Has anyone used Suboxone (buprenorphine) for RLS?

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rikku9
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Joined: Sat May 07, 2016 1:25 pm

Has anyone used Suboxone (buprenorphine) for RLS?

Postby rikku9 » Fri Jul 08, 2016 11:35 pm

I was listening to the RLS Foundation "What is the Role of Opiods in RLS?" video on youtube and Dr. Early talks about how buprenorphine has less respiratory depression that Methadone, an antidepressant effect in clinical trials, causes less constipation, less tolerance, and less of the hypersensitivity to pain that methadone can cause. It sounds overall like a better alternative to methadone so I'm wondering why methadone is used more than buprenorphine?

I'm on methadone right now and while I can sleep relatively ok (my RLS still wakes me up sometimes esp if it's a bad night), I'm having major issues with stomach problems (horrible stomach acid/consipation/nausea), fatigue, depression (although I don't know if that's caused by the medication or just RLS getting me down) and horrible muscle aches that I've never had before.

Right now I only take the methadone 4-5 hours before bedtime so that it kicks in before I go to bed (not sure why but it takes a long time to kick in for me).

Has anyone used buprenorphine and does it work? Is it something you have to take through out the day? Are there bad side effects from it?

ViewsAskew
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Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby ViewsAskew » Sat Jul 09, 2016 6:20 am

I hated the stomach acid from methadone! You are the first person to mention it that I remember.

If you search on suboxone in the search box, you'll find many, many posts about it. It has worked for some of our members, others not so much. I suggest the search because people tend to come and go based on how well meds are working :-). So, looking back on past posts is the only way to get an overall picture from a variety of members.

My personal opinion - and it's based on my experience, not science - is that none of the drugs we take should be taken exclusively for long periods. Many of us have issues this way. But, when we alternate and/or use low doses of multiple things, we tend to do best.

I had tolerance using methadone. 10 mg became 15. 15 became 20. 20 became 25. That was in 2009 or so. I was determined to come up with an alternative. I started alternating pramipexole (I'd augmented terribly on it in just 2 weeks) with methadone. I did that for several years. I used methadone exclusively again around 2013, then again started alternating in 2014 and still do. Finally, after almost 7 years, I have had to increase the methadone slightly, but it's because of progression, not tolerance. And, I've not augmented, something I couldn't avoid before.

It's not perfect by any means. But, definitely something to consider.

OH - I had depression and terrible muscle aches (almost in my bones) several years ago. By chance, my gyne checked my vitamin D levels - they are very, very low. Once I improved my D levels, the depression stopped as well as the aches.

One other thing...most opioids (except methadone) cause me to be tense - I find myself with a clenched jaw and am often angry at the world. For some reason, I am very prone to what is called trigger points - little spasms within the muscle tissue. When I am tense like this, I get MANY more of these trigger points. This causes horrible muscle pain. Not sure if you feel something like this - ignore it if it's not. In case it is, here is a site with a lot of info about the trigger points. https://www.painscience.com/tutorials/t ... points.php

Hope you find what you need.
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.

rikku9
Posts: 22
Joined: Sat May 07, 2016 1:25 pm

Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby rikku9 » Sat Jul 09, 2016 6:54 pm

It's interesting that you mention you had stomach acid as well since I was wondering that given that you grew tolerant to methadone. It doesn't seem to be a common side effect but it does seem to be linked to growing tolerant to methadone. I think the same might be happening to me as the same dose seems to have less and less of an effect and I thought I would have to increase my dose again, then I found this while doing an online search:

"if you have an acidic stomach or body pH then you will notice less from your dose, this starts off a catch-22 where the methadone (and its side effects) cause stomach acidity, the acidity lowers the effective range of the methadone and the patients increases their dose (or just suffers) causing more problems and round and round the merry go'round we go. It wasnt until I had been on methadone a good decade before I realized the correlation, I wound up with GERD, an inflamed stomach and IBS type symptoms. I was put on Nexium and told to eat foods with a higher pH, not only did most of the nausia go away but my dose was a good 1/3 stronger and had to be reduced! So, yes the effect of opiates is generally affected by pH of the stomach and system. You may find benefit from looking into potentiators as a way of getting more pain relief from a smaller dose of opiates. (thus, less side effects) White grapefruit/juice is good, as are antihistamines and proton pump inhibitors like Nexium. Another irony I came across was that in the beginning I took my dose right up to 225mg per day split into 3 doses, I kept feeling sweats, nausea, flushes and anxiety, I assumed it was the methadone not holding me properly so I kept going up, it wasnt until I went back down some years later that I noticed the side effects actually getting less instead of worse!! it was the methadone toxicity causing these problems not withdrawals as I had thought, to me this was a major shift in thinking about my dose. me,"

I also found a few more references about stomach acid reducing the effectiveness of methadone but it doesn't seem to be common knowledge or something that doctors talk about. It seems that acidic conditions cause methadone to not absorb into the bloodstream as well, and we have the compounded issue of having methadone increase our already acidic stomachs. Since reading that I've been taking Tums starting before I take my nightly methadone and I think that has helped to make it more effective and I haven't had to increase my dose which is great. If you haven't tried that it's worth a shot as that could be the reason why methadone started getting less effective for you.

Here is the original thread:
http://www.steadyhealth.com/topics/meth ... ond?page=3


Regarding the Vitamin D, I was tested for that last year and found to be very low as well so since then I take multivitamins everyday. For a while I took Vitamin D tablets as well but now just the multivitamin, maybe I should go back to adding Vitamin D tabs as well.

Hmm I wonder if I could have the trigger points you mentioned. It does feel like my legs are constantly spasming and that's why my muscles are always killing me. I will have to check out that article you linked later on today and also do more research on buprenorphine. I'm assuming you never tried that for your RLS Viewsaskew?

ViewsAskew
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Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby ViewsAskew » Sat Jul 09, 2016 10:23 pm

Fascinating! I looked this up years ago and didn't find anything. I forgot about it after awhile and never search about it again. I've had to use an acid reducer for years because of the methadone - it hadn't helped as far as I can tell (keep the dose low).

No, I haven't tried the buprenorphine - about five or six opioids, three or four of the alpha 2 delta drugs, several benzos, three or four of the dopaminergics...but not buprenorphine, lol.

The iron infusion helped me the most...but only for a few weeks. I need another one to see if I can reduce meds by 45% as I did when i had the second infusion.

per the trigger points, my outer thighs, hips, buttocks, upper arms, shoulders, neck, head, and back all have the dratted things. It hurts to touch them and they feel terrible. Better sleep helps...and we all know how that goes!
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.

veldon75
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Joined: Sun Sep 21, 2014 3:45 pm

Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby veldon75 » Mon Jul 11, 2016 9:27 pm

I asked my pain Dr. about it and he said he didn't think it wasn't a good idea, he didn't seem to want to elaborate but maybe because Drs. are monitored by DEA and Suboxone is really suppose to be used for opiate withdrawal. I wanted it for RLS. I used to work for a Psychiatrist who prescribed it for drug addiction.

Rustsmith
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Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby Rustsmith » Mon Jul 11, 2016 10:44 pm

When I first met my current doctor, I explained my role as moderator here on the board. So after we had finished with the normal doctor-patient discussion of the treat program for my RLS, she asked me a couple of questions (talk about an interesting role reversal!). One of her questions was whether there were any of our members who had any experience with Suboxone and whether it had been successful. I told her that the reports were quite limited, but that I could remember at least one person who was using it successfully, but that it had been a last ditch effort by that person's doctor after they had tried just about everything else.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

veldon75
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Joined: Sun Sep 21, 2014 3:45 pm

Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby veldon75 » Tue Jul 12, 2016 1:03 am

I asked my pain Dr. about it and he said he didn't think it wasn't a good idea, he didn't seem to want to elaborate but maybe because Drs. are monitored by DEA and Suboxone is really suppose to be used for opiate withdrawal. I wanted it for RLS. I used to work for a Psychiatrist who prescribed it for drug addiction.

ViewsAskew
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Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby ViewsAskew » Tue Jul 12, 2016 3:34 am

Doety was the first person here, that I know of, who used it. At first, she liked it. But, it didn't work out for her, at all. Do look up her posts to see her experience. EeFall has quite a bit written about his experience and how he came to use it. Also worth reading. I seem to recall one or two other people mentioning it...but might be mistaken.
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.

crl363
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Joined: Fri Jul 05, 2013 7:21 pm

Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby crl363 » Mon Jul 18, 2016 1:43 pm

Hi Ann,

How do you alternate on methadone and pramipexole? Every other day? I am on 10mg daily of methadone and 300mg of gabapentin. I want to get off of gabapentin because of the short term memory loss it is causing since I’ve been on it. I have tried to get off of it but it caused an increase in methadone which I am trying to avoid. I am thinking if I can alternate on methadone and ropinerole I could kill two birds so to speak.

Bob

ViewsAskew
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Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby ViewsAskew » Tue Jul 19, 2016 3:45 am

Hi Bob, I have alternated in different ways. I originally alternated every two days. Then every other day. I've played around a bit. For a long time I took pramipexole 5 days, then methadone 2 days. If you already take methadone daily and aren't worried about dependence, you might try taking only methadone on the weekend, then taking ropinerole during the week along with a 1/4 dose of methadone. That allows it to remain in your system - even though it's just a small amount - and not cause withdrawal issues.
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.

crl363
Posts: 66
Joined: Fri Jul 05, 2013 7:21 pm

Re: Has anyone used Suboxone (buprenorphine) for RLS?

Postby crl363 » Tue Jul 19, 2016 11:40 am

Thanks Ann!


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