Suboxone for RLS (wonderful medication for mine)

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
FidgetBoy
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Post by FidgetBoy »

Yesterday I ran out of oxycontin-- and had yet to pick up my refill. I was shocked out how bad my RLS was without the oxycontin in my system! I tried to sleep without it and was miserable. My wife suggested I take a small sliver of one of her old suboxone tablets. (she had taken it 6 months ago to get off of oxycontin after neck fusion surgery)

I bit a tiny, tiny, bit off this little tablet (because my wife said it was pretty strong) and I let it dissolve under my tongue. I am telling you-- in my life, I have never had a drug work as fast and as as well as this one. It kicked in within 10 sec-- my RLS went from uncontrollable to completely gone... in 10 sec! I took it at 10 pm last night-- it's 1pm now and my RLS is still barely noticable. It did give me a pretty bad headache and I felt hungover this morning-- but this drug may be a real viable option for those of you who are looking for another treatment option. If it weren't for the headache-- I would of seriously considered switching...)
Josh

Neco
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Post by Neco »

Well, I don't know about the headache deal, but its possible it could have been the result of something else.. Usually suboxone is only given to someone once they are actually in full withdrawal. I suppose it could be that the suboxone knocked any leftover oxy off your remaining receptors and this somehow contributed to it..

It's been described as no high period, but slightly sedating. Unlike methadone it is supposed to be a true opiate blocker. I would probably try it at some point, if not for its ungodly cost.. Although congress has taken some steps to end insurance discrimination against people that need these kinds of expensive drugs, but that doesn't really help the uninsured..

Glad you didn't have to go through hell until you could get more Oxy though.

Polar Bear
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Post by Polar Bear »

Really glad you got something to work so well when you were in such a tight spot.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Neco
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Post by Neco »

I just heard that Suboxone reportedly can trigger migranes in people who are prone to them, and can also make them worse.

FidgetBoy
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Location: Minnesota

Post by FidgetBoy »

Ahhh-- I do get really bad migraines-- and while this med did absolute wonders for my RLS, the headache was really nasty. :roll:
Josh

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

withdrawl

Post by rlsgirl »

YOu will get a headache if you take Subutex/suboxone before the opiot is out of your system. I had my bag get lost while on vaction of course it had my medication in it. I took a couple Hydrocodine while I was gone just to cut the rls alittle bit and when I got back went to the dr to get my refill. When I took the sub. I got the worse damn headache I have ever had in my life! SUCKED and I mean SUCKED! LOL I can assure you thats what it was from.

I'm in a situation now that I don't know how to get out of. The dr. I'm seeing for this medication has me on it for a physical addiction. Now i'm starting to come off of it and the RLS is back in full swing. He is telling me that he can not keep me on it for reasons other than addiction and at this point he says I should not have an issue with the addiction. I do agree with that I don't feel like I will However, I will have another issue. The RLS and when I have the RLS I know the only thing that will make it go away is the pain med. so at some point i will get so tired from no sleep and I will start to take them all over again!

Has anyone seen anything from the mayo on this medication being used for treatment of rls that I can show to a dr.?

mackjergens
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Post by mackjergens »

rlsgirl,
have you ever tried Ultram(tramadol) its a non narcotic pain med. I had taken hydrocodone for about 5 yrs when I heard about tramadol and ask my Dr if I could try it. IF I take it before the rls kicks in, it works very good for my rls, but if I wait till the rls kicks in, then I end up taking hydrocodone to stop it.

You should talk with your Dr about Ultram(tramadol) you might be able to replace the hydro with tramadol.

ViewsAskew
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Post by ViewsAskew »

I haven't heard of it ever being suggested for use - but that doesn't mean it hasn't. I wonder what a random Google search would turn up on the effect of suboxone or subutex on RLS.
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.

rlsgirl
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Post by rlsgirl »

I have tried Ultram but it made me rather sick for some reason. I passed it off as a temp side effect but after 4 weeks of being sick everyday my dr. took me off of it. I feel like its just a never ending battle and now that I actually found something that really does work but is for something else I can't continue to take it. I'm going to try to figure out a way to continue on with this medication I just don't know how yet! LOL My other major issue is finding a neuro dr that actually gives a crap. To have a dr. sit infront of me and tell me that some people with RLS just have to suffer is not acceptable to me. I know I can not take the pain killers for the reason that my body for what ever the reason becomes very addicted to them. But why not figure out a way to keep me on what does work and will not cause me health issues? i know the dr. i'm currently seeing for the addiction really cares about my health and would keep me on it if he could but I don't believe he is willing to lie to keep me on it either. I certainly can not afford it out of pocket! good god!

ViewsAskew
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Post by ViewsAskew »

rlsgirl wrote: To have a dr. sit infront of me and tell me that some people with RLS just have to suffer is not acceptable to me.


That's just so wrong. so, so, so wrong.

Good heavens. What would these same people feel if this was happening to 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.

Neco
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Post by Neco »

That's BS... I had concerns that this was gonna happen, since you were seeing an addiction specialist...

There is NO reason why suboxone can not be used a maintenance drug, just like Methadone.

There is no reason to ween you off it, as I said... did you try explaining to him you would just end up addicted to painkillers again? There is no medical reason why he can't continue to give you the medication AND it can be justified by the fact that once they take you off, you will become addicted again and have to see them all over again.. I hope you tried to make that point to the person prescribing it..

There is nothing wrong or unusual about opiate maintenance therapy. That's basically how Methadone clinics work - some people take it for the rest of their lives. If you can't convince them to keep prescribing you suboxone, then try to look for a doctor who will prescribe you Methadone instead. It is first and foremost a pain medication, despite what others may think, and it can be prescribed for any reason that other pain medications can.

You should call your local county human services, and ask if they give prescription vouchers, to those who cannot afford stuff like Suboxone but need it for addiction (don't neglect to tell them about your RLS, just stress that if you are forced back onto normal painkillers you will become addicted again and need to go back to a addiction treatment, and you just want to stay ON the drug)

Forcing someone off a medication they clearly need is LUDICRIS, no matter what the condition is. If you can't get anyone to keep prescribing you Suboxone then please also ask about getting onto Methadone.

They have clinics which are horribly expensive (as much as suboxone AND you have to drive there to get your dose every day) so I wouldn't recommend that route unless you absolutely have to.. Otherwise you can get it from a personal physician or just about any other doctor.. Psychiatrists can't prescribe Methadone in certain situations (if at all) and this may be one of them.. But for whatever reason they can prescribe Suboxone without a problem from what I've been told.

This is totally bogus, but I hope you ultimately get things worked out in some way. I know I fruitlessly tried to convince you, you weren't really addicted to pain meds, based on the doses you were taking.. But I won't go down that road again. I just hope you can find a way to continue getting the meds you need.

ViewsAskew
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Post by ViewsAskew »

There, unfortunately, is precedent. My understanding is that doctors need some precedent for prescribing a drug. So, if no study exists and the drug is not approved to treat a condition, doctors are not going to write it. I'm wonder if a pharmacist would be able to say, I won't fill this, in case a doctor did it anyway. I know an insurance company would NOT have to cover it. It would be interesting to hear from Josh.
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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Re: withdrawl

Post by Aiken »

rlsgirl wrote:YOu will get a headache if you take Subutex/suboxone before the opiot is out of your system.

I would think that subutex would not do that, as it does not contain naloxone (suboxone does, subutex does not) and should not cancel any existing opioids. Replace them, perhaps, but that shouldn't produce symptoms.

I am, however, uncertain whether I'm right about this.
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 »

As far as I know, pharmacists cannot reject a prescription simply for that reason.. What's more you are NOT obligated to tell the pharmacy why you are receiving your prescription. As long as it is legitimate and the doctor signed it, its not really their business.

I know I had fears like this before, because at one point the pharmacy asked (a person working with my doctor at the time) why I was getting "All this medication" and she told them something to the affect of, the doctor signed off on it and that's all they needed to know. I know he has said that to me before too, that if someone had that bad of a problem with it then they shouldn't be bothering me, they should ask him and let him deal with it instead.

I know pharmacists can decline to fill a prescription in some cases, but the worst of that simply means finding another pharmacy to try.

rlsgirl
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Post by rlsgirl »

Okay I have good news.....Went to my dr. yesterday.....he went to a conference not to long ago and met up with a neuro dr. that use to work at the Mayo Clinic he now has an office here where I live. He told my dr. that although Subutex has not been given out to pts. with RLS for treatment of it some who have been in my situation found relief by using the medication and are continuing on with the use of it. What he is having me do is write him an essay on where I was before Subutex (my quality of life) what kind of meds I have been on that did not work, the addiction to the pain meds, and how Subutex has not only helped with the RLS but given me my quality of life back. He also wants me to include the fact that i have fears of going back to the pain meds while being off of the subutex. I'm also going to start having this new Neuro dr. follow me. All of this just for the event that his files get an audit. He wants to have the documentation there as to why i'm taking the medication for reasons other than what its intended for.

So I started my first dose last night and slept my **** off! :D I swear this has been the most wonderful med I have ever been on. Sucks how I had to find it but atleast I found it. i would seriously consider talking to your neuro drs about this medication if you are in the position that i was in and nothing was working. i would be happy to give you the Neuro drs. info that i'm going to be seeing in the event that you feel like it would help you get put on this medication. This dr. knows about it and has seen it work for others so maybe it would help you as well.

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