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Hoping to stop taking opioids-looking for substitute medications/weaning suggestions

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    Hoping to stop taking opioids-looking for substitute medications/weaning suggestions

    I've been a C-5 quad for 25 years and I have been taking OxyContin since around 2005.
    I take 30 mg a day total of OxyContin for neurogenic and general muscle pain, in addition I am on baclofen and clonazepam for spasms and ditropan for my bladder. I also take a little bit of Senna and Colace along with using a magic bullet for the bowel program. And then occasionally I will take 25 mg of tramadol if I am going to be out and about post dinnertime.
    I didn't just start with OxyContin, I can't remember exactly all the drugs I tried. But, there were tricyclic antidepressants, gabapentin, Lyrica, Cymbalta and so on. None of them worked terribly well and eventually I started taking OxyContin. My problem is they are legislating the practicality out of continuing to take this drug. First, every time I change a doctor, which is not that often, it's hard to find one who wants to prescribe. If something is up with my doctor then there is also a problem. A few months ago he went out of town and even though they have a record of me refilling this drug religiously on virtually the same date every month, no one else in his office would write for it until he came back. My current doctor is retiring so that turns into a bit of a problem. Second, there are pharmacies that won't fill prescriptions for maintenance narcotics. Third, the monitoring level keeps tightening. In Ohio I have to go in every couple months, but for example, in Sarasota County where I hope to move I have to see the doctor once a month and provide a urine sample (the urine sample isn't checked to make sure I'm not using other drugs… It's supposedly to make sure the levels of OxyContin are therapeutic. I did not think one could detect that from urine and what if one supposedly shows that it is not). What happens if I leave town for 5 or 6 weeks? I'm not sure if these same rules apply to the tramadol or not but I assume probably.

    In any case, although it's effective, it's just become impractical and I would like to try to stop taking it. How do I wean myself off and do you guys have suggestions for substitute drugs. The problem is although I take it for pain it ticks a lot of other boxes and helps with a lot of other things.
    Neurogenic pain-it helps reduce this quite a bit
    Back pain-it also helps with this muscular pain
    Spasms-it reduces my spasms significantly-I do not think I can take enough baclofen or klonopin to substitute for its effect on my spasms, these anti-spastics also seem to make my body temperature drop. I wind up much colder after taking them.
    Low body temperature-like a lot of quads, I have low body temperature problems. It seems to help keep my temperature up a little bit higher and prevent me from shivering quite as bad.

    So I would need to find substitutes that help with each of those. Anyway, any suggested courses of action are welcomed. Don't get me wrong. I could stay on this drug. Some doctors look at me, say you are maintained, and are perfectly happy to prescribe, but they are increasingly being handcuffed by the government. The stigma attached to this drug is problematic at best and they keep making it more difficult to get. I'm afraid we'll hit a point where suddenly I can't get it and I would prefer to have transitioned to other drugs when that happens. I have very little faith in doctors when it comes to this. None of them seemed to be particularly creative with solutions. And suggested weaning schedules have been ridiculously fast. They seem to have a very limited view when I tried to explain exactly what we would need to substitute for.
    Thanks much

    #2
    Search "withdrawals" on this site, there are posts by others who were at the crossroads you're at now. I couldn't feel better having transitioned off the meds... best of luck
    get busy living or get busy dying

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      #3
      Okay, thanks. I tried searching opioids in such. Didn't think of the term withdrawals. Thanks again

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        #4
        I got off all my pain meds about 4 years ago (percocet, tramadol, gabapentin). I gave myself about 6 months to ween off of everything. Don't get me wrong, the process was not fun and the increase in pain with every step down was pretty rough. But after a while it would level out and I would step down again. For me personally, my body had acclimated to all the meds so when I eventually got everything out of my system, my pain wasn't any worse. Just found out they weren't really helping all along...The lack of side effects now (mostly cognitive) have been worth it by far.
        Last edited by Brad09; 11 Jun 2020, 10:15 AM.

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          #5
          That's exactly what happened with me, I was taking Opana which is a OxyContin/morphine derivative, I actually had to stop taking it because my p.m. Dr. told me she could not prescribe it anymore because I popped positive on a drug test, marijuana is not a drug! But that's one thing that will help weaning down, I told her to give me enough to last for 3 months so I could taper down myself instead of just 6 weeks. Once I got off of them all I was not hurting. I had to get off because of the cognitive issues also
          C4 incomplete since 1985

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            #6
            There is pretty robust data suggesting that, exactly as others have described above, your body becomes used to opioids and your pain returns to preopioid levels after a few weeks, becoming worse if you withdraw or stop. Discontinuaron opioids, there is no reason to think that your pain will be any worse than it is today after going through a few miserable months while coming down.

            Opioids are fantastic for acute pain, but unless you’re willing to continue increasing the dose every few weeks until you die or overdose, they’re just not very effective long term. This is one of the reasons why many states are clamping down on chronic prescriptions, but not so much in the acute setting (like less than one week).

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              #7
              My pain was from spasms. The trick was to reduce the spasms rather than numb the pain. Best thing I ever did for my SCI was finding the cause (kidney stones) and ridding the spasms (baclofen pump). Without kidney stones and with a baclofen pump, I take no pain pills or any other meds. Well, I take potassium citrate to prevent stones. But that's more like a supplement than a med. I find it helps keep UTIs away and that helps minimize spasms, which keeps me out of pain.
              Last edited by August West; 12 Jun 2020, 12:41 AM.

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                #8
                Find the right doctor and consider Medicare Advantage. I saw pain doctors, neurologists, neurosurgeons, and orthopedic doctors. They were all fast to pull out the pad and write a prescription. The neurosurgeon even suggested cutting an inch out of my spinal cord. That was an indirect message saying he had no good solution. In hind sight, it was my own fault for going to a surgeon. How much time and resources would it take him to help me nonsurgically and how much could he bill Medicare for it vs cutting people? I concluded we were not a good match. That's when I went to a pain guy thinking he was more apt to find nonsurgical solutions. But he was poorly informed about SCI and seemed to want to milk Medicare. This is when I stumbled upon luck. The PA saw what was going on (mismanaged cared) and told me off the record to see a psychiatrist. Great advise that far surpassed any doctors advise up to that time. The psychiatrist immediately diagnosed a faulty baclofen pump. After he replaced it the spasms went way down. But they didn't go away. A urologist decided to do a CT-scan. I had kidney stones. He got rid of them and the spasms immediately went away.

                This was a very round about way and involved some luck and lots of perseverance. Part of my takeaway from this experience is that original I prefer managed care (Medicare Advantage) over original Medicare. Sure original Medicare gives you more "freedom" to select any doctor, which sounds like a great thing. But who am I to know which doctors are are honest and competent and most appropriate choice? How am I supposed to know if they are milking Medicare at my expense? Well, it becomes apparent at some point. But by then it's been a huge waste of health, time, and money. My primary care is great at general medicine but no expert in SCI. Enter managed care. They have a financial interest in monitoring progress and can quickly spot if a doctor is honest and competent or is a quack and trying to milk medicare. I find that things are resolved much more quickly and with less expense. Coincidence? I don't think so. Just them knowing that I am in manged care makes them know that they can't milk Medicare. Hence, it's in their best interest to solve my problem quickly. I leave you with the same message I opened with. Find the right doctor and consider Medicare Advantage. Good luck.

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                  #9
                  Thank you for the replies! It is good to hear some sympathetic voices. For those that weaned off of narcotic meds. How did you taper it down? I'm taking 30 mg of OxyContin a day. I looked at recommendations on how much to start taking it down. And even those seem to go a bit fast.
                  Aside from more baclofen, and marijuana, did you try anything else to help ease the transition?

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                    #10
                    I mean good for you I’ll take your extras your not using lol but for real I tried and got off them but without something I was in so much pain I couldn’t get out of bed or function normally . With meds I feel more like myself. But I hope you can do IT it’s really not hard just taper then go completely off it will be hell for like 1-2 weeks with sweating and stuff but after that ur good it will be worth thev2 weeks of hell and a lifetime of possibility feeling better . I have done it so if u want to message u can

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                    • wchair
                      wchair commented
                      Editing a comment
                      Thanks, I'm not looking forward to it. But it seems like a new problem comes up every month when it comes to simply getting a prescription called in. Gonna give it a go. But not to let him settle down a little more in several months

                    #11
                    Best think like I said in another thing is if you are tryin to quite make sure you don’t have access to any meds because you will be tempted to get out of the withdrawal and end up taking a pill so have someone lock them up or do whstever so you don’t have access I found that was my weakness I was in pain and withdrawals sweating that I’d just say I’ll take just one to feel better and it just never helped and you won’t quite if u have access

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