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PostPosted: Fri Apr 16, 2010 12:23 am 
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I've been seriously ill for most of my adult life, first with what was originally diagnosed as Behcet's Disease (an autoimmune disorder that affects the blood vessels) and which resulted in a toxic megacolon and total colectomy (removal of my large intestine) over twenty years ago. For several years prior to the surgery I had been treated for the severe pain of inflammatory bowel disease and the diarrhea with codeine and tylenol. I became quite tolerant over time and eventually, after four years, was taking 30 mg of codeine every 3-4 hours, spending at least 2 of those hours in partial withdrawal and starting the process all over again. After my bowel surgery I was fed up with the routine and at my request was sent to a pain management clinic. They wanted to put me on a fairly sophisticated pain cocktail which they felt would work better. I wanted my autonomy back so I chucked it all and quit the codeine cold turkey. I wouldn't recommend it to anyone because I ended up in ER with a serum potassium level of 2.3 and serious heart arrhythmia. But, since I was so far along into withdrawal they gave me an I.V. and saw me through it.

For several years after that I successfully used meditation and biofeedback, along with vitamins and supplements to manage my symptoms, including any residual pain. I went back to school, got a couple of graduate degrees and enjoyed a great career as a hospice therapist.

About eight years ago however, I started getting quite ill again. I had a few surgeries (uterus, ovaries removed) and was started on several meds for things like hypertension, hypothyroidism etc...My meditation and supplements were no longer managing my pain, especially pain in my muscles and what seemed to be bone pain. The pelvic pain was helped somewhat, for a time, by the removal of the uterus and ovaries as I had extensive disease in these organs that was not managed with hormone supplementation.

Then I developed a parathyroid tumor and hyperparathyroidism, which helped to explain the muscle pain and the abdominal pain. I had the tumor removed and expected, at last, to return to my previous, hard-won good health. Not so. Instead my pain continued and became much worse. I couldn't sleep for several months or rest. We tried everything except narcotics and finally, beside myself with pain, I asked my doctor for something that would work and let me sleep.

He gave me oxycodone. That was six years ago. I took it for four years and of course ended up in a similar situation to what I endured with the codeine. In the meantime several different diagnoses were being pursued. The one which held the most water was a possible diagnosis of carcinoid disease with carcinoid syndrome (causes flushing, diarrhea, muscle cramps etc...) The diagnosis was supported by elevated levels of 5HIAA (metabolite of seratonin) in my urine, but we could find no tumors (they're tiny and avoid detection for quite a while sometimes). I had changed physicians and the one I have now had first pursued a career in pharmacy so he felt that I would do better pain-wise if I switched to fentanyl. For two years now I have been on a 100 mg patch, changed daily as he felt I was what he termed a 'fast metabolizer'. At one time, prior to the switch to fentanyl I had weaned myself down to just 5 mg of oxycodone per day, until I had a nasty pain flare which included nerve pain for four months and during that period I went back up to 30 mg every 4-6 hours. We also tried gabapentin and neurontin but they did not help at the time. Gradually the extreme nerve pain subsided (were neuroendocrine tumors producing other chemicals than seratonin was the question at the time), but the other pain I experienced kept me at the 30 mg oxy dose 4-5 times a day.

Initially after the switch to fentanyl, I did beautifully, almost became my old self. I had forgotten what life without serious pain was like and I left my fetal position in my bed for several hours a day. I am still doing reasonably well on the fentanyl dose but I found that this summer I started to experience some anxiety (not my usual pattern except when I was growing the parathyroid tumor) so my doctor prescribed Xanax--5 mg at bedtime PRN to help with leg cramps and anxiety and sleep since now I was having trouble sleeping again too. So far there is no evidence of a return of the parathyroid disease but I had symptoms for two years before the clinical diagnosis last time too.

Why am I raising this here? Because this last fall my doctor started suggesting that I check out suboxone on the web and consider trying it to help with my pain and also consider whether my tolerance to narcotics and my long-term use of them might be a contributing factor to my pain levels and lack of quality of life. He recommended that I take a small dose of suboxone at bedtime concurrently with my fentanyl and gradually reduce the time between patches and then the dosage level.

I scoured the web, including this forum and nowhere, nowhere, could I find anything to support concurrent use of fentanyl and suboxone. I went back to him and quizzed him on this and received a condescending reply along the lines of the doctor being the authority on the issue (did I know that you couldn't prescribe the stuff without going through a special course on line and did I remember he was first a pharmacist and then a physician and he had another patient that it had worked just fine with etc...) I was shamed into silence for a visit or two (I see him every month). Two months ago, after he had written a prescription for the suboxone (2mg/.5mg twice a day if necessary or once at bedtime), before I left his office I again raised my concerns that taking the fentanyl concurrently with the suboxone might result in PCW and shared my 'terror' over the idea, to which he said that he supposed if I worried about it long enough I could manage to have symptoms, but that he really believed I was going to be 'just fine'.

I went home, had a stern talk with myself and still couldn't bring myself to start the sub with the fentanyl so I stopped using the patch for 36 hours and when I started feeling withdrawal symptoms (anxiety, lots more pain, nausea, runny nose, weepy red eyes etc...) I took my first dose of suboxone. Within twenty minutes I had what you all describe as PCW. I couldn't reach my physician (he spends half his time in BC, the other in Alberta where I live) so I called my pharmacist who wrongly suggested that I use the Zanax I had on hand for the severe muscle twitching/restless legs and waves of cold tremors--I now know that's not a good idea, but I did take one dose and it did little to help--and he strongly recommended that I take no more suboxone and put my fentanyl patch back on until I could see my doctor. I did that. Saw the doc who seemed baffled that I'd had this nasty reaction.

We decided to wait for me to get my nerve back before I attempted another induction and he agreed that it might be ideal for me to be ready to come completely off of the fentanyl before using the suboxone. But I kept reading and I wanted so much to just be brave about the whole thing and I really do want to know if narcotic use is either part of my problem or most of my problem so, over the Easter vacation, when no one was home, believing after reading your site that my problem was that I simply wasn't far enough into withdrawal to have a good induction, I waited 48 hours and felt very ill indeed before using the suboxone. I had exactly the same reaction as before and again (though he said he'd be reachable and in town should I decide to try again) my doctor was unavailable. After discussion with the pharmacist we thought that perhaps, since I'd been on such a high dose of fentanyl I simply needed more suboxone so I took another dose and then an hour later, when the symptoms were severe enough that I was considering a trip to the ER but not sure I could trust whatever might happen there either, or make myself understood in light of the severity of my symptoms and having no one around to relate my recent history, I took yet another dose of suboxone. This simply exacerbated the PCW. I have five very, very bad days in my 57 years on the planet, three of them include toxic megacolon and a couple of bouts of septicemia, two are around the use of suboxone. I am very strong willed and not a wimp. I had six children without any analgesic of any sort and do not resort to using medication for pain unless the pain is unmanagable by other means. But this was really, really awful and very frightening besides. Frankly in the worst of it I simply wished I could die rather than go through another hour of the wretchedness. I gained tremendous compassion for those who have long struggled with addiction and dependency issues which is good, but I'd rather learn compassion some other way, thank-you very much.

My question is this, is there anyone who cannot use suboxone? Is there an issue with suboxone use and missing the large intestine? I know that it is primarily cleared through the liver, but what do I need to do to avoid this nasty experience because I really do not think I can go through it again?

It is possible that I have small 'grass seed' sized carcinoid tumors in my liver--possible though not likely since the scans show nothing so far. However, if, if I have a problem with seratonin metabolism due to carcinoid tumors using tryptophan to make seratonin would this affect the way the suboxone is being metabolized?


I did not just have a twenty minute bad experience but rather a very lengthy day of it each time and several days afterward of pain with very sore muscles (due to all the cramping and twitching) and bruises all over my legs and arms from the thrashing about in my bed and bathroom as I paid homage at the porcelain shrine. So, it cannot have been just from the naloxone which should have cleared through my system fairly rapidly and then the fentanyl would have worked again, so whatever is going on must be due to the buprenorphine (my take, but, hey, what do I know?).

Sorry this is such a lengthy post but I thought you should have as full a picture as possible and all of the context. I see my physician again on the 19th and I want to go in with as much information as possible so that I can diplomatically, but sincerely explore the best possible course for my well-being. Calgary, where I live, has a very high patient to physician ratio; it's difficult to find a new doctor, besides which I am reluctant to doctor shop when I am a narcotics user.

Appreciating all of you for this wonderful community of care,
Sheila


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PostPosted: Fri Apr 16, 2010 1:57 pm 
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sheilafaye wrote:
I've been seriously ill for most of my adult life, first with what was originally diagnosed as Behcet's Disease (an autoimmune disorder that affects the blood vessels) and which resulted in a toxic megacolon and total colectomy (removal of my large intestine) over twenty years ago. For several years prior to the surgery I had been treated for the severe pain of inflammatory bowel disease and the diarrhea with codeine and tylenol. I became quite tolerant over time and eventually, after four years, was taking 30 mg of codeine every 3-4 hours, spending at least 2 of those hours in partial withdrawal and starting the process all over again. After my bowel surgery I was fed up with the routine and at my request was sent to a pain management clinic. They wanted to put me on a fairly sophisticated pain cocktail which they felt would work better. I wanted my autonomy back so I chucked it all and quit the codeine cold turkey. I wouldn't recommend it to anyone because I ended up in ER with a serum potassium level of 2.3 and serious heart arrhythmia. But, since I was so far along into withdrawal they gave me an I.V. and saw me through it.

For several years after that I successfully used meditation and biofeedback, along with vitamins and supplements to manage my symptoms, including any residual pain. I went back to school, got a couple of graduate degrees and enjoyed a great career as a hospice therapist.

About eight years ago however, I started getting quite ill again. I had a few surgeries (uterus, ovaries removed) and was started on several meds for things like hypertension, hypothyroidism etc...My meditation and supplements were no longer managing my pain, especially pain in my muscles and what seemed to be bone pain. The pelvic pain was helped somewhat, for a time, by the removal of the uterus and ovaries as I had extensive disease in these organs that was not managed with hormone supplementation.

Then I developed a parathyroid tumor and hyperparathyroidism, which helped to explain the muscle pain and the abdominal pain. I had the tumor removed and expected, at last, to return to my previous, hard-won good health. Not so. Instead my pain continued and became much worse. I couldn't sleep for several months or rest. We tried everything except narcotics and finally, beside myself with pain, I asked my doctor for something that would work and let me sleep.

He gave me oxycodone. That was six years ago. I took it for four years and of course ended up in a similar situation to what I endured with the codeine. In the meantime several different diagnoses were being pursued. The one which held the most water was a possible diagnosis of carcinoid disease with carcinoid syndrome (causes flushing, diarrhea, muscle cramps etc...) The diagnosis was supported by elevated levels of 5HIAA (metabolite of seratonin) in my urine, but we could find no tumors (they're tiny and avoid detection for quite a while sometimes). I had changed physicians and the one I have now had first pursued a career in pharmacy so he felt that I would do better pain-wise if I switched to fentanyl. For two years now I have been on a 100 mg patch, changed daily as he felt I was what he termed a 'fast metabolizer'. At one time, prior to the switch to fentanyl I had weaned myself down to just 5 mg of oxycodone per day, until I had a nasty pain flare which included nerve pain for four months and during that period I went back up to 30 mg every 4-6 hours. We also tried gabapentin and neurontin but they did not help at the time. Gradually the extreme nerve pain subsided (were neuroendocrine tumors producing other chemicals than seratonin was the question at the time), but the other pain I experienced kept me at the 30 mg oxy dose 4-5 times a day.

Initially after the switch to fentanyl, I did beautifully, almost became my old self. I had forgotten what life without serious pain was like and I left my fetal position in my bed for several hours a day. I am still doing reasonably well on the fentanyl dose but I found that this summer I started to experience some anxiety (not my usual pattern except when I was growing the parathyroid tumor) so my doctor prescribed Xanax--5 mg at bedtime PRN to help with leg cramps and anxiety and sleep since now I was having trouble sleeping again too. So far there is no evidence of a return of the parathyroid disease but I had symptoms for two years before the clinical diagnosis last time too.

Why am I raising this here? Because this last fall my doctor started suggesting that I check out suboxone on the web and consider trying it to help with my pain and also consider whether my tolerance to narcotics and my long-term use of them might be a contributing factor to my pain levels and lack of quality of life. He recommended that I take a small dose of suboxone at bedtime concurrently with my fentanyl and gradually reduce the time between patches and then the dosage level.

I scoured the web, including this forum and nowhere, nowhere, could I find anything to support concurrent use of fentanyl and suboxone. I went back to him and quizzed him on this and received a condescending reply along the lines of the doctor being the authority on the issue (did I know that you couldn't prescribe the stuff without going through a special course on line and did I remember he was first a pharmacist and then a physician and he had another patient that it had worked just fine with etc...) I was shamed into silence for a visit or two (I see him every month). Two months ago, after he had written a prescription for the suboxone (2mg/.5mg twice a day if necessary or once at bedtime), before I left his office I again raised my concerns that taking the fentanyl concurrently with the suboxone might result in PCW and shared my 'terror' over the idea, to which he said that he supposed if I worried about it long enough I could manage to have symptoms, but that he really believed I was going to be 'just fine'.

I went home, had a stern talk with myself and still couldn't bring myself to start the sub with the fentanyl so I stopped using the patch for 36 hours and when I started feeling withdrawal symptoms (anxiety, lots more pain, nausea, runny nose, weepy red eyes etc...) I took my first dose of suboxone. Within twenty minutes I had what you all describe as PCW. I couldn't reach my physician (he spends half his time in BC, the other in Alberta where I live) so I called my pharmacist who wrongly suggested that I use the Zanax I had on hand for the severe muscle twitching/restless legs and waves of cold tremors--I now know that's not a good idea, but I did take one dose and it did little to help--and he strongly recommended that I take no more suboxone and put my fentanyl patch back on until I could see my doctor. I did that. Saw the doc who seemed baffled that I'd had this nasty reaction.

We decided to wait for me to get my nerve back before I attempted another induction and he agreed that it might be ideal for me to be ready to come completely off of the fentanyl before using the suboxone. But I kept reading and I wanted so much to just be brave about the whole thing and I really do want to know if narcotic use is either part of my problem or most of my problem so, over the Easter vacation, when no one was home, believing after reading your site that my problem was that I simply wasn't far enough into withdrawal to have a good induction, I waited 48 hours and felt very ill indeed before using the suboxone. I had exactly the same reaction as before and again (though he said he'd be reachable and in town should I decide to try again) my doctor was unavailable. After discussion with the pharmacist we thought that perhaps, since I'd been on such a high dose of fentanyl I simply needed more suboxone so I took another dose and then an hour later, when the symptoms were severe enough that I was considering a trip to the ER but not sure I could trust whatever might happen there either, or make myself understood in light of the severity of my symptoms and having no one around to relate my recent history, I took yet another dose of suboxone. This simply exacerbated the PCW. I have five very, very bad days in my 57 years on the planet, three of them include toxic megacolon and a couple of bouts of septicemia, two are around the use of suboxone. I am very strong willed and not a wimp. I had six children without any analgesic of any sort and do not resort to using medication for pain unless the pain is unmanagable by other means. But this was really, really awful and very frightening besides. Frankly in the worst of it I simply wished I could die rather than go through another hour of the wretchedness. I gained tremendous compassion for those who have long struggled with addiction and dependency issues which is good, but I'd rather learn compassion some other way, thank-you very much.

My question is this, is there anyone who cannot use suboxone? Is there an issue with suboxone use and missing the large intestine? I know that it is primarily cleared through the liver, but what do I need to do to avoid this nasty experience because I really do not think I can go through it again?

It is possible that I have small 'grass seed' sized carcinoid tumors in my liver--possible though not likely since the scans show nothing so far. However, if, if I have a problem with seratonin metabolism due to carcinoid tumors using tryptophan to make seratonin would this affect the way the suboxone is being metabolized?


I did not just have a twenty minute bad experience but rather a very lengthy day of it each time and several days afterward of pain with very sore muscles (due to all the cramping and twitching) and bruises all over my legs and arms from the thrashing about in my bed and bathroom as I paid homage at the porcelain shrine. So, it cannot have been just from the naloxone which should have cleared through my system fairly rapidly and then the fentanyl would have worked again, so whatever is going on must be due to the buprenorphine (my take, but, hey, what do I know?).

Sorry this is such a lengthy post but I thought you should have as full a picture as possible and all of the context. I see my physician again on the 19th and I want to go in with as much information as possible so that I can diplomatically, but sincerely explore the best possible course for my well-being. Calgary, where I live, has a very high patient to physician ratio; it's difficult to find a new doctor, besides which I am reluctant to doctor shop when I am a narcotics user.

Appreciating all of you for this wonderful community of care,
Sheila


Additional significant information: I forgot to include that one of my diagnoses is fybromyalgia and also I have been using 50 mg of dextromethorphan each day in order to offset becoming tolerant to the fentanyl. Since writing this post I did find some information in this forum about the difficulty of induction when fentanyl has been the drug you're transitioning from. Oxycodone has been my breakthrough drug (though I do not use it as I don't find it helpful and don't like the 'side effects' the few times I have tried it since I switched to fentanyl) so I do have some on hand that I suppose I could substitute for the fentanyl (as suggested to try for a week prior to induction to suboxone) but I now have quite a few questions as to whether this is my best course of action--if Fentanyl users don't feel better using Suboxone, what would be the purpose of my going on it? Wouldn't I be better off to just wean slowly off the fentanyl and forget about the suboxone? I really want to get some clarity around whether the narcotics are helping or hurting and I don't like being dependent on anything outside of myself, but I hate being in pain all the time too, so please, someone advise me here.

Sheila


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PostPosted: Fri Apr 16, 2010 10:58 pm 
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Hi Sheila,

First of all I would like to welcome you to the forum. You are the first other Canadian that I have discovered since I have been on suboxone. I live in Ontario, about two hours east of Toronto.

I am really sorry to hear that you are having so much trouble trying to induct on sub. I also had a lot of difficulty inducting but I believe it was due to lack of knowledge. My story is in the introductions so I won't bore you with all of the same details, but to sum it up, my doctor knew very little about sub so I was pretty much on my own there. I did all of my own research which is okay, but did get quite a bit of conflicting advice at first. I was also taking oxycontin, which is a 12 hour time release med, and I was on high doses of it. I think that inducting on to sub is far easier if you are on a short acting drug.

You have been through so much in your life. I cannot answer your medical questions concerning sub. I am not sure what the implications may be because of you are missing your large intestine. I do know that my brother in law has crohns and is also missing his large intestine, and does have issues with absorbing medications due to that. Saying that, I don't think sub would act any differently than other pain medications.

I do know that fentanyl is one of the most difficult drugs to induct from. I know several people on a different forum that also had problems doing that and it ended the same as yours, in precipitated withdrawal. They waited even longer than you did, about 72 hours I believe. I think if and when you try again, you should switch to oxycodone for about a week to ensure the fentanyl is completely out of your system. I think you will do much better with your induction if you switch meds.

Again, I am sorry to hear you had so many problems. Having been thru precipitated withdrawals myself several times, I know the agony you endured. I also want you to know that I also still have pain issues and that sub manages it very well, although not everyone has good results. Once you get inducted properly, and stabilized you can then address how to make most of the sub when using it for pain.

I do hope that you have better results the nest time. Let us know when you try again and there will be many people here that will stick with you during your induction, should you have any questions or experience any difficulties.

Hang in there, it will get better. Now that I am stable on sub, I am so much happier. I finally have my life back.

All the best,
Ginger


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PostPosted: Sat Apr 17, 2010 9:00 am 
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Shiela,

This is the 2nd time I have read this post and I am glad someone responded because your situation is complicated and I just didn't have any answers for you. But I didn't want you to feel ignored either so I am posting. I do hope something works out for you. I am glad you could find some information on the Fentanyl. I know nothing about this drug, but it sounds difficult kind of like methadone is difficult. You may want to read some of the advice people have about inducting from methadone to suboxone as the information could cross over. I am sorry you have had such a hard time and am very hopeful for you that at some point it will work out.

Suboxone has been very helpful for my pain as well. Not as good as the oxycontin, but life is still livable most of the time and I am happy with that.

Cherie


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PostPosted: Sat Apr 17, 2010 11:04 am 
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Hi Sheila -

WOW! I thought my wife had a rash of diseases. Amazing.

I have read every word, and must admit - I am VERY nervous to reply as your case is extreme.

Here is a question for you from what you said about your goal of determining if opiates are making the pain worse.

Do you think moving to a 'partial agonist opiate' will tell you what you want to know?

The reason I ask, is that your goal is a bit unique with buprenorphine. Most of us move away from the opiates due to the dependency and the tolerance (among all the lies, deceit, family damage, etc.) That is not you.

Some here have chronic pain, and wanted to be free of full agonist opiates - and found out that they could live with suboxone for the pain control (as well as other changes and non-narcotic meds). I'm not clear that this is your goal.

IF (and I mean IF) - your doctor thinks that absorption of the buprenorphine under the tongue will not interact with your various conditions - and IF you want to get away from tolerance and see if bupe will be enough for your pain, THEN....

I would do something siimilar - as you suggested. Since the fentanyl patch gets stored in your fat - it appears that it can linger under the skin for a long time (even with seemingly little effect). That is, until you replace the drug with bupe. Then, as you can testify, precipitated withdrawal happens.

Again, if you were to switch to a regular 4 hour type opiate (no long release) - I'd go a week or 10 days on that drug with ZERO fentanyl patch. If you are miserable on that routine - given your story - I would be skeptical if using suboxone would be very effective. Maybe. If you are 'OK' on standard 4 hour Half Life Opiates - and still want to see.... If I were you, I'd pick a time that made sense (doctor availability) - and then do a full 24 hour wait from your 4 hour half life opiate.

You will be in mild/moderate withdrawal by then. We say wait 24 hours for a COWS score that is high enough - some don't wait that long.

Then I'd be methodical about how you took the suboxone. I'd suggest that you either have 16mg available or 24 mg available. I'd start with one 8mg under your tongue - never swallow. Hold the saliva in your mouth - rub the strong mixture all over the walls of your mouth - for about 45 minutes. Then I'd not swallow it - just spit it out and wait for 15 minutes before drinking. You probably will find the most relief by dosing again in 6-8 hours (identically as above) - then again before bed. 3x a day for a bit.

Remember - suboxone has a long half life (36 hours average) - and it takes a while to come up to full strength - just as it takes a long time to be eliminated. The rule of thumb is 5 half lives. So, you should continue to feel better as the days go by on suboxone (but initially you should certainly notice the withdrawal symptoms subside).

Again, all of my suggestion above is only my OPINION- I am not a DOCTOR... I also have concerns that your goal may not be met this way. You look to be in big pain for life. Suboxone/Buprenorpine may work well enough - I don't know. At the receptor - it is substantially more aggressive than any of the standard opiates - so indeed to try this - you will have little fallback.

Lastly, I am now off of Xanax, but (even though this is controversial) - you are already tolerant to xanax, and opiates - so you might want to ask your doctor if you were to take your xanax before your induction if that might help your anxiety? Just a thought. The rule of thumb is that Xanax and opiates (or buprenorphine) is not suggested - but with a patient already tolerant - there is likely little additional risk - check with your doc on that idea.

Anyway - I hope if you decide to go for it - you let us know so we can try and be supportive. From a pain perspective only - buprenorphine is still an opiate receptor block. For a dependency issue - it's long half life, and the way it works helps us.

Good Luck! --LD


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PostPosted: Sat Apr 17, 2010 11:23 am 
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Hello and welcome to the forum. I have read your post a couple of times and wish I could help you however I don't have a lot of answers for your situation. I did find a thread from someone that had some bad experiences with fentanyl patches and going on suboxone and may help you. If anything you could contact him and ask more questions. Hopefully the doc will see your post and talk about the missing intestine and all that stuff. Hope this helps you. I couldn't figure out how to post the link but it is under Introductions by boxingofficial -Help me im scared and will be starting suboxone soon.

Good luck I hope you find some relief.

Jim


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PostPosted: Sat Apr 17, 2010 2:25 pm 
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Hi sheilafaye,

I understand in theory why your doctor would recommend that you take Suboxone and fentanyl at the same time. When I was on Suboxone, I had to pass a kidney stone which necessitated that I go back on full-agonist opiates for about a week. During that time I found that the oxycodone by itself couldn't even keep me out of withdrawal, when I added a small (1-2mg) dose of Suboxone to the oxycodone I was able to get adequate pain relief and no withdrawal.

Theoretically, if your opiate tolerance is high enough, a small dose of buperenorphine would not be enough to cause precipitated withdrawal when taken with your regular dose of full-agonist opiate medication. I'm thinking that your doctor's idea is that with some buprenorphine on board, you could begin reducing your fentanyl dose more easily or with less withdrawal symptoms. I know you said that you were unable to find anything to support this theory online; the only support I have seen for it is anecdotal reports from people like me or people who use a low dose of Suboxone to maintain stability/stay out of withdrawal while they are still abusing opiates, ie, a person who takes a daily dose of Suboxone but still shoots heroin several times a week. Not exactly the support you're looking for, I assume.

From reading your post, I gather that you haven't tried taking the Suboxone while you're still on the fentanyl patch, and after your experience with PW I can understand why you would be terrified to do so. I have read that people have a hard time switching from the fentanyl patch to Suboxone and I'm thinking that while you stayed off the fent long enough to go into w/d, there was still too much in your system to start a Suboxone induction. Conversely, you would need more fent in your system when starting the Sub for your doctor's theory to work.

If you do decide to give your doctor's advice (to stay on the patch AND take the Sub) my advice to you would be to take the tiniest dose possible at first. Like .5mgs or even less. Start small, you can always take more. If you decide you want to just switch over to Suboxone, I think the idea of switching over to a different full-agonist first is sound advice. I'd also say that if your goal is to find out if you are having hyperalgesia from the fentanyl, maybe just weaning down could help you determine that, if you are able to do so.

I'm sorry you are stuck in such a trying situation, and I hope you and your doctor are able to come up with a plan that works for you. I have to add that I'm not a doctor or anything, just a person who was on Sub for 2 years and has been off of it for about 8 months now. Lastly, I would encourage you to email Dr. Junig (the site admin) for advice, and hopefully he will try to help you. Good luck and take care.

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You can't stop the waves, but you can learn to surf.

-Jack Kornfield


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PostPosted: Sat Apr 17, 2010 2:33 pm 
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Wow guys, I only just logged on and read your replies. They're wonderful. I know I'm complicated so I do understand the reluctance to reply and feeling like you're not sure how to help. But you have helped, believe me.

[A little aside here because I think it's so important that you all realize what a marvelous community you have here--one of the most profound, most important things we do for one another is simply to 'bear witness' to each others' suffering --in fact to all of our life experiences but most especially to our suffering. That to me is what 'being human' is all about, that connection to each other and the compassion that arises from it. And you all are superb at demonstrating it...IMHO]

After about 80 hours of research here's where I'm now at: I believe that I have developed not only a tolerance/dependence for opioids but I'm pretty sure I'm also experiencing some opioid-induced hyperalgesia (it's a paradoxical response by the body which INCREASES the pain that you're actually trying to treat). And, from what I've read (the doc can likely speak better to this than I will) the best treatment for that is to cycle opioids, gradually decreasing dosage and type of opiod--for e.g. fentanyl to oxycodone to possibly tramadol (a very selective opioid that only binds to the mu receptor--the same one targeted by naloxone and one of the ones targeted by buprenorphine. I also learned, Cherie, that fibromyalgia sufferers are thought to have some problems with the mu receptor--I don't know whether those problems would make us more likely to be helped by suboxone or less likely, but I find it interesting in light of the fact that you find it helpful. Tramadol is supposed to be one of the few drugs that help some fibromyalgia patients as well.

What I'm going to do for now, at least until I hear from the doc here, is propose to my GP that I wean off of the fentanyl as quickly as possible (probably with the aid of clonidine for the anxiety) and when I'm down to 50 mcg, switch to the oxycodone for a week (as suggested here) and then try the sub again. What I'm not sure of is whether to try the suboxone or the subutex. I'm really not into this for the high it gives me since I've never felt it (sort of wish I did, but the only drug that ever gave me a nice feeling after taking it was Propolof which I was given a couple of years ago in ER so they could pop back in a badly dislocated knee. I'd dislocated knees several times in my life and usually just had them popped back in without any analgesia, but since I developed this pain disorder my body just responds nastily to everything.

I need to try something to change how I'm experiencing my life right now because my quality of life is too poor; I MUST act to try and feel better. The opioids don't seem to be very effective at all and in fact, when I tried oxycodone recently for breakthrough pain I felt worse and since I did the two botched inductions, when I tried to go back on the prior 100 mcg patch I felt terrible, so I'm presently trying to just 'hang in here' on 75 mcg, changed every 48 hours, plus tylenol and Xanax at bedtime. I have used amino acid supplements extensively over the years and I now notice that the Phenylalanine that I used to enjoy with a cup of coffee in the a.m. is too stimulating (I expect that's due to the withdrawal and hyperstimulation of the norepenephrine pathway). But I've also experienced some unpleasant feelings from GABA supplementation (a chemical in the brain that usually makes us feel relaxed and is also targeted for those who have epilepsy to prevent seizures). I'm getting a very unpleasant tingling (like the gooseflesh that accompanies withdrawal, sort of, but also similar to when our limbs wake up from numbness) so I'm worried that many things may be awry and I'm really pretty scared and awfully glad that I have a lifetime of training in meditation and breathing, but it's not quite enough to get me where I need to be right now in going through this.

So, right now, unless I hear differently from the doc on this forum, I'm going to try weaning down from the fentanyl with clonidine's assistance (it's safer than the Xanax, but I guess I have to wean off of that as well?) and then I will switch to oxycodone for a week and try the sub again. You know on the COWS scale I was all the way into moderate withdrawal last time symptom-wise, so that is not a reliable enough indicator for being rid of enough fentanyl. I think it's only indicating that sites are open and I feel really nasty, but maybe I should have just kept going since I was so far in. That's what I don't know, and I don't know if folks ever get to feel better who transition from fentanyl. If they don't, should I use the sub or try switching to tramadol?

I'd try a referral to a pain management service but the ones here don't enjoy a good rep among the GP's for some reason and I know when I took my pain management training in Hospice (from one of the best pain experts in the U.S. who advises all the top hospices) he did not have a very good opinion of most pain management clinics generally speaking.

So, I guess I'm saying I hope your good doctor decides to peek in here and chime in because I really think I do need some more substantial advice (though what you've all given me is as good as it can be with what you know and I deeply appreciate it).

More to come, I'm sure. I will keep you informed because who knows, someone else like me might come along. I did read, with interest, the case of the man with long term Crohn's who they inducted in hospital and said he also had PCW. I wonder if he's missing his large intestine? And if they have since managed a successful induction or what is happening with him?

And Cherie, though you have fibromyalgia, apparently there are subtypes of fibro patients and of course that's not my only pain issue either (nor yours, I understand), but I'm also wondering whether folks with pain disorders can be successfully inducted or whether this is mainly an aid for those who have a less complicated, though very painful dependence/addiction to opoids? Do you guys have an opinion on those issues?

I clicked through to a link one of you posted to another website where a fellow named Tim was suggesting that suboxone is likely NOT the way to go for people with underlying serious pain issues. But unless we're dying, I don't see how opioids can be used long term. I tried to offset becoming tolerant by concurrently using dextromethorphan, but my pharmacy has to compound it and it was expensive and I live on a small disability stipend and could not afford it, so I left it out of my regimen and I think that is one of the things that tipped the scale (dextromethorphan use was one of the 'tricks' I learned from the pain specialist who trained us at hospice---though only a counselor I did the week-long training because I love to learn---knowledge is my DOC---you'll think I'm kidding, but I'm not. I am addicted to knowledge because I believe knowledge gives me more control of my situation, but it's often not the case. It's important for me to recognize when I'm being driven by fear (if only I know 'enough' then I can figure out how to stop/avoid the pain) and my efforts to know more are getting in the way of my 'doing' something about my situation. Which could be happening now, I guess.

There may just be no way of being able to predict what another induction would be like and I may just have to try it, with the modifiers we've discussed. I don't think the fentanyl is working any more...

Have I said clearly enough that I think you guys are great and even though I'm not better yet, I'm really glad I landed here?

Sheila


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PostPosted: Sat Apr 17, 2010 2:47 pm 
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Hi Sheila,
You've gotten a lot of great responses and support. I wanted to respond about suboxone and pain control. I have two conditions (fibro being one of them) and got addicted through misuse of my pain meds. I believe I was one of those people who's pain got worse the more opiates I took. Suboxone doesn't erase my pain entirely, but it's doing one hell of a job at it. I'm currently doing a temporary taper-down in anticipation of surgery on Monday. This served to illustrate exactly how much the suboxone is working. I had no idea that underneath the subs my pain was so bad. I also had no problem being inducted. Of course yours is a much more complicated case, but I have read on other forums of fibro patients having success with suboxone as well. Maybe it can at least help that condition?

Let us know how you're doing.

_________________
-As I have grown older, I've learned that pleasing everyone is impossible, but pissing everyone off is a piece of cake.

-I'm only responsible for what I say, not for what you understand.


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PostPosted: Mon Apr 19, 2010 7:54 am 
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Shiela,

Just for clarification purposes, I don't have fibromyalgia. Thank God because I understand it sucks! I have other conditions that are not treatable and not curable.

I am really glad more people responded to you with more information and that you were able to find information on your own. It really sounds like are are developing a plan that may work for you. Very smart. I am very happy that you are here and that you find support in this online community. I agree that having people bear witness is important and for many of us, this is the only place we can really go where people know what we are talking about.

Cherie


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PostPosted: Mon Apr 19, 2010 12:21 pm 
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Cherie,

Thanks for the clarification about the fibro--I had figured out that I got you mixed up with DQ (that's Diary of a Quitter, not the Dairy Queen) but I am generally still confused about who's who here on the forum. It'll take a while, especially while I'm still under the influence of the fentanyl.

I did email Doc Junig and Saturday he wrote back briefly and promised to read my posts to the forum and figure out a response. I trust he's trying to fit that into a very full life and look forward to his expertise.

I too, am very happy to be here. It's a good place, and it feels like you all have done a great job of making it a relatively safe environment for folks just to be real, to be where they are and to explore where they might go with all of this. Safe learning environments are not easy to come by, especially when you're dealing with so many misconceptions about these issues.

The warmth and compassion feel pretty great too.

There's nothing quite like hanging out with people who know they're human and what that means, both in terms of being vulnerable and of taking responsibility for self in order to become all that we're capable of...it's kinda awe-full, really.

I'm trusting that once I have my plan clearly in place, I will bring it here and get the support I need to go through with it and to be accountable for seeing it all the way through.

Looking forward to the other side, whatever that might be,
and appreciating you,
Sheila


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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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