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PostPosted: Tue Oct 05, 2010 9:31 pm 
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I have not been on the site for awhile... but quick recap. been on subutex now for 10 months. successful months. weaned down from 12 mg to between 4-6. I live in Palm Beach Fl and my wonderful dr is conducting a study for the New England Journal of Medicine using Fentanyl to come off subutex - here is how it works and the principals behind it. The reason why soooo many people have a hard time or "cant" come off is obviously due to the long half life and the never ending Paws blah blah blah... Fentanyl is the only drug that can break through the sub. my dr. prescribed me 2 patches (50 mcg) to use for 3 days concurrently. The Fent will rip ALL the subutex off of my receptors thus handling the buildup factor. after day 6, no more fent, a combo of clonidine and clonazapam 3 times a day to handle the short withdrawal from the fent but it will not be nearly as bad as either a full antagonist wd or sub and the reason being that because sub is a partial agonist, the receptors "opiate needs" have atrophied over the past 10 months. the Low Dose Naltrexone is compounded and there is only 2 pharmacies in the country that make it in the ultra low dose of 1.5 mg and one is 15 minutes from my house! this will boost my endorphins and help me feel better while also acting as a bit of a saftey net against a relapse. I dont know what will happen, but I am starting tomorrow night, my birthday. I will keep you posted...


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PostPosted: Tue Oct 05, 2010 10:37 pm 
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I didn't know naltrexone had any potential to help with anything withdrawal related except to throw you into withdrawal if you were on opiates. I am curious to see what happens with this. Not to burst your bubble or anything, but I am highly doubtful this will do anything to help manage PAWS. I think it is going to suck. But I am still curious. You are brave.

Cherie

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PostPosted: Tue Oct 05, 2010 11:48 pm 
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There is a theory about low dose naltrexone that if you take it before sleep it causes your brain to produce more endorphins. LDN is used for a bunch of autoimmune illnesses - MS, lupus - and I think it's used to boost the immune systems of HIV positive patients. LDN is a way way lower dose than what's prescribed to work as an opiate blocker. There's tons of info on the internet, but not a lot of controlled studies because there's no money in it for any pharma companies because naltrexone is an old drug. I tried to get on LDN for my fibro but I haven't found a doctor who takes my insurance who is willing to try it.

That said, I thought you had to be off opiates before you started the ldn, but who knows. I don't really understand how coming off fentanyl would be any easier than just tapering off Sub, but I hope it works out for you.

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PostPosted: Wed Oct 06, 2010 9:46 am 
MW....wishing you only the best with this method of discontinuing Sub! I'm quite interested in it actually. Not that anyone around here where I live would be progressive enough to try anything 'different!' But I do want to hear about your experiences with it.
I really only have one concern about the ability of this to work out well. I'm concerned that you've only tapered to ~4-6mg/day. I think I'd feel more positive if you'd been at 2mg or under for a couple of months. I don't know if that really makes that much difference but it just seems logical to me that the lower and the longer you've been low, the better this would go. I have heard from another poster that his doctor also believes that there is something 'different' about Fentanyl in terms of its ability to 'break through' bupe. However, I've read some accounts of Fent (even IV) being given in large doses on top of Suboxone and doing nothing to superceed the bupe's blockade effect. So, we'll just see how it works for you and hope for the very best! Now I do think, at the very least, what the Fent will do is cover the acute w/d from the bupe, so that experience won't be awful. I almost think I'd wait till about 48 hours off Sub to slap that patch on though, but that's just me.
As far as the LDN...sounds good to me. As DOAQ said, it's really not a new concept and what you're doctor has told you about its potential helpful effects is consistent with what I understand about it. DOAQ voiced some concern about being off opiates first.....My understanding is that you will be, right? You won't start it until after you're off the Fent patches? Again, I am so very interested in how this works out in terms of helping with PAWS. As you and everyone here knows, that's my biggest concern and I pray everyday that I won't have that again after stopping bupe.
Anyway....this is about you. Pleas keep us posted. Happy Birthday! And I'm rooting for you my friend!!


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PostPosted: Wed Oct 06, 2010 2:06 pm 
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I worked with fentanyl as an anethesiologist and know it very well-- it was my 'drug of choice', and is the drug of choice for most anesthesiogists.

People can believe what they want to believe; I'm far beyond the point of arguing so I'll say my piece and move on... fentanyl is just another mu agonist-- a very lipophilic molecule that is very specific for the mu receptor. It has no special qualities other than that; it works in a fashion identical to oxycodone, hydromorphone, or diacetyl-morphine (brand name Heroin). I withdrew from fentanyl ten years ago before residential treatment, and had the typical fentanyl withdrawal experience-- days of thrashing around uncontrollably, unable to walk the lenghth of the hall in the hospital for several days, and then sick with 'moderate' withdrawal, if there is such a thing, for a couple months.

Fentanyl, by the way, found its way into Heroin in the upper Midwest about 5 years ago; the Herion was called 'China White' and the fentanyl was added presumably to give it more of a 'kick'. There were a number of deaths from that extra kick... fentanyl, being lipid-soluble, crosses the 'blood brain barrier' more quickly than most opioids, causing very rapid respiratory depression, which is more dangerous than something like morphine, where the respiratory depression develops over a few minutes.

Fentanyl has a biphasic elimination; the first part of the offset of the medication is when the drug redistributes from the brain to fat stores in the body. That is why a small dose, say 50-200 micrograms, wears off quickly (in about an hour or two). But the elimination of fentanyl takes place at the liver and is a SLOW process-- much, much slower than the elimination of buprenorphine. Cardiac anesthetics used to consist of high-dose fentanyl (done many of those anesthetics myself); we gave about 50-100 micrograms per kg of body weight.. patients then stayed intubated after the surgery and overnight, breathing on their own at some point the next day when the fentanyl was finally broken down enough.

There are studies in the UK for treating opioid dependence using Heroin. It works just like treating opioid dependence with methadone. Using fentanyl is the same. They are all simple mu agonists, some more potent than others.

It is patently false to think that fentanyl has 'easier withdrawal' than buprenorphine. The notion is inconsistent with personal experience, from experience treating others, and from a perspective of scientific knowledge.

Of course, I always think that the obsession to 'get off buprenorphine' is a waste of energy; the vast majority of people only end up using again. The phrase 'looking a gift horse in the mouth' comes to mind; people who have become SO desperate, losing so much to the obsession for opioids..... and then once relieved of that obsession, become embittered to the very medication that offered a second chance at life. As I've said a million times, it is not about whether a person takes a medication or not-- addiction consists of the mental obsession for 'more.' Buprenorphine offers many people the chance to let go of that obsession-- I don't understand why instead of appreciating that second chance and making a good live, some people just keep on complaining, blaming their misery on buprenorphine. Opioid dependence does not go away; the sooner a person understands that fact, the sooner the person can appreciate that we finally have effective medication for opioid dependence, and get on with life!

This last paragraph is, of course, only one person's opinion.


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PostPosted: Wed Oct 06, 2010 2:52 pm 
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Wow, thank you for all of that, doctor! I have to admit that when I was reading the above posts I was quite skeptical of this method myself.

Suboxone has been a wonder drug for me, has revolutionized my life, and has allowed me to feel normal for the first time in almost 20 years. I cannot say enough about it and my fervent hope is that I will be blessed and lucky enough to be able to take it for the rest of my life.

I recently had a total knee replacement and was told by my MD to continue to take 24 mg of Sub per day before the surgery, and they would just titrate pain meds to effect afterwards. I was assured that I would be fine. I took it upon myself to taper a little but I still had a considerable amount of bupenorphine in me at surgery time. If you can imagine having your knee removed and a prosthetic one put in with no anesthesia, that is what I went through for 48 hours after waking up from surgery. Seriously. They tried, but all the king's horses and all the king's men could not do anything for me until the Sub wore off and the pain meds started to help. I didn't know it was possible to experience that kind of agony and suffering, quite honestly.

I think that this is what people are afraid of, they're terrified that something will happen - they'll need emergency surgery or that they'll have an accident or something like like that, and they will have pain that will not be able to be relieved. This fear is why they keep trying to decrease their dose or get off of the med. That, and the cost.

For my part, even after going through what I did, I plan to stay on Sub as long as I can. But everyone is different, to be sure.

~Rossma


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PostPosted: Wed Oct 06, 2010 7:30 pm 
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one of the reasons I stopped visiting this site was I felt that there was not alot of support given to me (which is very different that not hearing what I want). I am a therapist, remember? active listening is not a trait many people possess... I never claimed to have a problem with subutex if it were working great! I am not trading one opiate for another either! My doctor, who is quite respected in the detox field is STUDYING a new way to help people off if that is what they choose. LDN is an option to consider long term as well! the second poster is correct in the mass difference between the meds used to reverse an overdose and LDN which when used between the hours of 11 PM and 1 AM boost endorphins drastically to help feel better. the fentanyl is a trial. it is a trial ONLY in that it has been proven to be strong enough to rip the sub off the receptors and allow for a patient to try shortening the detox process. I am aware I will have wd from the 2 patches, and will be monitored closely, however if one wants to taper, great! stay on indefinitely, great! as long as we are all alive and opiate free somehow. SMF, it does not matter what dose I am at before I began the patch, I asked that question several times... this study is a big deal in offering another way to move on, if that is what one chooses. over 10 months of being on sub, I have learned alot about myself, about the role opiates played in my life and finally felt ready. the doctor chose me as a candidate for this study because he felt that I had certain tools to set up for success. no motive for him personally, he is a wonderful doctor.... if you are interested, i will keep you posted but I wish each of you well in your journey. Dr. thank you for taking time out of your busy schedule to write, I appreciate it sincerely and value your advice, and experience.

Best,

mw


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PostPosted: Wed Oct 06, 2010 9:19 pm 
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Dear mwflorida,

Please please please don't stop coming here because of something I had to say! Hell, what do I know? I was quite interested to see how you made out with this. Everyone is entitled to his/her own program and I don't want to give you the impression that I was trying to runs yours.

I have been quite excited since I found this site a couple of months ago after being isolated for over a year due to not being able to walk and having a bunch of stairs to go down to get out of my house. I've been reading and reading, and maybe I run my mouth too much, I need to look at that. I have been quite alone with no one to talk to, and then I found you all. Perhaps I having been jumping in with my opinion too often. But it's just my opinion. That and a buck-75 will get you a cup of coffee.

I consider being able to read these posts and reply to them a privilege and would be horrified to think that someone would leave here because of something I said, or if I gave you the impression that you are not getting support here. Please come back and let us know how you are doing with this. I honestly would like to know and I think others would too.
~Rossma


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PostPosted: Wed Oct 06, 2010 9:57 pm 
MW...just to clarify....I hope I didn't say something off-putting to you in my reply. I'm behind you 100% in your efforts to get off Subutex. I only questioned the process in regards to going from 4-6mg/day into the program. For some reason, it just seemed like it would be more advisable to have been at a lower dose for a while first. I guess I base that on the assumption that something 'happens' at the lower doses to better prepare us for life off Sub. Obviously your doctor has assured you that it shouldn't make a difference, so I'm sure not here to argue the point.
We just hear over and over that if (and sometimes I almost feel like I'm made to feel foolish for doing so) we want off this drug that the ONLY way to do it comfortably is to go through this long, tedious and somewhat miserable process of ongoing, seemingly never-ending weaning! Which I've obviously not done real well with. I'm really tired of it. I feel like I'm damned if I do and damned if I don't sometimes. Contrary to Dr. Junig's well-earned opinions about it, I want off this drug. I no longer feel "normal" on it. I absolutely don't want to be faced with a life-long dependency on it. And when I say that, I mean absolutely no disrespect for those who feel differently. But for me, personally, it is not what I want for my future. I think a lot of what has kept me on as long as I've been on and a lot of what has made it hard for me to get under 1-2mg/day is plain and simple fear. Honestly if I were offered a way to do it as you have been offered, I'm pretty sure I'd try it and hope for the best. At this point, I've decided that it's time to try another way for me. Trying to taper below 1-2mg/day has not been successful and for seemingly no truly distinct reason other than fear and just games going on in my own head. As of right now, I have again deviated from my most recent plan and have actually not taken a dose of Suboxone in 3 days. I just got sick of thinking about it and the more I think about it, the more I think I need to take the Sub. So I decided to just not take any and see what happened. Oddly, this is the plan my doctor originally prescribed for my taper. He said once at 2mg or less, to start skipping days and just dose a little as needed and eventually you'll find yourself free. So what the heck! So far, all I've had is a runny nose and some aching in my legs.......my mood is (believe it or not) better than it has been in weeks and I'm sleeping just fine. Tomorrow may be a new story and if things are too unbearable I'll allow myself the tiniest piece of Suboxone to abate the withdrawal, but that's it. This may be the only technique that will have a chance at working for me. No way is going to be easy. I think we all just have to find what works best for us.
MW...again, sorry if I offended you with my question. I really am behind you and I understand where you're at, I think. I'm there too. I just want to be done. Time will tell how successful we are in the long run. But I have high hopes. I have zero drug cravings now. And all this time I thought if I were to miss a day or certainly 2 days of Suboxone at the lower doses I've been on, that I'd surely be in Hell by now. Hasn't happened. I will continue to be positive for you and I both. Please let me know how things go for you. Attitude has so much to do with it. You sound positive and ready, so don't let anyone bring you down. This is your goal, your plan, and you're going for it. The good news is that we have learned so much during this time on bupe. I believe we're going to be fine!


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PostPosted: Thu Oct 07, 2010 8:13 am 
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MW,

I certainly didn't intend to say anything to be unsupportive either. I didn't think anyone else was unsupportive in their comments. I am unsure of what you expected people to say to you about this. I remember the thread before you left the last time. I remember you posting that you had stowed away some vicodin and were saying this was why you could never get off suboxone because your mind still had this natural reaction to obtain and store opiates. You weren't going to take them and were just explaining to people how your mind naturally went for them when you saw them. People were quite concerned that you were holding onto them. This wasn't that long ago. Probably 7 months or so? Did you get rid of those vicodin as recommended by everyone after you left? Is your doctor aware of this? Have you made a recovery plan? I didn't hear you mention anything about a fear of going back onto a powerful opiate. I'm not accusing you of not thinking about or fearing that, just noting it because I would be terrified. I can't take any addictive substance and to the best of my knowledge, this drug is addictive.

I am not saying any of this to be unsupportive. I am saying it because I am concerned about this method and concerned for your safety. I don't think anyone has been unsupportive of you and I don't think (the majority) were unsupportive back then. I don't think being a therapist makes you immune to the trickery of the addict mind. I think when you left the site the last time it was in fact because you heard things you didn't want to hear. I do think that your constant reminder to everyone that you are a therapist came across like a constant reminder to everyone that YOU are different and that YOU have more skills and ability to handle this (including keeping vicodin hanging around) BECAUSE you are a therapist. Your defensiveness tells me that there is cause for concern.

People care, and therefore say things you may not want to hear. All things that most likely have gone through your own mind if you are truly ready to try this method. If they have gone through your mind, can you really blame others for having the same thoughts? If these things haven't gone through your own mind, do you really think you are ready to do this?

If everyone on here read your post and simply replied with "great idea", "I can't wait to try this myself", "I think you will be totally successful with this" then that would be naive and pollyannaish given the statistics. I can't really emphasize enough that people are in fact supporting you and trying to be there for you which is WHY they say these things. At least then if you encounter problems there are people who understand while despite your being a therapist, this might not go well or might cause some issues for you. The reverse would be them saying "well I thought you were a therapist so you shouldn't have these issues. Maybe you shouldn't be a therapist (which would be stupid) because you have problems just like everyone else". Is that a place you would want to be?

I do honestly wish you the absolute best in getting off suboxone. If someone else can find an easier way then that gives me more options. What are you wanting people to say?

Cherie

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PostPosted: Thu Oct 07, 2010 2:41 pm 
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I guess my largest question here is what kind of a study is this? Is this a large, multi-center, triple digit patient, study that is peer reviewed and IRB approved? Or is this a single center, small study, of a couple dozen patients. OR - just perhaps - is this just your doctor trying out a theory on a couple of his patients and you happen to be one of them? I certainly hope that is not the case but that is just the hunch that I get. I would just hate for anyone to become a guinea pig rather than a study subject. True, honest, bonafied research studies take a lot of time and often a lot of money. They are not at all simple to do. I have personally had to go through all of the hoops and hurdles to get a study IRB (Internal Review Board) approved and then conduct the study. It was a huge undertaking and this was just a "small potatoes" study. For one thing, I wonder how he will get around the laws of providing Fentanyl for addiction - rather than for pain. I wonder what the IRB would say about that?

I won't go on and on about it. I was just trying to point out why I see these red flags and why I ask the question. And certainly you don't have to answer, but I am very interested in this study and the first thing to look at when judging the validity of a research study is the study design. That often is a very huge component and makes all the difference in the world when judging the validity of the study results. I think it is great that someone is thinking outside the box and looking at new and improved ways for treating opiate addiction. There is just a huge difference in a large, bonefied, research study and a single doctor trying out a theory with a patient or two. Please don't take this the wrong way. I am not trying to shoot holes in what you are doing. I'm really not. I am just trying to get more information on the quality of the study that you are participating in.


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PostPosted: Thu Oct 07, 2010 4:51 pm 
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mwflorida wrote:
one of the reasons I stopped visiting this site was I felt that there was not alot of support given to me (which is very different that not hearing what I want). I am a therapist, remember? active listening is not a trait many people possess... I never claimed to have a problem with subutex if it were working great! I am not trading one opiate for another either!


WOW, no offense, but you jumped to quite a few conclusions there without much supporting evidence. I see a lot of very supportive, polite and considerate feedback here. Your response is, frankly, baffling to me.

I don't know when you started visiting this site, but from the moment I arrived here I have received NOTHING but support and positive guidance. I would hate for someone who is new to read your post and misconstrue.


IN any case, I thought it might be worth mentioning that when I had my liver biopsy last year I was given what the intern described as "enough dope to knock out a rhinoceros" It was fentanyl, and it did absolutely NOTHING to me. Zilch, nada, squat. They might as well have given me a baby aspirin. At the time I was taking 6mg of bupe and had not taken my dose for 72 hours, meaning, I probably only had about 2mg of it in my bloodstream.


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PostPosted: Thu Oct 07, 2010 8:28 pm 
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hello all, it is exactly 24 hours since applying the first fent patch and maybe 10 hours before that I took a 2 mg sub (straight from dr office with his permission). I may have used the wrong word in saying unsupportive. I think a more accurate feeling is that many people dont really listen, or really read what I have said, rather jump to share their opinion on what they think I have said, though NONE with bad intentions :). For the person who questioned the validity of the study, I appreciate the questions, and believe me, I am not a novice when it comes to the nitty gritty of validity of a study. I have a dual Masters degree in statistical analysis and am quite versed in a shady study and a proper study. This study is being conducted and the abstract has been accepted by the NEJM (as I did say in my first post), and the owner and head physician of the detox center I am fortunate enough to have found is well respected (I conducted a thorough paid background test), has published numerous articles and studies and speaks around the state to other physicians. I just would have liked for people in the same boat as me to take a breath and really read what I wrote before jumping in with opinions, though thoughtful opinions (which agree with or disagree with me) are always welcome! I have a very good grasp on the biology of the clusterfuck going on in my brain right now, and today I feel markedly better. not high, not low, a bit flat and tired, but overall, good. my doctor told me if I have any anxiety that cannot be managed in 15 minute incriments (meaning, see if it passes), it is medically OK to take a half of a clonipin, which I have not needed to. the staff has made themselves available to me for any questions at all. Subdoc, with true all due respect, I am just a bit surprised that you would not be open minded to another well respected physician, such as yourself, who may have stumbled on another method of helping those that are ready to move on to the next step. He also reassured me that staying on LDN longterm has no adverse health effects and can be stopped without incident. I will keep you posted if you all would like... I am prepared for the difficult days (from what I was told) to be days 7-11 so I will keep you to date!


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PostPosted: Thu Oct 07, 2010 10:03 pm 
Thanks for coming back MW! I agree with you...sometimes some of us (myself included) read through posts rather quickly and make snap judgments based upon our own biases and experiences and then post a reply that has somehow made the OPs post turn into the replier's post, if that makes any sense!
I am in the same boat as you....wanting off Sub and finding it more difficult than I'd like it to be. While I'm not in a terrible place with where I am right now, I just know it's not what I want forever. You mentioned something like "I never claimed to have a problem with Subutex if it were working great." Are you saying that it got to where it wasn't working great for you anymore? I think at first you seemed to be doing really well with it. Do you know what, when or how that changed? Because I feel similar.....I just don't feel like I'm supposed to stay on it. I definitely don't feel as positive about it in some ways as I did in the beginning. I don't mean that to sound like I'm speaking 'against' the drug because I'm not. I still think it's a wonderful drug I just think maybe for some of us, something changes during the course of treatment. I don't know. Just curious, if you're willing to offer any insight into your feelings about it.
If so and if not, I still hope you'll contine to post about how this works and I'm glad you're feeling okay today.


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PostPosted: Fri Oct 08, 2010 12:22 am 
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Hi, mwflorida, my birthday was yesterday too (Oct 6th). I made 25. Hope you had a good day. I wish you the best in coming off the suboxone. Please keep this thread updated with your progress and experiences as they are literally priceless. Keep a positive mind. Stay strong.

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