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    Old 07-20-2008, 01:49 AM   #1
    Confused089
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    Comment, Q, about tolerance,

    Executor, I agreed w/ your post on the other thread about mid and strong level meds. I thought it might help to illustrate my horrendous tolerance, which occurred after I had a powerful interaction betw. meds to compare my reaction to to increase in Fentanyl, and that it might also help explain why I've had trouble getting adequate pain control during the last year.

    Quote:
    Originally Posted by Executor View Post
    I've been on meds for 10+ years and when I was on the patch earlier this year, my Doc increased it only by 12.5 @ a time as he was concerned. The extra 12.5 hit me like a ton of bricks.

    Ex
    I can feel a 50 mcg increase, but nothing less. The first time I increased by 50 mcg I felt "high" for the first time in several years and took the patch off briefly because I didn't like feeling out of it. I did not feel *anything* with the subsequent 25 mcg increases. You can imagine that it might be difficult to persuade doctors to increase my meds when I started Fentanyl less than a year ago and have such a muted response to what knocks other people out. So, it has been really difficult for doctors to understand how I can still have pain when I am on such potent meds. Doctors don't understand why I don't have a reaction like you do when I get a 25 mcg increase. The interpretation [or at least the benign one] is usually that I have an incredible amount of pain. But, since I was doing *great* on far less medication not long ago, I know it isn't related to an increase in pain, or even that I have *more* pain than other people, but to an change in my receptors from being flooded with such a high dose of oxy during a prolonged interaction betw. meds.

    I am *not* entirely clear about this, but I thought that Fentanyl was in a different "class" of meds and and involves diff. receptors (kappa?). Obviously, I'm concerned about the future b/c there isn't much out there that is stronger, unless you go to a pump, which seems like the last resort.

    None of the conversion ratios [even when cross-tolerance is eliminated] seems to work when it comes to Fentanyl for me. My question is, (if you know) do you think morphine or oxycodone will *ever* work for me again if I get off of morphine entirely and give my receptors a chance to readjust? Even on a high dose of F, I still do not have the kind of pain control I had before the interaction. Once you've gone on Fentanyl, is rotation even a decent possibility for getting the dose down or maintaining pain control w/o continuing to raise the dose? [Actually, I think I may have answered my own question somewhat - I can be on a dose of morphine now that is "equal" to fentanyl -ie doesn't result in withdrawal, but I do not get anywhere close to the same amount of pain control from it. That would seem to suggest that the fentanyl's potency [I think the potency would be the same if switching between the two doses did not cause withdrawal] isn't the only issue and that the fact that it hits a different receptor as well means that morphine is, at least for now, not as effective at equipotent doses. I'm not sure I'm making correct assumptions here however.

    I am very convinced at this point that tolerance is a major factor in using opioids - there seems to be some disagreement about this in the literature - I was stable on my oxy dose with great pain control, but once the levels had been raised really high, my receptors didn't return to the state they were in before the interaction]. Frankly, I'm just wondering what, if anything, can be done to reduce my tolerance at this point. I have def. done plenty of reading and know that blocking (?-can't quite remember] the NDMA receptor can help stop tolerance from building. It isn't clear if it can reduce/reverse tolerance as well however.

    I posted a couple more q's on the other board in the same thread for you. This didn't seem like the right place. Also, I know you are very well-informed but I don't know if I'm talking about things you haven't read up on. I'm really just putting it out there for anyone who might know more about this issue.

    Also, do you know if there is any way of changing my name on the board? I didn't realize I would be hanging out here and chose my name based on my state of mind at the time(!)

    Last edited by Confused089; 07-28-2008 at 09:08 PM.

     
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    Old 07-20-2008, 07:10 AM   #2
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    Re: Comment, Q, for Excecutor...others, tolerance,

    Quote:
    Originally Posted by Confused089 View Post
    None of the conversion ratios seems to work when it comes to Fentanyl for me. I seem to need a huge amt. of morphine [far higher than anything published [and I know the conversion ratios are conservative b/c F is so strong] to prevent w/d and the pain control is terrible. Even when there is no reduction for cross-tolerance and a non-conservative ratio is used, it doesn't work.
    This isn't unusual....This is why in the patch literature (made by Janssen), there is very wide range for conversion....It effects everyone differently. When I switched two months ago from the patch to Avinza, it took two adjustments to get it right....I ended up on much more morphine than what the Doc expected, or started with.

    Quote:
    My question is, (if you know) do you think morphine or oxycodone will *ever* work for me again if I get off of morphine entirely and give my receptors a chance to readjust? In the entire year since the interaction, and with the increase in Fent. to 150 mcg, I still do not have the kind of pain control I had before the interaction. Once you've gone on Fentanyl, is rotation even a decent possibility for getting the dose down or maintaining pain control w/o continuing to raise the dose?
    Honestly, it's hard to say....You'll just have to try. I certainly wouldn't give up. Morphine has been great for me and I don't miss wearing the patch....From a patch standpoint. I'm a big supporter of the patch, however,......Just didn't care for the actual patch part.

    Quote:
    I am very convinced at this point [after my experience w/ the interaction] that tolerance is a major factor in using opioids - there seems to be some disagreement about this in the literature
    I would agree. Only those who actually "use" these meds know what you're talking about.

    Quote:
    Frankly, I'm just wondering what, if anything, can be done to reduce my tolerance at this point.
    I don't think so...Only abstinence will have a dramatic effect on tolerance.

    Quote:
    I posted a couple more q's on the other board in the same thread for you. This didn't seem like the right place. Also, I know you are very well-informed but I don't know if I'm talking about things you haven't read up on. I'm really just putting it out there for anyone who might know more about this issue.
    Ok....I'll try to help best I can for you.

    Quote:
    Also, do you know if there is any way of changing my name on the board? I didn't realize I would be hanging out here and chose my name based on my state of mind at the time(!)
    E-mail the moderators...They can do just about anything as it's their site.



    Take care,

    Ex

     
    Old 07-20-2008, 11:51 AM   #3
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    Re: Comment, Q, for Excecutor...others, tolerance,

    Confused,

    I know you directed this towards Ex, but if you don't mind I have some thoughts that might help.

    First of all, you are very intelligent, as is apparent from your posts here and in other locations on HB. I'm not sure this is to your advantage at this point or not, but at least you are looking into the meds closely.

    One thing I must apologize for, but I haven't been able to locate your story, or the details of your condition. I see you were in an accident, but I can't find details on exactly what your injury and condition is. If you would be so kind as to provide those details it would help me offer more helpful thoughts.

    I just read the long thread on the Addiction/Recovery board and read the whole thing. I see many advised you regarding addiction, which obviously was sad for you to read. I totally understand. May I ask where you are with absorbing all that information? I see you have posted this thread with more questions about meds and tolerance and such, so I'm wondering if you are still considering the thoughts offered there, or have moved on, so to speak?

    Anyway, if you are willing to offer answers to the few questions I've asked, then I can post more helpfully.

    Just so you know, I have been on extremely high doses of fentanyl, most probably well higher than you have even considered. And, I have detoxed off of that high dose. And I have now rotated to three other opioids, the first of which was suboxone, then methadone, then morphine. And I am now doing well on morphine, which I would never have believed when I was on such a high dose of fentanyl.

    So I believe I can help with tolerance, detox, opioid rotation, incomplete cross tolerance, and so on and so on...

    steve

    Last edited by forginon; 07-20-2008 at 11:52 AM.

     
    Old 07-20-2008, 03:05 PM   #4
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    Re: Comment, Q, for Excecutor...others, tolerance,

    I would definitely take Steve up on his offer....He has wide array of experiences and I think he can provide some very useful information. Between the two of us (and others), I think we can @ least point you in the right direction.

    Regards,

    Ex

     
    Old 07-20-2008, 03:11 PM   #5
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    Re: Comment, Q, for Excecutor...others, tolerance,

    Excuctor, thanks for your response. I appreciate it, as always.

     
    Old 07-20-2008, 07:17 PM   #6
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    Re: Comment, Q, about tolerance,

    Confused,

    First of all, I do not get the sense that you have an addiction issue. Not before your latest post and not now. I would agree that pseudo-addiction is much closer to describing your behavior. (The only actions on your part that I would off caution on is "thinking you know better than your doc." I fully realize that those of us that do extensive research really can be better educated than our docs with regard to the specifics of opioids and the relevant intricacies of treatment. However, they have knowledge of human biology and anatomy that we can't even approach and they understand relationships between general classes of meds and our major organs that we do not. So when I read your comment about taking off prescribed patches and such I must admit the feeling I got was "this is a masked kind of self-medicating." This related to another comment I made about intelligence not always being to our benefit. All I will say at this point is be careful when assuming you know best. I say this with humility and not condescention because I have done so and it has not served me well.)

    My story - to keep it short - My knees are trashed. I was born with a congenital narrowing of the patellar channel so that my kneecaps regularly dislocated throughout my early years, and then again during sports later. I've endured so many surgeries to repair, reconstruct, debride, clean up my knees. I have not yet gone in for any modern knee replacements for a variety of personal reasons. I also suffer with Irritable Bowel Syndrome and Celiac disease, both gastro oriented and very painful. I get chronic migraines and now have a brain tumor that has caused a number of problems including growing frequency of headaches. I have been on most all of the opioids at one time or another, and undergone detox too. I am currently on MS Contin as my LA med and oxycodone concentrated oral liquid for BT pain. In addition I take Ultram and Cymbalta for pain (and depression).

    Regarding the fentanyl. I was taking 150mcg/hour of Duragesic patches when I began receiving defective patches (the first episode). I was also using 8 1,600mcg Actiq fentanyl lozenges per day. It looks like I probably got about three months worth of the defective patches. I ben noticing that my patches were going flat real fast, like within the first 6 -12 hours. The instructions I had from my doc was to take off and replace any bad patches. I reported the episodes of flattened patches to my PM doc but she didn't seem to know how to react, and continued to tell me to replace the flat ones. Well, as this went on through two months and into a third you can imagine how high my blood level of fentanyl was getting. I was putting on a new patch roughly every 25 hours. And, at times, I was leaving the old one on awhile to account for coverage as the new patch spooled up. Combine that with the lozenges and I was flooding my system with fentanyl. Finally I was hospitalized (I was dying from undiagnosed celiac disease at the same time which was another contributor to the hospitalization). My GP had a shrink come in and talk to me just to get a read on my mental state. What I didn't know was that he was also director of a drug rehab clinic locally. He went into this sales job of telling me that I was suffering from hyperalgesia (you can look it up) and attributed the increasingly poor pain coverage of the fentanyl to that despite rising blood levels. I was so beaten down I agreed and also agreed to detox. I really didn't know how else to get off of this med except to be supervised medically. So I suffered through the worst 5 days of my life - to this day it's hard for me to talk about. But I survived. Then, as part of the detox deal, I was forced into a 30 day rehab program where all they wanted me to do was admit I was an addict. Well, about a week into the program I received news from my pharmacy that I had been receiving months worth of bad lots of fentanyl patches, and was I having any problems. I was so angry I nearly flipped out. At least I knew I wasn't crazy, nor was I an addict.

    After finishing the program and being free of opioids I was prescribed suboxone. It was very helpful for pain. I took it for two months and it worked well. But at the end of tow months the doc cut me off and wouldn't prescribe any more as he didn't have room in his practice for new patients - I was only with him from the detox. So I went through WDs alone from suboxone. I returned to my previous PM doc who started me on 2.5mg methadone 3 times per day. Ultimately I was titrated up to 20mg 4 times per day methadone and it was the best pain coverage I ever had. Didn't even need BT meds. Then I suffered heart failure. My PM doc called my GP and said to watch out for methadone's reported ability to cause more frequent QT intervals (heart). So they agreed to take me off of the methadone and switched me to MS Contin (morphine). All this even though the cardiologist said that I did not have any issue with prolonged QT intervals. I am still on the morphine and oxycodone for BT pain.

    Bottom line is that detox will free you of opioid dependence. But it doesn't do much for pain. I probably would not have continued with the suboxone even if I wasn't cut off by my doc because it made me feel very jumpy. The effect is the opposite of euphoria, a very disquieting feeling. The switch from methadone to morphine went very well, to my surprise. Managing methadone titration is the trickiest of all opioid therapies. The morphine is working well with the Cymbalta, so no problem there.

    I would think you could do very well on methadone. It is highly potent, especially for those who have taken potent opioids before. And it works wonderfully. Like other opioids it has it's own side effects. Others here take it and can chime in. I don't know how well you could "rotate" downward to morphine or oxy directly from fentanyl, since mine was via detox, which I don't recommend lightly.

    Have you looked into methadone? And BTW, you do not want to take certain SSRIs with methadone either.

    My fingers are getting tired, and my brain is following suit. I'm gonna stop here for now. Please reply as you wish and I'll try to help as much as I can.

    I wish you the very best of luck!

    steve

    Last edited by forginon; 07-20-2008 at 07:31 PM.

     
    Old 07-20-2008, 08:33 PM   #7
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    Re: Comment, Q, for Excecutor...others, tolerance,

    Confused-

    Thanks for sharing all of your story....You've definitely been through a lot! Hopefully, we can get you back on track with your PM.

    Regards,


    Ex

     
    Old 07-21-2008, 12:13 AM   #8
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    Re: Comment, Q, about tolerance,

    Ok, it's clearly WAY past my bedtime and cutting back on this third patch is making my brain one big fuzzball: I lost my ability to quote [which I was SO proud of! ;-)] and I posted the same thing twice, but for one change. So, no more for me tonight....

    Last edited by Confused089; 07-28-2008 at 08:37 PM. Reason: Repeat post

     
    Old 07-21-2008, 10:50 AM   #9
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    Re: Comment, Q, for Excecutor...others, tolerance,

    Executor - thanks - been through a lot, but nowhere close to what some of the people on this board have experienced! You were right about patch 4 and beyond, not more than the equiv. of about 160 morphine [at most] in either one.

    Last edited by Confused089; 07-28-2008 at 08:04 PM.

     
    Old 07-21-2008, 03:44 PM   #10
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    Re: Comment, Q, about tolerance,

    I'm willing to bet that many of your problems are the result of using the Mylan patch. They are seen so negatively by some in PM that my Doc for example, forbids his patients from using them. He point blank told me not to use them and that if I did and had problems, not to call and ask for a new script or for help because he warned me upfront.

    Do a search on this board of "Mylan patches" and you will find a significant amt of negativity. Many have reported that after switching to them, they have gone into WDs. This may explain why you've had so many problems and why some last you so long. Conversely, when I've made comments about the patch length and etc., I have been referring to the gel filled....Duragesic, Watson, or Sandoz.

    Just wanted to throw this out there.

    Ex

     
    Old 07-21-2008, 04:24 PM   #11
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    Re: Comment, Q, about tolerance,

    Excecutor,

    As always, thanks. Didn't realize that the Mylan patches had so many problems. I have liked them because they are smaller and stick better. In addition, the Mylan's haven't had the recall and leak problems [as far as I know] that the gel filled patches have. I'll run a search - thank you.

    My apologies again for my comment a few days ago - I can only think that I was out of sorts that day [particularly if it was fri or sat when I felt most ill - you have certainly gone out of your way to help me - I wasn't implying that you hadn't. For some reason, that day, I had the feeling you were getting tired of all the questions [not to mention all the reading that went w/ my questions!]. I do think it is sometimes easy to misread someone feelings/intentions when there is no tone of voice or body language to help interpret the words. I am not a big fan of email for that very reason [or at least email as the main mode of commumication or mode of communication for tough topics.] Have to run to my acupuncture appt.

    I don't understand the release mechanisms on either patch [which are different] very well either....

    Last edited by Confused089; 07-28-2008 at 08:02 PM. Reason: Edited for clarity

     
    Old 07-21-2008, 06:52 PM   #12
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    Re: Comment, Q, about tolerance,

    Hi!
    Take this for whatever you will, ok? Dont take it the wrong way...Doctors HATE, HATE when patients start quoting from med inserts. Trust me. My sister works for a PM doc, and she has said that is their no. ONE turn OFF, and its just not her doc but she works in a group of them and has for 15 years.


    I know you are well educated, youve mentioned that a ton of times, but if you ever come across to your doc that you know more than them or have all of the info, it will probably not be in your best interest.
    I only know you from here, so I dont know if you would be that way in an appt, so if Im wrong, then let me know.

    I know you have tons of questions that youve posted and you should be able to ask any doc about any of them, but unfortunately, doctors almost always want to be right and the ego factor always is a huge thing.

    You have the right idea, just Id hate for you to have a doc send you on your way because you come across to knowing of something they may not know. Make sense?
    AS far as the post on the Addiction Board RE: Ex, no worries. Ex is like a sister to me, and I was just having her back, thats all. Dont sweat it.

    Like I stated before....Its bad when we cant go into our physician and try to talk to them about what we have researched, ect, but Steve hit it on the head in his last post to you. Im just trying to say the same thing~
    Have you asked your doc any of the questions you have asked us? If you have please pardon if I missed you stating you had. You have a ton of things you need answered, and I hope your doc will be able to help you.

    xoxoxox,
    IZZY'SMOM

    p.s. I was on the sandoz 75 for months then to the 50, then to 25, and then to 12.5 for a week and then nothing and didnt have any w/d. Guess I was lucky~ i was on the patches for at least a year or longer.

    Last edited by IZZY'SMOM; 07-21-2008 at 06:59 PM.

     
    Old 07-21-2008, 07:39 PM   #13
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    Re: Comment, Q, about tolerance,

    I am trying to be far more careful w/ doctors about what I know. Definitely not taking your advice the wrong way - I need more reminders like this. I actually *was* going to quote something from an RX handout, so your timing is impeccable. I think there have been one or two times when I haven't taken a medication prescribed to me b/c it was too risky - levaquin is an example. I read some frightening things about people's experience w/ the med. on the internet, and decided not to take it.

    Thanks for the continuing words of caution. Hmm, I know I have asked some of these questions of my PM - I always want more than one opinion though :-) I have asked about opiate rotation for example.

    Maybe the thing to do is to think about the questions/pts. ahead of time and then spend some time actively rewriting the question or the statement so that it doesn't come across as threatening.

    You probably saw my post about my last PM threatening to throw me in a psychiatric hospital if I brought up the issue about the med interaction again. His technique, while crude, was effective. I never said another word about it and just went through the months of wds in silence.

    No problem on the message supporting ex - I'm sure she was glad to have a good friend supporting her. I didn't think my post was nearly as strong as it apparently came off and I remember thinking later that I wasn't sure if I was right or why I'd written that. I got involved in posts over here and forgot about that post for a while.

    At any rate, hopefully everything is fine now....

    Last edited by Confused089; 07-28-2008 at 07:59 PM. Reason: same

     
    Old 07-21-2008, 07:45 PM   #14
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    Re: Comment, Q, about tolerance,

    PS, I envy your tapering experience w/ Fentanyl! :-)

     
    Old 07-21-2008, 08:11 PM   #15
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    Re: Comment, Q, about tolerance,

    "You probably saw my post about my last PM threatening to throw me in a psychiatric hospital if I brought up the issue of the drug interaction again. His technique, while crude, was effective. I never said another word about it and just went through the months of wds in silence. "


    OMG NO! I didnt see anything of the sort. Wow. Thats just crazy. What the **** brought THAT on? Do you know if that is in your records following you around? Yikes~ Im off to bed...I have a ton to do tomorrow~
    xoxoxox,
    IZZY'SMOM

    Last edited by IZZY'SMOM; 07-21-2008 at 08:11 PM.

     
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