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Thread: Long Acting Pain Meds; Lesser of the Evils

  1. #61
    Moderator jody's Avatar
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    yes. I feel like I am always on the edge of autonomic distress now. that has been recently over the last few months.


    I did have trouble with sandoz brand patches, I would get a big dose, and be nodding within six hours and then hell for two days, until six hours after the new patch, then be over medicated again.

    I had reported the problem, and filled out the survays and all the crap the manufacturer wanted, and went back to the mylan brand. I knew several other people at the time, who had the same problem. they are the same maker but the sandoz was at the time very unstable in the way the medicine was absorbed.
    since we all reported the same problem, the pharmacy stopped requesting it, but the company never acknowledged any problem. As soon as I went back to the Mylan brand the problem stopped.

    other than that, I was able to avoid withdrawal by changing them at 54 hours. My script was for 48. if one came off early or stops working early, It was ok, I had enough with changing them when I feel mild withdrawal than right at 48 hours. and by not removing the old patch, for 2-3 hours after putting a new one on, that also prevented some withdrawal. I rarely felt any high from the patch, it does not affect my personality like vicodin did, and I could still use it if I was throwing up because it is a patch.

    they are a pain to keep on in the summer though, and you have to place it in the right place for it to stay on. that is usually the upper arm, and that makes it visible. people ask or comment sometimes, but again, the lessor of several evils.
    really the fentanyl patch has made it possible to actually have an active life for years. It was worth the care it takes to use them. I would not use them if I also drank alcohol though.
    Relying on pills for pain control was much more of a roller coaster. it was easy to fall short at the end of the month, and I had no constipation problems with the patch like with pills. appetite has been a problem, though not sure if it is the patch doing that. as well as some sleep problems when the patch would kick in at night.
    I learned how to make it work for me, but not without great care, and acceptance that some withdrawal is eminent.
    ..... you can't keep raising the dose all the time, it is a powerful narcotic that the body becomes dependent on. for me the pain is worse than the milder withdrawal symptoms. knowing that the symptoms will end in an hour or two, or six, and id have less pain for maybe weeks in between made it worth using until recent months.

  2. #62
    you make good points. Especially about the trade off of some mild withdrawal symptoms that you know will go away in a few hours versus the intrinsic pain problem. What has happened in recent months that you mentioned at the end of your post?

  3. #63
    Wow almost a decade! I just never of lasted that long. I do enjoy the effects as they are beneficial for me with the patch, but too strong and the side effects caused me to not be able to see patients. Plus, I do not like any chronic pain control medication that causes such harsh withdrawal symptoms for me personally. I have patients who do very well on Fentanyl IF and only IF they use it correctly. Kudos to Jody for truly tracking your 3 days or whatever your particular specified timeframe is. Many don't do that and simply put a new patch on when they think the old one has stopped working.......
    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  4. #64
    Quote Originally Posted by avictoria View Post
    Charlotte that's so great that your new pain medicine regimen is working well!

    But keep a close eye on the side effects and medication interactions. Apparently the optimal dose and schedule can require a bit of tweaking because 1) it stays in your system a long time and accumulates 2) everybody metabolizes it a bit differently and 3) the pain relief effects wear off sooner than methadone clears your system.

    http://www.medicinenet.com/methadone-oral_tablet/article.htm

    Keep in touch with the pharmacist and your doc and a close eye on the shallow breathing. The medical info on line about accidental OD's with methadone in pain management is kinda scary. If you do a google search on methadone pain management there's a ton of great information.

    Yeah the Ducolax brand sells both stool softeners and stimulant laxatives. And there are OTC generics for all the medications.

    I bought a small lock-box and kept all my medications locked up-especially when my nephews or friends' children visit. That protects you and any 'inquisitive' kids!

    Hope it keeps going great!

    Avic, the jury's still out as things get tweaked. I only took 5 mg last night and repeated the same side effects. Contacted the Dr. this morning and he wants me to continue 5 mg, starting tomorrow morning, and see how I do through the day (breathing) on it. I'm not having as good a day regarding pain but being out in my chair yesterday could account for the difference. The bumps and vibration do a number on me with no quick fix.

    Speaking of, I never go for a quick fix for the pain, never take meds ahead of time or exceed my daily limit per the Dr. We have extra Hydro from my husband's recent surgery that I won't touch, no matter how bad the pain gets. So, no worries that I'll take too much. I'm scared to death of this stuff, even the Hydro.

    I've had some minor constipation since the Hyro increase so will be careful. I'll keep an eye on the breathing too and if I struggle with it tomorrow, I'll call the Dr, again! It's the build up that concerns me too. I can handle 2.5 mg valium, once in a while, when the spasticity gets really bad, but if I were to take it several days and let it build up, bam, breathing trouble and crying, lots of crying. LOL

    Med safety is good practice with children. I've always kept meds in a locked, top secret locations...

    As always thanks for your post, Avic! I really appreciate all the good advise here and I'll continue to keep you posted.

    T
    Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

    "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
    — Marianne Williamson

  5. #65
    Lin, I'm sorry, I should have clarified my daughter's long term use of Dulcolax. She suffers from Schizoaffective disorder. She requires a boat load of medication to keep her stable. Most of which cause constipation, something she struggled with anyway since childhood (before she became ill). A stool softener w/ stimulant is what her Dr.'s recommend.

    She's has a delightful personality, around 13 - 14 developmentally and stuck there; another reason I don't have time for pain and it's pains. LOL

    But, no, I don't want to become dependent on a stimulant.

    Hope you're doing well!
    T



    Quote Originally Posted by ~Lin View Post
    Yes, but avic said dulcolax stool softener. Dulcolax is typically referring to the stimulant laxative bisacodyl, which should not be taken regularly if not needed because you'll become dependent and lose bowel function. I'm not familiar with a dulcolax stool softener, only with the stimulant laxative. So I asked if they made a stool softener as well, to make sure there was no confusion and the stimulant being taken thinking its just a stool softener. Stool softeners act by preventing too much water from being taken out of the stool. A stimulant works by stimulating the bowels peristalsis and sends stool through faster so that not as much water can be absorbed. You don't want to become dependent on stimulants if you have bowel function.
    Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

    "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
    — Marianne Williamson

  6. #66
    Charlotte (or do you prefer T?)

    You have my unending admiration-dealing with pain, disability, teens and a daughter with schizoaffective disorder. Wow.

    I hope this pain management plan works out well for you and am glad you're being cautious. If you have to ditch the methadone I wonder if they might look at extended release morphine or buprenorphine. My lay opinion is that if you have to ditch the methadone, do it sooner rather than later, before you become physically dependent on it because it is said to be very, very difficult to discontinue w/out miserable withdrawal. If you all decide to stop the methadone make sure the doc switches you to something at an equivalent dose and dosing schedule to cover you.


    Most opiates get metabolized pretty quickly; that's why they devised extended-release delivery so that hopefully you maintain a fairly steady serum level of opiate. Oxycontin, fentanyl patches and extended-release morphine are examples.

    Methadone and buprenorphine in contrast last much longer in your system simply by 'sticking' to opiate receptors. I know some pain docs are starting to use buprenorphine. I have no idea how well it works, expense, DEA regulations etc with bupe. It might be an option.


    This company has just asked for FDA approval for tylenol-free extended release hydrocodone. http://www.zogenix.com/index.php/products/zx002/ It might be expensive though and the extended release formulation a PITA as is the 'new' Oxycontin.

    Do your pain levels go up and down a lot? You might get decent relief from taking a short-acting medication in smaller quantities but at more frequent intervals.

    I'm just tossing ideas out there & hope they're useful. Has anyone here used buprenorphine for pain management?


    All the best!!!!

  7. #67
    Senior Member ~Lin's Avatar
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    I have some friends who had success with buprenorphine. They're in australia though, and used the patches. Not that its much help, but I (with my vet) also use buprenorphine on my foster cats after a spay for pain management.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  8. #68
    Quote Originally Posted by jody View Post
    My brother in law had no cord, it was liquified in his accident, so about then vertabre and his cord were removed. He still developed a pain syndrome. rsd or something like that.


    He was told that with no cord this is not possible, however it was agony, never went away, and eventually a combination of methadone and ghb caused him not to wake up.

    I did some study, and concluded that methadone, can accumulate in the system, so should be used very carefully especially when taking other drugs. as some people do not process it the same all the time, and dangerous levels may cause overdose, even if you have not increased the dose.

    I asked my Gp about this, and she says that some elderly could have a problem with methadone accumulating. I wonder if some people with sci would be just as sensitive.

    This topic did come up in another thread, but I can't find it.
    anyway, this is the reason I have not tried methadone.
    I have been on fentanyl since 2000 though, and I think it may be the cause now of my blood pressure problems. Up until a few months ago however, going to a patch has been very good, and pain control was variable, but did improve quality of life until recently. I would be aware that sometimes you can get a bad patch, or some brands have problems, and you have to have a few days of hellish withdrawal until the new patch kicks in. that could take up to 12 hours, with days of recovering from the wipe out of having to withdraw.

    In my opinion it is worth trying. you must always fill in the patch info, so as not to lose track of when it went on. In this way you always know when you get a new one, and you don't run out.


    As Arndog and Rob said, cheers to you, Jody, for having your pain under control AND standing your ground on a med (Methadone) you didn't think was safe for you! My husband and I laughed when we left the doc's office because the Nurse asked if I had studied any of the long acting meds and if there were any I was opposed to trying. I stated, Methadone, too dangerous, (she agreed, lol), or any type of patch, since I have had a reaction to a patch med. The first and only drug he offered, Methadone! LOL His next choice will probably be a patch! LOLing again! With the Oxy's, he talked about insurance issues, (that I don't think would be a problem w/ my ins.), and generic not working for most of his patients, (clueless here).

    I'm so sorry about your BIL and the hell he lived with in this world. I lost my 2nd cousin the first of the year to accidental OD. He had lost his leg in a motorcycle accident several years ago. Although he had a history of drinking and had several close calls, (OD's), with his meds, the PC in TX gave him boat loads. His Mother still can't talk about it and so I'm not sure what he was taking, but I do know he crushed it and put it in his drink. You can't mix these drugs or take any chances in my opinion.

    I hope you find the root of your BP issues and it doesn't mess with your pain control!

    T
    Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

    "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
    — Marianne Williamson

  9. #69
    Quote Originally Posted by jody View Post
    yes. I feel like I am always on the edge of autonomic distress now. that has been recently over the last few months.


    I did have trouble with sandoz brand patches, I would get a big dose, and be nodding within six hours and then hell for two days, until six hours after the new patch, then be over medicated again.

    I had reported the problem, and filled out the survays and all the crap the manufacturer wanted, and went back to the mylan brand. I knew several other people at the time, who had the same problem. they are the same maker but the sandoz was at the time very unstable in the way the medicine was absorbed.
    since we all reported the same problem, the pharmacy stopped requesting it, but the company never acknowledged any problem. As soon as I went back to the Mylan brand the problem stopped.

    other than that, I was able to avoid withdrawal by changing them at 54 hours. My script was for 48. if one came off early or stops working early, It was ok, I had enough with changing them when I feel mild withdrawal than right at 48 hours. and by not removing the old patch, for 2-3 hours after putting a new one on, that also prevented some withdrawal. I rarely felt any high from the patch, it does not affect my personality like vicodin did, and I could still use it if I was throwing up because it is a patch.

    they are a pain to keep on in the summer though, and you have to place it in the right place for it to stay on. that is usually the upper arm, and that makes it visible. people ask or comment sometimes, but again, the lessor of several evils.
    really the fentanyl patch has made it possible to actually have an active life for years. It was worth the care it takes to use them. I would not use them if I also drank alcohol though.
    Relying on pills for pain control was much more of a roller coaster. it was easy to fall short at the end of the month, and I had no constipation problems with the patch like with pills. appetite has been a problem, though not sure if it is the patch doing that. as well as some sleep problems when the patch would kick in at night.
    I learned how to make it work for me, but not without great care, and acceptance that some withdrawal is eminent.
    ..... you can't keep raising the dose all the time, it is a powerful narcotic that the body becomes dependent on. for me the pain is worse than the milder withdrawal symptoms. knowing that the symptoms will end in an hour or two, or six, and id have less pain for maybe weeks in between made it worth using until recent months.

    Cheers again, Jody, for standing your ground with the drug manufacturers and pharmacy!

    Ugg, additional loss of appetite is a another reason I would be concerned with Fentanyl. I look like I should be hanging in front of an attotomy class as is...geez, i can't risk it!

    Withdrawal is another issue for me. Since the flood, no one in or out for almost a week, I'm scared of that. I never had withdrawal and from what I read, I don't want any part of it. I'd prefer something, that in an ER state, i can get off of rather easily and quickly. BUT, I don't think that's going to be the case if the Methadone works out and the Dr. didn't seem to hear when I mentioned it. I'm sure he was thinking, picky, picky, picky!

    I don't tolerate alcohol any better than the meds, a couple of sips, my lips start tingling numb and I'm buzzed. Never could touch it and hate the smell! LOL

    Again, hoping things aren't going south on you!

    T


    Quote Originally Posted by arndog View Post
    you make good points. Especially about the trade off of some mild withdrawal symptoms that you know will go away in a few hours versus the intrinsic pain problem. What has happened in recent months that you mentioned at the end of your post?

    I wish could have this attitude with the medicines and not be so darned afraid. Withdrawal, OMG, I'm really afraid withdrawals would kill me!!!

    I've got to wrap up these replies now and call the Pharmacist again because I forgot to ask the Dr. if it would be ok to take my Xanax tonight since I'm starting the 5 mgs Methadone in the morning. Too scared to take it without asking, LOL! Walgreen's dislikes it as much as me when the Dr. changes my meds ...I drive them nuts with Q&A!!! LOL



    Quote Originally Posted by russianrob View Post
    Wow almost a decade! I just never of lasted that long. I do enjoy the effects as they are beneficial for me with the patch, but too strong and the side effects caused me to not be able to see patients. Plus, I do not like any chronic pain control medication that causes such harsh withdrawal symptoms for me personally. I have patients who do very well on Fentanyl IF and only IF they use it correctly. Kudos to Jody for truly tracking your 3 days or whatever your particular specified timeframe is. Many don't do that and simply put a new patch on when they think the old one has stopped working.......

    I would do the opposite of your patients and forget to change the patch until the severe withdrawal symptoms hit. The milder withdrawal I would probably blame on anything else I could come up with. I'm bad about second guessing myself with respect to symptoms, drug side effects, and allergies; even when my tongue swells and there is no denying it.

    I'm assuming you're a doctor? That's a big advantage when suffering form SCI or the like. Also, great that you're able to maintain your practice!

    T
    Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

    "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
    — Marianne Williamson

  10. #70
    Moderator jody's Avatar
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    Im interested in how your pain management plan is going.

    What the Dr says about using methadone, and how to use it safely.

    I do know a few people who use I think it is avinza. it is a low dose extended release morphine sulfate. I have asked about that drug, but it still means getting off the patch. I have heard they have the morphine in a patch too, but don't know anyone using the patch.

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