Suboxone for RLS (wonderful medication for mine)

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rlsgirl
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Suboxone for RLS (wonderful medication for mine)

Post by rlsgirl »

Has anyone on here heard of Suboxone helping anyone with RLS? i have recently gone to a dr. for help with a opiote addiction from being on them for so long for my RLS. I became very ill from them lost alot of weight from not eating and being in a constant withdrawal when not taking them around the clock. since being on the suboxone i have has no signs of RLS what so ever. infact I have slept better in the past month than I have slept for the past 3 years. i'm just wondering if anyone else has experienced this or if anyone on here has ever been on this medication and had it help them with their RLS. This medication has helped me to take control of my life again in many many areas. I'm now almost at the point that I do not need to take it anymore and am on a very low dose of only 1/2 mg a day but still the medication keeps me from having RLS at all. Its been very strange but wonderful at the same time. i have started to speak to the dr. about the possability of keeping me on this small dose for my RLS since the RLS is what caused my addiction in the first place. I was taking so much medication to keep it under control and really nothing was keeping it under control; just keeping it from being really really bad. i would like to hear about anyone elses experiences with this medication if anyone on here has taken it at any time. Thanks so much.

cornelia

Post by cornelia »

Well, that souds wonderful rlsgirl! It makes me wonder if this could be a med for more people on this board, who are on opiates and don't want to up their dose. I wonder if this will work as a drug holiday for Oxy or methadone or another opiate? Anyone on that?

Corrie

Neco
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Post by Neco »

If you're dealing with an addiction specialist I'm not really sure how they could kick you off the stuff if its helping and you voice no desire to taper off. At least not with a good reason, like a relapse in abuse, etc.

Suboxone is something I have thought about considering for my RLS as well, as it is an alternative drug to methadone for maintaining addicts, and many seem to like it a lot better. I'm pretty OK with methadone right now, but I do want to look into it incase I am ever cut off from my doctor. I think they offer it at my county services dept, where I get counseling so I guess I'll find out one day.


In terms of RLS treatment..
I'm not really sure this drug is an appropriate temporary method for substitution of other opiates either. First and foremost if you are taking any other opiate you cannot immediately start suboxone unless you beging to go through withdrawal, that includes any nausea, pain, sweating, etc you may go through based on what you're taking and how big the dose is. If you tried to administer the drug too early it would immediately compete for, and knock your medication off your receptors sending you into full-withdrawal very rapidly, and it will be very very uncomfortable, especially when the RLS comes back at the more severe temporary level.

Like methadone, you should either be on suboxone for the long haul, or not be on it at all. In addition to this I suspect it would serve to do nothing for drug-holidays because these drugs also skyrocket your opiate tolerance across the board. This is only really going to be an issue for RLS patients, since when you switch back it is assumed you won't be able to physically stand being tapered down to below your normal comfort level dosage for a long period of time. Anyone who is taking methadone or suboxone one day, then the next switches back to their old meds, will likely find their tolerance was not as diminished as planned; if not worse than it was before.

I can speak from experience in saying this, because I tested it out with 10 -15 Vicodin a few months ago, pretty much the entire prescription - and it barely put a dent in me, almost didn't even feel the stuff. But that's just these medicines doing their job. And in that regard I am pleased at the result.

Anyone who wants to try drug holidays, would do better to identify a benzo they can take for a week or so, or try Ultram. Substituing one opiate for another is very hit and miss even in the best of circumstances, unless a doctor has enough experience to know a certain combination can be rotated successfully.

cornelia

Post by cornelia »

Thanks Zach, you have given an excellent explanation, I don't need to ask my neuro now. Moreover, if it would have been an option, many people would have used it by now I guess. Thanks again,

Corrie

Neco
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Post by Neco »

Well, it's not that it isn't an option. It is a real option as a stand-alone medication, just not for the purpose you were describing.

A lot of doctors in particular carry around preconceptions about methadone/suboxone users, as it is most widely used for drug addiction maintenance. That and some of the risks that come with the first few doses, and all the other medical hoops these days, make it not worth it for the doc to know or care about.

If you are finding other treatments lacking, these are excellent solutions to try, as long as you can find a willing doctor who will look over the research you bring and form an unbiased opinion.

rlsgirl
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Joined: Wed Nov 26, 2008 2:28 am

Post by rlsgirl »

I had to come off of the pain meds i was taking for three day and have mild to moderate withdrawals to start the suboxone. It has been very strange for me because the pain meds really did not ever keep me from having rls I just didn't have it as bad. With the Suboxone I don't have it at all. it has been wonderful. I'm very interested as well as the addiction specialist to see what will happen when I start to taper off of the suboxone and stop taking it all together. Will the rls come back? he has some education siminars that he is going to in Dec and Jan and while hes there he is going to bring my case up to the other drs there to see if they have treated anyone with rls with this kind of medication. he has never had anyone come to him with an addiction that was taking pills for rls. I believe all of his patients use for the high. That was not my case, I simply wanted to keep control of the rls so that hopefully that night I would be able to sleep. i can say for me it has been a blessing not only to help me get my life back from the addiction but also to bless me with keeping the rls at bay. I seriously urge anyone who has not taken it to try to find a dr. to put you on it. or hell, if you take pain meds now tell them that you have an addiction and want to go through the treatment. I would do it if I knew along time ago that this stuff would of helped me. Greatest thing is that i take it and feel no different. i dont feel tired, i don't feel numb. Just feel like me. and that in its self is wonderful. Just to feel like me again is great. i have been taking so many different meds for so many years that I didn't even know what normal felt like anymore. Now I feel normal.

rlsgirl
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Post by rlsgirl »

Zach wrote:If you're dealing with an addiction specialist I'm not really sure how they could kick you off the stuff if its helping and you voice no desire to taper off. At least not with a good reason, like a relapse in abuse, etc.

Suboxone is something I have thought about considering for my RLS as well, as it is an alternative drug to methadone for maintaining addicts, and many seem to like it a lot better. I'm pretty OK with methadone right now, but I do want to look into it incase I am ever cut off from my doctor. I think they offer it at my county services dept, where I get counseling so I guess I'll find out one day.


In terms of RLS treatment..
I'm not really sure this drug is an appropriate temporary method for substitution of other opiates either. First and foremost if you are taking any other opiate you cannot immediately start suboxone unless you beging to go through withdrawal, that includes any nausea, pain, sweating, etc you may go through based on what you're taking and how big the dose is. If you tried to administer the drug too early it would immediately compete for, and knock your medication off your receptors sending you into full-withdrawal very rapidly, and it will be very very uncomfortable, especially when the RLS comes back at the more severe temporary level.

Like methadone, you should either be on suboxone for the long haul, or not be on it at all. In addition to this I suspect it would serve to do nothing for drug-holidays because these drugs also skyrocket your opiate tolerance across the board. This is only really going to be an issue for RLS patients, since when you switch back it is assumed you won't be able to physically stand being tapered down to below your normal comfort level dosage for a long period of time. Anyone who is taking methadone or suboxone one day, then the next switches back to their old meds, will likely find their tolerance was not as diminished as planned; if not worse than it was before.

I can speak from experience in saying this, because I tested it out with 10 -15 Vicodin a few months ago, pretty much the entire prescription - and it barely put a dent in me, almost didn't even feel the stuff. But that's just these medicines doing their job. And in that regard I am pleased at the result.

Anyone who wants to try drug holidays, would do better to identify a benzo they can take for a week or so, or try Ultram. Substituing one opiate for another is very hit and miss even in the best of circumstances, unless a doctor has enough experience to know a certain combination can be rotated successfully.



Check it out at www.suboxone.com and you should see an option there that will tell you what drs. in your area deal with it. There are quite a few from what I see every where. i would consider it if I were you. Its truly wonderful wonderful stuff. I would love to know if anyone else has tried it and what the out come was. I would be wonderful if this drug actually helped people with RLS. I swear i have not had RLS one time since the first day of taking this medication. Its really a trip.

SquirmingSusan
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Post by SquirmingSusan »

Greatest thing is that i take it and feel no different. i dont feel tired, i don't feel numb. Just feel like me. and that in its self is wonderful.


That's how I feel with the methadone. It's like taking a Tylenol. No high, just relief.

But this is all very interesting about the suboxone.
Susan

rlsgirl
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Post by rlsgirl »

SquirmingSusan wrote:
Greatest thing is that i take it and feel no different. i dont feel tired, i don't feel numb. Just feel like me. and that in its self is wonderful.


That's how I feel with the methadone. It's like taking a Tylenol. No high, just relief.

But this is all very interesting about the suboxone.


Its great, I have felt 100% like myself since I've been on it. Of course I had to go on it for becoming addicted to pain medication and hate that fact but I have never taken pain meds for a high or to feel numb. I only took them to keep my legs under control. I'm just glad that I had enough sence to see that I had become addicted to them physically. But maybe things really do happen for a reason. Maybe thats what needed to happen for me to find something that really would give me true relief.

I think you should look into it. My dr tried to put me on methadone at one point but so many people have told me such horror stories about it that I did not want that for myself. And I was very very afraid of addiction from methadone. I have spoken to many people that have taken suboxone to come off of pain killers and other drugs and had no problems coming off of it. They had a specialists that tapered them down to nothing and they were fine with it. so i'm very comfortable with it.

ViewsAskew
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Post by ViewsAskew »

I am happy that you are comfortable with your current treatment, rlsgirl. I imagine some others will be grateful to hear your story. I also imagine yet others will still be comfortable continuing their opioid treatment and not feel compelled to switch. Both seem valid options depending on your perspective.

For anyone reading this,I do want to stress that there is a difference between addition and dependence. Addiction is when you psychologically will do anything necessary to get the drugs - you NEED them and you MUST have them. Many of us get physically dependent on the drugs we take for RLS - your body needs them or it starts to feel bad, but you simply use them to control the problem, not to attain a specific feeling.

The decision to take a drug that causes physical dependence is a personal decision. It is simply part of taking certain drugs. We either decide we can live with being dependent on them and knowing we'll go through a physical withdrawal...or we decide we cannot. I think everyone should be told of the potential problems associated with dependence and how it can affect you. And that we should consider it in our decision regarding whether to take something or not. And, possibly, that we should consider taking steps to limit dependence in certain cases. But, ultimately, if we feel this is what is needed to lead a life free of RLS (or whatever else may be helped by these drugs), then that's what we need to do.

It may seem as though I'm picking nits, but I do think it's a terribly important distinction to make. The word addiction carries so many connotations and can scare us so much. Especially for those who're unsure of whether to take some of these drugs or those who are taking them.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Aiken
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Post by Aiken »

There's an interesting point in what you say, rlsgirl. I wonder how many opioid addicts get addicted due to the buzz vs. simply because they want out of pain and overdo their dosing to make sure.

I mean, really, I haven't gotten much of anything buzz-like out of my hydrocodone since a few weeks after starting it last spring. My body+mind get accustomed to it quickly, as long as I don't escalate the dose. Still, even if I don't get an opioid high, I sure as hell get a relief high. Relative to how I feel with rls raging, especially in summer, feeling normal is a massive high. I'm just so happy when the rls dies down and I can think and do things. That alone always makes me want to take more, so I have to be pretty iron-fisted with myself about not upping the dose. I don't think it would be hard at all, not in the slightest, for me to get addicted otherwise.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Neco
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Post by Neco »

I have to agree here.

We're all glad for your success tory rlsgirl, but it sounds like what you had was a moral problem with the fact you had become dependant on opiates to relieve your RLS.. There is a very big distinction between dependance and addiction. As you say you were not taking them to get the buzz they give, and only relieve your RLS I believe you were dealing with dependance which is a medically normal and acceptable situation to be in, with any drug that the body becomes accustomed to.

Also the reason you get better relief from suboxone is likely because it is still more powerful than what you may have been taking to control your RLS.. Various subcategories of opiates have different efficacies in any patient.

I could take Tylenol #3 with codeine and it would vastly reduce my symptoms to 90% at best. However Hydrocodone (Vicodin), and Oxycodone both can completely eradicate my RLS symptoms. In my case I became an addict in the real sense of the word. I craved the high from hydrocodone, and tylenol /codeine (they feel very similar) and to a lesser extent, Oxycodone and Tramadol. I knew what it would take to get very substantial relief but I constantly wrestled with taking more, way more. At one point I was taking 100mgs of hydrocodone every day for a couple weeks. I psychologically did not feel normal or functional without it, and I would do anything to get early refills, get pills from other people if they were willing to give them up, etc.

That is truly what addiction is about. I'm not trying to make you feel bad or anything, just trying to show you the difference. Many people mistake dependance/tolerance for addiction. It's an easy thing to do. I just hope that no doctor ever told you that you were addicted, if you were taking a couple of pills every day and nothing more. If you came to the conclusion you were an addict on your own, then that's OK. People do that all the time, and sometimes they just aren't aware of the difference; But I hope a doctor didn't tell you that you were an addict, without a good cause or pattern of behavior / high dosage.. If one did, that was entirely irresponsible.

That being said. I have been on Methadone for about a year now, I think.. I can't remember how long its been entirely. But yes I do know it is still possible for people to get addicted to methadone, and a lot of Heroin addicts in particular claim it is more brutal to come off methadone than heroin. As an RLS patient I'm not concerned though as I'll be taking it for the rest of my life anyway..

I have no doubt Suboxone is a great drug for helping to kick a bad habbit, or for a chronic injury or illness, like RLS. But all people are different so we try to keep that in mind. No one is attacking you for saying Suboxone is awesome :)

I know myself and my fellow methadone patients believe strongly in our drug though. It has its place within the medical community just like every other drug. Some people think methadone works better, some think suboxone works better, but in the end it all comes down to personal physiology.

Perhaps one day in the future I may need to move to suboxone, but hearing that it has helped your RLS will help me do it with confidence, if I am ever forced to make that decision.

SquirmingSusan
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Post by SquirmingSusan »

The actual suboxone.com website is calling dependence addiction; it is using the terms improperly. What they are calling dependence is really addiction. So that doesn't help with the confusion out there.
Susan

SquirmingSusan
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Post by SquirmingSusan »

From the suboxone.com website:

(NOTE: SUBOXONE is not indicated for pain management. Patients with a clinical need for pain management should not be transferred to a SUBOXONE regimen, even if they are physically dependent on opioids.)
Susan

Aiken
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Post by Aiken »

That's just because they only have FDA approval for being an addiction treatment aid. Physicians can prescribe the drug for a different reason if they choose, but the pharma company doesn't want to be responsible for the results.

My own sleep doctor had suggested suboxone to me, but something about it made me nervous (I forget what) and we went with methadone instead.

---

By the way, Suboxone has naloxone in it, which keeps most other opioids from working. Since you're officially using it for addiction recovery, that's appropriate. However, naloxone is a mild RLS irritant, so for RLS it's actually working at cross purposes with the active ingredient (buprenorphine hydrochloride). It also means you have limited options for pain relief during emergency care or surgery. You should definitely carry a card or bracelet or necklace that says you take suboxone.

If you ever cease to use Suboxone for addiction recovery, and you feel safe that you won't get re-addicted, you could switch to the same active ingredient without the naloxone, which comes in a form called Subutex. Subutex is technically meant for the first few days of transition to Suboxone, so the naloxone in Suboxone won't make you go into sudden withdrawal from the previous drug.

I don't know if any of that is useful for you, but it might be for someone else reading this post.

More details here: http://www.fda.gov/CDER/DRUG/infopage/s ... tex-qa.htm
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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