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PostPosted: Wed Oct 20, 2010 5:44 am 
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Good Morning!

Yes, its 5:31 AM but I woke up after my 2nd day on the LDN and I feel --- GREAT!!! This whole experience, new way gave me focus, and a motivation that I needed to shake this monkey off my back and I promised I would keep you updated. Once again, to recap - I was part of a clinical study to HELP people successfully wean off Sub without the drawn out PAWS, wd, etc... I was on sub for 10 months with a wonderful dr (makes a HUGE difference) and I learned alot over that time.... and I will forever be grateful and will NEVER bash sub. I learned about myself, humbled myself, stood up to nasty pharmacists, and took the shame out of addiction, at least for myself. Now getting off and having a plan. I jumped at 6 mg and 6 hours later put on a 50 mcg Fentanyl patch for 3 days, then another one for 3 days (clinical protocol). the purpose per my dr is that Fent is the only drug strong enough to rip the sub off of the receptors (which has been disputed by several on this site, which is OK, but my dr is who I chose to follow) thus leaving my receptors "clean" and avoiding the buiildup of the halflife which drags on and on.... Fent came off and I had to wait 4 days before starting the Low Dose Naltrexone, which again is VERY different than regular Naltrexone, usually 50 mg to reverse overdose. I am on 1.5 mg which when taken at bedtime surpresses the endorphin system between 1-3 AM and forces the brain to ramp up endorphins which helps with mood, energy, motivation AND reduces cravings and acts as an opiate antagonist. first night I took the LDN, i expected fireworks the next morning, woke up and felt... ok. a bit better, but not amazing... still needed my comfort meds, but alot less - fyi, Baclofen is fantastic for the kicking and achy bones at night. took my LDN last night, woke up early even though my kids are not up, and felt GREAT! giddy almost! happy, and enough energy to write to you all! just so you know, LDN is dirt cheap, about 15 dollars for a months supply. there is a compounding pharmacy called Skips Pharmacy in boca Raton, FL that is well regarded and they DO ship with a faxed prescription. there is also a website called www.lowdosenaltrexone.org which gives more info... Best to all!

M


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PostPosted: Wed Oct 20, 2010 7:34 am 
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Thanks for posting that. I would be interested in seeing the research article once completed. Would you mind posting it once it is available? If the study reflects overall the same results as you have, and was published, the doctors might consider it as an option. Unfortunately for most, I think it's a non-option until then. Bummer. Great for you though. Congratulations! You were very brave to give it a shot.

Cherie

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PostPosted: Wed Oct 20, 2010 2:45 pm 
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wow glad to hear such great news come from this stuyd. im really happy for you and excited that his worked for you cause just maybe this might become a wonderfull thing an can help all of us when we are ready to kick the sub!


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PostPosted: Wed Oct 20, 2010 9:28 pm 
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Great new!! :D :D Thank you for coming back and letting us know!! I hope this becomes a new approved methed of detox from subs please keep us updated!!


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PostPosted: Thu Oct 21, 2010 12:37 am 
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For everyone that has seen my posts, my husband went through the exact same thing as I did, he did not want me to mention him out of privacy concerns. I am at 2 weeks off 4mg Suboxone & did not suffer, nor did he...infact felt like mwflorida, but without messing with fetanyl(which I have used before, suckers & patches). Being in the same area as which is referred, they will write out & give out everything. My husband is just itching to say something now, so without any disrespect to anyone, I pass the computer to him:
--->Let me start by saying that I can tell you fentanyl would be the last thing any good doctor would ever prescribe to someone who is attempting to get off of opiates. I am the poster boy for subs, so they would have contacted me first......LOL... I used to take up to 175 mcg's a day by cutting the "bandaid" open & suck out the last drop, then chew plastic which had remnants. After 2-3 hours I'd get out my suckers(400 mcgs) bite it off, throw the stick away, chew & swallow. I did this to the point when I moved to the S. Florida area the only thing to help me was 12-14 methadone & on top of that, oxy's were like candy & did nothing, even after snorting 3-4 at a time! Then I found the addict's magazine called "New Times" S. Fl magazine. The doctors here will cater to your every want with addiction. I was given 200(30's M) Roxy's, plus 210(15's M) my first visit, which lasted about 12 days, then I was off to the next doctor. Fyi, I still had my methadone too(from another doc)! When I decided to get off & stay off I personally was seeing at least 1 doc a week, sometimes more, and faking my own pharmacy reports & MRI's(which my wife was really good at doing for me). Really, think about it this way, when our 4th baby was born, after the docs left the room, I grabbed a needle & extracted her epidural medicine(which has fetanyl) from the machine next to my wife & put it in an empty water bottle for later. These are the things addicts will do just to avoid withdrawals! My suboxone doctor stressed that I should not touch ANY opiate for a minimum of 10 years, if I require surgery again I am to tell them I have been addicted to opiates & used suboxone to stop. A common misconception of suboxone withdrawal is that it will be rough too, this is not true. I tapered to 2mgs before I jumped. Why would a doctor, knowing you are an addict, prescribe an opiate, let alone one as strong & addictive as Fetanyl. If there is a doctor in Boca prescribing suboxone then giving you fetanyl, then that is a dangerous doctor. The doctors here do not take fetanyl lightly, when they saw I was on fetanyl, they thought I had cancer! Here in south Florida there is an epidemic of prescription abuse, roxy's were haulted temporarily by the dea here, so this caused alot of people to go to suboxone for immediate help! Luckily when all the raids happened my wife & I had just stopped. The same day the DEA took down the main distributors, I was sitting in my suboxone doctors office, and the people started flooding in! I have personally met doctor after doctor that will gladly take you from one addiction to another. Once you are determined you are done getting high & ready to put a stop to the constant madness/lack of control, you will find suboxone. Going back to opiates is not an option...PERIOD! You will be fully addicted again. I hate to say it, but it sounds like local advertisements that I have seen & read, especially with naming the Pharmacy carrying the "wonder drug." Sorry this is long, but this is the only way people will know I am being honost & forthcoming. Honostly, 6 days of fetanyl is undoing everything you have done, the "half-life" of suboxone will NOT block all that fetanyl. Then you may(and most likely will) find yourself more addicted than when you began suboxone!
As a footnote, my aunt was found dead after taking fetanyl, and she used everything prior to her death, but the good ole patch did her in.


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PostPosted: Thu Oct 21, 2010 7:04 pm 
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I guess I'm not sure what your point is? What was your point in all of that? Was it to say that taking a relatively low dose of Fentanyl for six days is going to do her in, or relapse her back to full opiates?

Here is the deal; I am not actually a "fan" of what MW and her doc are doing. So I'm not here as a cheerleader for this. However, let's be realistic here. She was placed on the second lowest dose of Fentanyl available - 50 micrograms. That is the same dose that many opiate naïve pain patients are started on - not all as some are started down at 25 micrograms but many start at 50. She was given this for six days - two patches. Their hypothesis that Fentanyl "rips Suboxone off the receptors" I think is false, I just don't think that it does this. However, let's say that it does, after being on any moderate dose of Suboxone, getting 50 mics of Fentanyl is not going to have much effect with most addicts. Tolerance after being on Suboxone is just too high. Getting 50 micrograms of Fentanyl is just about the same as taking a 5 mg oxycodone.

What I’m saying here is I really have to wonder if this whole thing is not pretty much a non-issue. From everything I have read it seems to take about five days post Suboxone before opiates will really start to work. I have been told by my personal physician that Fentanyl is able to push past Suboxone better than other opiates and have some level of effect. I have seen other physicians make the same claim. I have never seen, heard, nor read anywhere (other than here) that Fentanyl has the ability to "rip Suboxone off of opiate receptors.” That is a first for me. Again, my point is, just about the time that the Suboxone is out of the system, day six has arrived and the Fentanyl is discontinued. So what we have is...

1. It is questionable how much 50 micrograms of Fentanyl will get through with Sub in the system.
2. Even if Fentanyl does break through, 50 mics is a somewhat low dose for a "normal" person and a very low dose for anyone with opiate tolerance.
3. At the end of six days of Fentanyl, the Suboxone is just about out of the system as well.
4. Regardless whatever does happen with the Fentanyl/Suboxone fight for receptors, either way, the patient is going to get less opiates in their system for a total of six days before they get no opiates in their system.

I just don't see Fentanyl doing much of anything here, and certainly is not the evil be all end all of doom and destruction.

This LDN stuff also seems to be very much in the experimental phase. I have read more about it and it seems to have been tried or is being tried for a huge variety of illness from HIV to cancer to Alzheimer’s to arthritis and on and on. The list is nearly endless. Snake oil comes to mind. The major problem is there are not many GOOD studies to show that it works – or that it doesn’t. It strikes me nearly like the infomercials on radio and TV trying to get you to buy this pill or that potion. LDN’s use for narcotic addiction is even newer.

At the end of it all, I'm not holding my breath that any of this is going to do much of anything. Dr. J seems to be in my camp, or more correctly, I'm in his camp, about this little trial. (based on his comments) Who knows, perhaps we'll all be proven wrong. I just don’t think that the study being done will show that. In fact, how could it? Just basic study design would tell me that they would need to take about 150 patients, have 75 of them do the Fentanyl/LDN protocol and have the other 75 do a more traditional detox from Suboxone and then compare the data and results of the two groups. I don’t at all get the feeling that is what this study is doing. In fact, I don’t get the feeling that this study is doing anything close to that. But, then again, I don’t have all of the information, so who knows?

All of that brings me to these final sentences. Here they are: I don’t think that this Fentanyl/LDN protocol is going to help nor harm anyone. It’s not likely to turn patients back into active addicts nor will it help them to get off Suboxone with less discomfort, but it’s also not likely going to do any harm either. Like it or not, Suboxone is a challenge for many patients to get off of and often results in relapse – regardless of what method is used to stop.


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PostPosted: Thu Oct 21, 2010 8:03 pm 
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I have to disagree with you, have you personally used fentanyl? The fact remains fentanyl is highly addictive, and to go from percocets(which I read in one of the earlier post) to suboxone, right over to fetanyl is ridiculous! A steady dose of fentanyl may end up causing relapse, we already know we are addicts. Why not just start giving coke to crackheads to "help" them. I find the entire story bs and I am calling it as such, infact I did call my doctor today just to ask if she would EVER recommend that & she laughed. My concern with Fentanyl is a patient would keep the patch on for a minimal time, and then would be off to the races. This is the main reason this would not be recommended, relapse is too risky. I still find it highly suspicious that there is a nice link & pharmacy to guide you. I was on suboxone for 6-7 months, mwflorida says they were on it for 10 months. Could it be that mwflorida just isn't having withdrawals like my husband & I? Like I said, I felt the same way without extra crap, maybe people should see how your body does before pumping another drug into our bodies! I am calling it like addiction is, dangerous & not to be tempted, surely right after getting off suboxone. And as for Fentanyl being weak, are you kidding me? And if it knocks suboxone off receptors, then you are most certainly risking relapse. I am also confused about mw's other posts, the timeline of use didn't add up, and both suboxone & subutex were mentioned...which one? Some posts I have come across seem to look like giant ads such as this one trying to push another drug. Suoxone is supposed to be the end of the road, not used to just help circle the block for a bit. What would be the point then? My husband & I BOTH did NOT have any issues getting of Suboxone, and had we, we would have tapered more. If someone should not take their regular medication that they were addicted to for years, why on earth would you switch to another. Absolutely patients will have different stories based on use, duration, etc. But going back is not worth the risk. I expected to have withdrawals, I braced for them, I know we have beaten our bodies to the core. I was lucky, but not stupid, I knew prior to quitting that my body may have to re-adjust to a brain/body without something. You are wrong about Fentanyl being given to people without prior opiate use( in average cases)! Unless if you have cancer, a doctor is not going to start you on fentanyl. Also, why would they give people a steady dose of fentanyl patch when the lollipop version could be used to keep withdrawals at bay, a steady dose is dangerous to non addicts, let alone addicts. You said you don't see how fentanyl can do much harm, are you suggesting possible relapse isn't harmful? I have to disagree! The point of my post, cause you asked our point, was to show just what my husband & I were on & doing, and why that would be tempting fate. Again I will say that if someone was addicted to percs only, then suboxone, fentanyl can take hold & give the body the false sense of security of the "high", which the body has been proven to remember...and that is dangerous & harmful!

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PostPosted: Thu Oct 21, 2010 8:51 pm 
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"have you personally used fentanyl?"

Unfortunately, the answer to that is a big fat YES. It was pretty much my drug of choice (DOC) for about four years. Not only did I "administer" it to myself, I have nearly 25 years of experience in healthcare and have administered Fentanyl to hundreds of patients. If that is not enough, I actually conducted a three-year research study involving approximately 150 patients that looked at using Fentanyl in the pre-hospital setting. I know a thing or two about this drug.

Not only cancer patients are prescribed Fentanyl. I can assure you with 1000000000% certainty that 50 micrograms is a low dose and is indeed about the same as 5mg of morphine, which is also about the same as 5mg of oxycodone.

I most certainly do not advocate this method. I would not try it myself and I would not recommend that others try it either. I also do not think it is nearly as "Oh My God, over the top" dangerous as you seem to.

"I did call my doctor today just to ask if she would EVER recommend that & she laughed."

More than anything I am actually most impressed that you were able to contact your physician in such a short time-frame and actually get them on the telephone, just to ask and laugh about this study. Too bad all of our Suboxone docs are not this available and responsive to us.


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PostPosted: Thu Oct 21, 2010 10:50 pm 
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Well, in regards to my doc, I am lucky...no doubt. I searched doctors for a while before choosing. And I never said they ONLY give to cancer patients, but it is surely not readily available for pain as a first, second, even third option! My husband happened to get it because he is a disabled veteran, so no you can be blown up in an IED too! So based on what you say is your "healthcare experience" and administering Fentanyl to 100's patients, yada-yada, what was the average original diagnoses that lead to Fentanyl. As for 5mgs Morphine...liquid or pill, cause there is a difference in effect...but you should know that. How is your healthcare career now if thats your "doc" & you give it to patients...or are you referring to "healthcare" that does means out of your house/corner. Addicts do NOT take medicine as prescribed, which especially with Fentanyl can KILL YOU easily, they just go to sleep & stop breathing...but you know this. For you to suggest that there is no harm in Fentanyl is pure & simple stupidity, ask any doctor...not someone in "healthcare" which is way too vague...people who need Fentanyl "administered" to them are typically in severe pain, such as cancer! Sounds like I have angered you, which was not my intent. But, if what I said can save even 1 person from relapsing or death...so be it. I have heard of people using a lighter opiate to help them come off suboxone...but Fentanyl, no. And that is only hinted, and not recommended, to the people who are likely to not relapse. Who is best to profit from relapse....? The healthcare field...hmmm?

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PostPosted: Thu Oct 21, 2010 10:57 pm 
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Before you get angry, where is MWFLORIDA...relapsed, who knows. Thats the thing about computers, never know whats going on behind them. Or who's profiting from this! I am profiting from freedom. LDN, who knows, fentanyl though...I know better!

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PostPosted: Sun Oct 24, 2010 11:18 am 
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I'm just going to but in here for a brief moment to say a few things. First is that Don knows a lot about fentanyl and those of us who have been here for a long time are aware of that. Second is that I wouldn't use MWFlorida's suggestion either, but I think the MWFlorida was doing this under a doctor's care and was being monitored. I agree with Don that the dose of fentanyl wouldn't get one high and isn't likely to lead to relapse as I am pretty sure the dose is barely enough to keep withdrawal at bay. I don't know if you have ever been in a position to take a narcotic AFTER suboxone but they don't do much of anything and there is certainly no way you would get high. You would have to take such an astronomically high dose of something and may still not feel high. Could someone rip the patch off and start sucking on it or whatever? Yes. I think it can be risky, but I also think if you are being followed by a doctor and then are going to be given LDN after which helps prevent relapse if I understand it correctly then I think one is at no greater risk than they are simply stopping suboxone.

It is great to see and hear of people who quit suboxone with no WD symptoms at all and who feel wonderful. I have also seen/heard people jump at the same level and have horrible withdrawal and PAWS. Every person is different and there is a real issue with figuring out how to get people safely and comfortably off suboxone. Some people struggle with tapering over such a long time frame.

The bottom line so far as I am concerned is that it is dangerous to go off suboxone. PERIOD. It must be done with help of a doctor who you can be 100% honest with. The withdrawal isn't the part I am concerned about for anyone. It is the PAWS I am concerned about. Long term statistics for staying clean are terrible for all of us and we all need to be cautious about the choices we make both short and long term.

I am concerned when ANYONE on this site quits suboxone and we don't see them return. This is whether they tapered properly or participated in some new study.

I agree with Don that the fentanyl/LDN route isn't something I am certain will show to be statistically significant. I agree with Don that it isn't outrageously dangerous or any moreso than any other technique to get off suboxone because of the low dose. I also think that we must appreciate those who have been willing to become lab rats for the sake of the rest of us because we learn from it. of note, MWFlorida has before come and gone without comment and without relapse so I am not so concerned that we haven't seen or heard from her. Not any more than I would be anyone else who quit sub.

I hope to hear back from MWFlorida that she is doing well and feels ok. If it is the other way around then I will still appreciate that she tried. If it were me, I would not be recommending the technique to others prior to the study being completed.

Just my opinions.

Cherie

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PostPosted: Mon Oct 25, 2010 7:06 am 
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donh wrote:
This LDN stuff also seems to be very much in the experimental phase. I have read more about it and it seems to have been tried or is being tried for a huge variety of illness from HIV to cancer to Alzheimer’s to arthritis and on and on. The list is nearly endless. Snake oil comes to mind. The major problem is there are not many GOOD studies to show that it works – or that it doesn’t. It strikes me nearly like the infomercials on radio and TV trying to get you to buy this pill or that potion. LDN’s use for narcotic addiction is even newer.



I'm going to have to agree with Mr. Donh here. No offense at all to those who are in the study, the only way we can obtain knowledge about some things is to conduct studies. But I mentioned this to my doctor in an email recently, and I will quote you his response right here:

"as for Fentanyl being used to wean people off suboxone, I have one word for you: ridiculous"

He's a pretty opinionated guy, and he's been working with addicts for about 30 years, for 20 of those years he ran a methadone clinic. I think he's fairly knowledgeable in this area.


Now, let me relate a bit of my own personal experience with Fentanyl and suboxone. As many of the regulars here know, I am pretty ill with Hepatitis C. I require liver biopsy about once every 18 months to monitor the damage to my liver and my viral load is routinely sky high (in the 10's of millions). At my last biopsy, I had been taking 6mg of suboxone, which I stopped taking 72 hours prior to the procedure, on my surgeon's advice and the advice of my suboxone prescriber. Typically, a liver biopsy is collected by administering Fentanyl -enough to put the patient on the edge of consciousness- and then they use a large needle to go between two ribs and collect the sample. Knowing I was a suboxone patient, they had an anesthesiologist present for my procedure (they usually don't do this). The anesthesiologist gave me "enough fentanyl to knock down a rhino" and guess what? It did NOTHING to me. Nothing! Nada, zilch, it was a freaking water shot. I did not feel a thing. The intern, the anesthesiologist and the nurse who were present all looked at me as the drug was administered and I sarcastically/jokingly said, "um, when are you going to let me have the good shit, dude?" And the three of them just looked at each other, with a look on their faces that bordered on astonishment. The procedure was aborted and I ended up having to go back a few weeks later to have it done under general anesthesia.

So, frankly, all this talk of fentanyl "ripping suboxone off the receptors" sounds a little, well, silly, from where I sit. I was told by those doctors that they gave me approximately DOUBLE the dose they would normally give for that procedure, because of the suboxone - this is why they had the anesthesiologist there, in case something went awry with the drugs.....

This is just my experience. If this system worked for someone, well, that's great. And I'm happy for anyone who tried it and had success, but I do question some of the conclusions I'm reading here, based on my own direct experience.


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PostPosted: Fri Oct 29, 2010 4:32 pm 
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Cherie,

Just a quick note.. Do not worry about those that have quit suboxone and not returned.. I see it in myself. I am one month clean today and I noticed that once I got clean I tended to avoid this site for a while. Most of it was due to the overwhelming feeling of just life and learning how to enjoy it all over again with friends and family. When we are addicts we tend to isolate ourselves more so when we're clean we try to make up for lost time with the people that mean the most to us. Some of it might have been due to all the talk of it making me think about using. Some days I feel weaker than others so I do SOMETHING ELSE to take my mind off it. Today is the first time I've been back on in a few weeks and it's because I feel I owe this place something because of what you all have done for me. I figure if one person can read that I've been successful then I'm already giving back. Good luck to all.

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PostPosted: Sat Oct 30, 2010 1:03 pm 
I know this thread probably needs to die, but I have a few things to add, in the interest of balance.
Like donh.....I have lots of experience with Fentanyl. I used it myself....mainlined crazy amounts of the stuff for several months. I also administered it to patients. Being a labor and delivery nurse, Fentanyl was used as part of the 'mix' that anesthesia used for epidural administration, and it was also given IV as an analgesic for the pain of labor. That's right...50 to 100mcg IV push every one to two hours. The drug was deemed to be as safe as any other narcotic analgesic used in labor. And it worked....really well for most patients. It is a short acting drug and is cleared relatively quickly when given IV. As far as it having the potential for abuse.......Well of course it does, but no more or no less than any other 'flavor' of opiate. It certainly isn't the 'devil' of all drugs. In my opinion that title belongs to perhaps good ole hydrocodone, as that is what usually lights the fire that leads to us delving further and further into the abyss of stronger, more potent and dangerous drugs with the potential for abuse. Just my opinion.
Junkie.....as to your experience with Fentanyl. I believe you said that you were given about twice the 'normal' amount of Fentanyl for your procedure and it did nothing for you. Doesn't surprise me a bit! I can tell you from my own personal experience that that 'usual' dose was probably around 50mcg IV, 100mcg at the most. If they doubled that you still probably wouldn't get any relief. I know when I was using it.....I started with 50mcg IV and within a matter of just a few weeks (because of my high tolerance) I could mainline 200mcg and still be standing, walking, talking, etc. So with you having been on buprenorphine for all this time.....I suppose you'd require more like a triple or quadruple dose of Fent to work for you. Problem being....no one in the medical field is going to be comfortable administering that amount of drug. If nothing else they sure as hell don't want to have to document that! So to cover their own ass...they abort the procedure. That's how I see it anyway.
As to MW.....Seriously if anyone thinks that using a 50mcg patch of Fentanyl X 2 right after 10 months of Subutex is going to provide any sort of high.....you're mistaken. The patient isn't going to get a thing out that.....no high, no nothing! All it's going to accomplish is to keep the patient from experiencing the w/d symtoms of abruptly stopping Sub. As some of the others have said, I'm not so sure it's 'ripping' the Sub from the receptors.....I'm more inclined to think it's just easing the pain of the Sub leaving the receptors. But whatever. Point being it's just an attempt to avoid some of the suffering of w/d. I see no harm in it as long as the Fentanyl is not continued beyond the six days the study allows.
I think the real test is whether the LDN works for PAWS. The jury is still out I suppose as MW is still fairly early in the process. I can tell you this......She has not relapsed. She doesn't return here because she didn't appreciate the way she felt she was treated here. She came here with the intent of sharing here experiences and offering a possible alternative to others who are struggling with getting off Sub and was met with a fair amount of criticism and interrogation, which was not what she needed at the time.
Too bad that over the internet we lose so much of the personal interaction. All we can do is read and read into what is written without the benefit of seeing the poster's face, body language, etc to help us know what the poster really needs. Instead what seems to end up happening is that we leave the poster feeling attacked and foolish and confronted as if they were doing something wrong. When in fact, all they're trying to do is the same as the rest of us.......find their way through this, figure out a plan that will work for them, offer alternatives to others who may be in the same boat.


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PostPosted: Sat Oct 30, 2010 1:18 pm 
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Thanks Setmefree.

I for one was very interested in hearing how this turns out.


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PostPosted: Tue Nov 02, 2010 10:06 am 
For those interested in the outcome of MWFlorida's experiences.......MW and I speak with one another on a fairly regular basis. While she has no interest in coming back to the forum at this time, she has given me the 'go ahead' to update here for her.
She sounds great.....is busy running her practice and caring for her family.....has barely missed a beat since she began participating in this study. However, she did want me to mention that by no means has this been a "walk in the park!" She had a few pretty rough days after finishing the 6 days of Fentanyl patches.....symptoms very similar to w/d from any opiate.
She is still on the low-dose Naltrexone. The dose has been increased very slightly and gradually since she started it. She feels it is working quite well in combatting the PAWS symptoms which she was so concerned about with quitting bupe. She denies any cravings, says she's sleeping well and functioning well, and has "not even thought about relapsing."
So that's where it stands now. So far......so good. As far as I'm concerned.....I'm just thrilled to see another success story! I suppose the jury is always out when we choose to stop bupe (or even when we stay on it, if we're honest) as to whether sobriety will be eternal or not. It seems the LDN would provide a bit of insurance against relapse without paying the high price of permanent buprenorphine maintenance. But there again, there is NO certain answer when it comes to addiction!


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PostPosted: Tue Nov 02, 2010 10:42 am 
Thanks for the update. I was really interested in the study MW was participating in, and I felt badly when she left the forum. I am really grateful that there are doctors studying Suboxone withdrawal, and patients willing to participate. It think it's unconscienable for RB to market a drug that they fully acknowledge causes dependency, and then simply state that "no controlled studies" have been done on discontinuing the medication. Suboxone really is a breakthrough treatment for addiction remission. I just think it NEEDS a clinically developed protocol for withdrawal.

And MW, if you are still lurking, I never felt that you were even suggesting that others to get off of Sub using fentanyl and/or LDN. Your were participating in a clinical study, for God's sake, and sharing information. This is what this forum is all about, especially since there's so little good information out there. So I'm sorry people got so bent out of shape. I hope you're doing well.
Lilly


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PostPosted: Tue Nov 02, 2010 3:48 pm 
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"It think it's unconscienable for RB to market a drug that they fully acknowledge causes dependency, and then simply state that "no controlled studies" have been done on discontinuing the medication."

While I understand why this may be, I have to agree with Lilly that it really is disappointing that there are not many if any "good" studies that have looked at getting off of Bup. Certainly there are studies that have looked at how well patients do when they stop Bup (not too well, unfortunately) but I have yet to see very many studies that have looked at the actual protocol of stopping Bup. Even after, what, 8-plus years of Bup being on the market, we really don't have a "best practice" guideline or protocol for tapering off and stopping Bup. The best thing I've personally ever seen is the liquid taper method and that was sort of "made up" by patients. Out of necessity, patients came up with their own "best practice" because the medical community doesn't really have one.

Unfortunately, from what information we have been given, I don't see the "study" that is being done down in Florida that MW is a part of changing that. While, clearly, I have not seen the study protocol, it is really disappointing that this is not a double-blind, controlled study. The way most of these types of studies are done is you take two groups of people, one group is given the LDN and the other group is given a placebo (sugar pill). Neither knows what they are taking. They then compare the two groups. It is very important that the subjects not know if they are taking the study drug or placebo as this can and often does effect the results of the study. The fact that MW knows she is taking LDN makes it impossible that this is a blinded study. I even wonder if there is a "control group" that is being "studied" that is not taking LDN. If not, this really is not a controlled study at all, but more a trial and error by a doctor who is "studying" the use of LDN. It's certainly better than nothing, but controlled and double-blind is always much more accurate and much more preferred when looking at something like this. Otherwise how will we know if using LDN is better than not using it? If we don't "study" both groups, we don't know. We have to have something to compare to.

Certainly when it comes to MW herself, it's great to hear that regardless of the methods, she seems to be doing well. For her, it seems to be a "win" - at least so far. Hopefully it will stay that way. I just wished we could say that this method was better than not using LDN or not using Fentanyl or was better than liquid taper. I just don't think this study is built to show that. Which brings me back to where I started with Lilly’s comment that even after this "study", we will still have to say "that "no controlled studies" have been done on discontinuing the medication." Someday. Hopefully, someday.


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PostPosted: Fri Nov 12, 2010 11:01 am 
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For me, the best thing for PAWS was time. And exercise helped heaps.

While it's not really pertinent to this discussion, I've been on high dose naltrexone and didn't find it particularly helpful at alleviating cravings. The logical part of my brain therefore thinks well, if it didn't do much for me at a high dose, why would it be effective at a low dose? I did notice while on naltrexone treatment that I felt strangely dysphoric - much moreso than I would with PAWS without any pharmacotherapy. I was really cranky as well, much moreso than the periods I went clean with no meds.

MW's posts have been fascinating to read. However, this giddyness, happiness and energy that MW speaks of could just be the raw, emotional and alive feeling of finally being free of the cotton wool casing of opiate dependency. I always found PAWS wasn't necessarily a 24/7 flat, depressive, grey and lethargic living. Rather it was a volatile, raw cycling with confusing highs and gutting lows. Over time my mood progressively levelled out and the swings came less often.

As for the use of fentanyl patches to assist in subox withdrawal. The talk of "ripping it off the receptors" sounds like a crock. But regardless, the dose of fentanyl being delivered MW's patch over 3 days, being used as prescribed and not opened licked or injected, has much less of an opiate effect than the lower doses of subox many people jump off at the end of their taper. Why couldn't a weak fentanyl patch be used as a stepping stone? Sounds better than jumping off 6mg to completely bare receptors. Slowly progress to weaker patches. Start cutting them in half. Sounds like it could work in theory? I don't see any sane doctor prescribing it to someone like me though!

I think we should all just be on buprenorphine patches. I feel that whacking on a patch every coupla days reminds me a lot less of my addiction than messing with pills. But that's another thread entirely.


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Fond Du Lac Psychiatry
Dr. Jeffrey Junig, M.D., Ph.D.

  • Board Certified Psychiatrist
  • Asst Clinical Professor, Medical College of Wisconsin

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