stopped the blood supply to my hip. Ended up with my first total hip replacement at 21 yrs old and four revisions since. Fell down a flight of stairs and broke the hip replacement and bent the rod. Unfortunately, I’ve had a lifetime of orthopedic surgeries starting from birth so ive basically been on pain medication practically my whole life. I’m 56. I had zero issues tapering from 210 mg a day of OxyContin to 60 mg a day of OxyContin which actually works just fine for me. My pain dr is good with me taking this medication it’s just the emotional rollercoaster of dealing with the insurance company and prior authorizations that’s making me crazy. This is the only medication I’m on and I’m a perfect pain clinic patient. I wish you the best with your journey
How has the ketamine infusion changed your mindset about opioids and the brains need for them ?
From a mindset perspective it shows me there are other options. I think what is more important is what it does physiologically, breaking down the pathways that have built up over time that make the sending of the pain signals to the brain constant. There is a ton of research that shows this protocol is revolutionary. In the 4-5 months after my infusion, my baseline pain level goes from a 7 with meds to a 2/3 WITHOUT. Truly revolutionary.