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PostPosted: Mon Feb 17, 2014 10:48 pm 
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Hello people!
I am wondering if anyone out there has had experience of, or word of, (anything really) of any side effects (physical especially) of long term use of suboxone. Or if anyone's had any similar health issues start to arise as I have?

I have always had a feeling/intuition that this medication is not good to be on for a super long time, or wondered if it being newer there would be any long-term use side effects. But I was scared to get off of it, so I just kept going until I finally found an awesome doctor that helped push me to go for it (as long as I felt I could do it).
I was on suboxone for a little over 5 years, as prescribed and only taking antidepressants, anti-anxiety meds (non-narcotic, buspirone for a long time), and mood stabilizers. Drinking alcohol (not much really) (maybe 1-2 times a month, maybe). I was slowwwwwly tapering down (started at 16 mg? or 8? i can't even remember now...) but around the 4.5 year mark of daily suboxone started to have some real weird health stuff happen. I am wondering if anyone else after years of use has had any health issues arise.

I am a 27 year old female, decent shape.
I thought I had a brain tumor for months (yay for no health insurance and low-income!), lucky for me I don't have a fatal condition from what we know thus far. My symptoms included/include: Extreme lightheadedness, blurry vision, tremors (waking up in the night feeling like someone is shaking my head), fast heart rate, pretty much feeling like i was about to pass out or have a seizure at anytime, etc...Finally borrowed a crap ton of money and got diagnosed with dysautonomia/Neurocardiogenic Syncope/POTS. I am now having some more fun symptoms of my legs going numb, hands cramping up, and what I like to call newborn baby horse legs (that's what i feel like I am walking with at times).
I have now completely been off suboxone since Oct 31st 2013, and symptoms still persist, although I have noticed slight improvement since discontinuing suboxone. (imagine, a big thing to avoid for the condition is OPIATES! So I assume continued suboxone use would have really been terrible.)

Now I am not at ALL saying I have PROOF that this is from suboxone, at all. I just am wondering if anyone else who has been on suboxone long term has had any health conditions, (similar especially) arise. I SUSPECT, that it maybe could have contributed to what I am going through now, and I guess am kind of looking for answers or other people experience of long-term use. Because if many other people have, I'd like to really try and help encourage others to not stay on suboxone long term.
But hey, it's a good chance I maybe just got the short stick in the health race.
Just curious....

Much love! Hope all is well in your world...
-Lucy


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PostPosted: Tue Feb 18, 2014 12:30 am 
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I erased one of your posts; please post only onoe thread for a topic, so that people can follow one discussion.

One thing that people who frequent this forum notice--- or should notice--- is that buprenorphine is blamed for any condition that doesn't have a good explanation. Dysautonomia-- dysfunction of the autonomic nervous system---- has been around much, much longer than Suboxone. Of course, buprenorphine has been around a long time too--- over 30 years and counting--- but when I do a literature search (as I just did), I see no association between buprenorphine and dysautonomia.

I hope you find answers-- but I think you are barking up the wrong tree. Buprenorphine is one of the safer medications out there. Recently I looked up the incidence of liver disease, since people love to say that 'buprenorphine is hard on the liver.' Acco rding to the NIH, there are no cases--- zero-- of elevated liver enzymes from clinical use of Suboxone, let alone liver damage. There are several cases of elevated liver enzymes linked to buprenorphine, but only after IV use of buprenorphine, and only by people who have hepatitis C. Yet people think that this drug MUST do something bad to people.

I get the phenomenon with doctors; docs always tend to blame a med that they have never heard of, when faced with symptoms they don't understand. As a psychiatrist I see this all the time, where a patient will have a fever, rash, bleeding, blood clot, hair loss, hair growth, limb pain, limb numbness, seizure, dizziness, nausea, etc..... and the ER doc will blame it on whichever med the patient is taking that the doc has never heard of. 'Must be the buprenorphine'. or 'must be the venlafaxine'. Never the drug that the doctor usually prescribes-- even when one of the more common drugs IS associated with the condition.

With laypeople, I suspect that it has something to do with the stigma of addiction; the sense that it isn't somehow 'right' for a medication to actually work, when so many other things have failed to work over the years. Who knows?

I hope you find the answer, Lucy. You mention you took a mood stabilizer, antidepressants, and anti-anxiety meds; I'm not sure why you don't assume one of THOSE meds caused the problem, since all of those classes of meds are newer than buprenorphine-- which came on the scene in the 1980s. Mood stabilizers in particular are nasty meds--- whether you are talking about lithium, the anticonvulsants, or the atypical antipsychotics (the three classes of mood stabilizers in use these days).

I doubt they are to blame either though. As I mentioned tilt-table tests and dysautonomia have been around much longer than any of these things, including buprenorphine. Some cases can be linked to problems with the small diameter nerve fibers that make up the autonomic nervous system, and some cases linked to spinal cord disorders--- but most cases are idiopathic, i.e. the cause is not known. That sounds strange.... until you realize that most human illnesses are the same, and happen for reasons that are not understood-- not at this point, anyway.

Opioids aggravate dysautonomia, yes-- but so do many, many other meds-- including mood stabilizers. Anything with the potential to slow the heart or dilate blood vessels will aggravate autonomic nerve disorders-- not because they 'cause' the disorder, but because they impact things that the autonomic nervous system controls--- and that is the problem, with dysautonomia.

One last thought about the benefit of encouraging others to stop buprenorphine... we do know of a very clear association between stopping buprenorphine, and death by overdose. I'm not joking-- I'm serious. Dead serious. It is so common that in my one, little practice, I've seen 6 deaths in people who discontinued Suboxone. In my 30 years as a doctor, including anesthetizing thousands of people, I haven't come across anything so deadly as stopping Suboxone.


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PostPosted: Thu Feb 20, 2014 10:30 pm 
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Thanks for your reply!
Yeah, I don't want anyone to think I'm saying hey suboxone caused my health problems... I just have had a few people tell me that it's not a good medication to be on for a long time, and wondered if anyone had experienced health problems after long term use. Or if these thoughts from others were coming from valid sources, experiences, or studies. From what I've tried to research (and by that I mean google-ing) I have not found many answers on long term effects, just a lot of people asking and not many answers.
Not that it would change my current situation anyways...but it was good to hear the other day from my neurologist that she has not had noticed a correlation between long term suboxone patients and neurological issues (so yay everyone!) She also said she never knew any patients that actually were able to stop suboxone (she's not very encouraging...), and I told her she's looking at one! :)

I just sometimes wonder if I had let myself stay on it longer than I may have needed to because it was a nice security blanket to me, and if that decision may had led me to where I am now. But when you're dealing with an addiction that can kill you, I guess it's worth it. I would not encourage anyone to get off suboxone unless they were ready.Or if it did seem to add up that it caused health issues, I would at the least just ask they keep that in mind. I know suboxone saved my life, I don't even want to know where I would be now if it were not for it's help. I would find no benefit on encouraging anyone to stop anything that would lead to their harm or death. But if it were to possibly lead to P.O.T.S., I would ask them to keep that in mind because damn this sucks! (Which this doesn't seem to be the case anyways)

I defiantly do take into consideration that the antidepressants, mood stabilizers, etc. that I have been on for years could have done damage to my body. I hear lithium can be pretty toxic and I was on a good run of that. But yeah, I have not had many doctors encourage me to get off the lithium when I was on it....Ah well, it is what it is.

Glad to hear that so far no one has had experiences, studies, or research that shows suboxone to lead to health problems.


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PostPosted: Fri Feb 21, 2014 11:16 pm 
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Hey, sorry to hear you're having issues. What I'm saying is pretty typical but I just wanted to let you know that I've been on suboxone about 2 years now and I've never even had any of the other milder or manageable symptoms others on this forum talk about, except maybe for dry mouth and muscle twitches only sometimes when I'm about to fall asleep in front of the TV (but not nightmares associated with), and the admittedly few sub patients I've encountered in real life never reported any real problems because of sub. I mean I'm not saying long term effects aren't possible but with the information from unbiased sources out there it doesn't seem too likely that potential effects would be anything too ugly.

Just to add on what dr j said about liver damage, it baffles me how many people don't realize that taking Tylenol long term is more likely to cause liver damage than buprenorphine. When I was 19 I got busted for underage drinking on a camping trip with friends and they made us attend the alcohol/substance education class, I had to correct one of the teachers from giving the wrong impression. He begrudgingly agreed.


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PostPosted: Wed Mar 12, 2014 7:05 pm 
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Hi, I have been on suboxone since 2006 and I am having neurological problems that I believe is caused by suboxone and I say that because the more I lower my dose the more feelings and strength come back to my feet and legs. I've had thousands of dollars worth of test of all kinds and they show nothing. I've taken all kinds of meds and nothing. I am walking on a cane, I fall all the time. I am now down to 2mg and can tell a slight difference. I am hoping I get at least 80 percent of my mobility back. But before you think I am a bitter hypochondriac let me say SUBOXONE gave me back my life. I may be walking with a cane but I am walking with my children and my only granddaughter and I have a fairly good life. So hooray for suboxone.


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PostPosted: Tue Apr 15, 2014 5:27 pm 
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rose53 wrote:
Hi, I have been on suboxone since 2006 and I am having neurological problems that I believe is caused by suboxone and I say that because the more I lower my dose the more feelings and strength come back to my feet and legs. I've had thousands of dollars worth of test of all kinds and they show nothing. I've taken all kinds of meds and nothing. I am walking on a cane, I fall all the time. I am now down to 2mg and can tell a slight difference. I am hoping I get at least 80 percent of my mobility back. But before you think I am a bitter hypochondriac let me say SUBOXONE gave me back my life. I may be walking with a cane but I am walking with my children and my only granddaughter and I have a fairly good life. So hooray for suboxone.


Rose,
I am by all means NO doctor, but maybe it's something that is aggravated by suboxone or opiates? That's what I'd think if symptoms decrease as you decrease off of it? Maybe we have the same thing! My legs have been increasingly weak, I am 27 and WISH I had a cane to walk with sometimes! I did notice symptoms get a little better after stopping subs but over the past few weeks my legs have gotten worse. So really, it's hard to tell if that had anything to do with it. although i DO know I have had more energy, I used to be able to sleep ALL the time anytime when on subs.
I am sorry to hear you are going through much testing and meds and not having much results (or none). I am in the same boat. It's very frustrating, and taking a real long time. Just be patient as can be and hold on to those little good things and keep toughing through! I send lots of love in hopes that you find answers soon!
<3 Lucy


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