Has anyone tried buprenorphine?

[Stainless]

BBC has a video on RLS today. Most is common knowledge on this website. But one woman who described severe RLS like I suffer from, says in the end she got complete relief from buprenorphine. I looked it up and found it similar to methadone which I doubt a doctor in Florida would prescribe. Just curious if anyone had experience with this drug.

[Bannia]

I was on it for around 3 years. I switched to it after I augmented from Tramadol. It definitely stops RLS, but my experience wasn’t great. However, I think that was because they started me on a dose that was way too high, so I spent most of the time trying to reduce that dose to find something that worked for me. Every time I seemed to find a dosage that was stable, I would become unstable again within a month. I don’t know if it was just the amount they had me on, or it was the addition of Naloxone in the medication, but I could never stabilize and feel “normal” for any period of time. I ended up tapering down and stopping a year ago. The withdrawal was the most brutal thing I have ever experienced. It took 3 months to lose all of the symptoms. Plus, my RLS returned in a way that was 100 times worse than I had ever experienced before.

I think in very low doses, it would probably be very effective for some people. Unfortunately, they started me at 8 mg, when it probably should have been 1mg, maximum. That definitely tainted my experience and view of it. As I said though, I never had RLS symptoms while using it, until I went into withdrawal.

After quitting, I tried multiple medications for my RLS, but none worked. I am refractory, so DAs don’t work, and Horizant and a few other medications also failed. 8 months after quitting Suboxone, I broke down and went on low dose Methadone. I am taking 2.5 mg once per day, and my symptoms are under control and I feel much better than I did on Suboxone. I also like the fact that it is a pill, rather than a sublingual strip. I always found those to be difficult and a little gross.

If you have tried Methadone and not tolerated it well, perhaps Suboxone would work for you. I think it’s different for everyone. Just be sure they start you on a very low dose. 0.5mg should probably be sufficient.

[DreiTageWach]

I'm on Suboxone (Buprenorphine+Naloxone) at the moment and it is extremely effective for me. Way more effective than anything else I've tried so far. But as Bannia said, it seems like doctors tend to prescribe unnecessarily high doses. 1mg is more than enough for me, currently trying to go down to 0.5 mg.

[Stainless]

Drei, are you in the US?

[DreiTageWach]

@Stainless I'm in Canada.

[stockton2malone2]

Of all the opiates (and I tried them all) it is the one that works best for me. For some reference though from my understanding methadone typically works better for most people, and bupre was the very last one my doctor tried.
I like the sublingual aspect because it uptakes quicker and as one of the people who gets an alerting side effect from opiates this means it doesn't have me wired right around bed. I also find it more effective at reducing my RLS than methadone and way better than any of the other opiates, no idea why though. Lastly it is schedule 3 in the US which makes prescriptions way less of a pain in the butt. Compared to the posters above though I take a higher dose (8mg).

[EdSoFlo]

I skip the long story of my RLS and it's treatment (which began with official diagnosis in 2008 in Los Angeles, where I'm from.)

After a dreadful couple of years in South Florida in terms of RLS care (I feel for you if trying to find it, in my experience it's simply non-existent) I moved to Atlanta in 2018 in rough shape and thankfully started treatment with Dr. David Rye at the Emory Sleep Disorder Clinic (both Dr. Rye and Emory I HIGHLY recommend, although getting in takes quite a while-it's worth it.) I eventually wound up trying Buprenorphine, and it has been, in a word, an absolute godsend for my RLS. It just slams the door on it, has made it essentially a non-factor in my life (except when I do stupid things such as my stubbornly continuing my vigorous midday walks last week, in compression shorts/shirts, even though the heat index was well into the 100's...that will get you heat rash, which itches in an UNGODLY fashion and for which I took Benadryl to relieve, forgetting it makes my RLS go absolutely bananas!) Moreover, it has no other psychological effects or at least any I'm cognizant of on a conscious level. It's LONG acting, and is also a schedule III drug, which makes it far easier to prescribe and fill than the other opiate/opioid medications used to treat RLS which are of course schedule II's (although there can be a snafu if the pharmacist processing the script doesn't know what they're doing...it has to be entered for 'chronic pain' or else it'll get kicked back unless it's from a specially licensed addiction specialist, which makes no sense as they use the kind with nalaxone added, but...welcome to healthcare in America lol. I literally had been going to the same Walgreens for about a year filling it with no problem and then during the pandemic when it was hard to keep staffed I guess they had a new pharmacist who told me point black she can't fill it, period. No way, no how, impossible. I went to a different Walgreens, 2 miles away, boom-no problems. Luck of the draw.) I would say the only downsides might be a bit of a lack of motivation during the day (nothing approaching problematic however) and a noticeable decrease in libido (which IS indeed a bit problematic.) But overall the positives far outweigh that and it's been the best medication I've ever taken for my RLS, hands down. I highly recommend it from my personal experience, and I'm not exactly sure why it's not used as more of a front-line opioid option for those of us whose RLS requires one to be controlled. I imagine it's due to it's rather arbitrary pigeonholing as an opiate/opioid addiction treatment tool...who knows. Hopefully that will change, as if it can control my RLS, which is pretty off the charts, I imagine it would most others as well. It breaks my heart that many people NEEDLESSLY suffer with severe RLS due to simple luddite medical ignorance, venal politicization, and doom media hype of incredibly safe and effective treatments.

[Rustsmith]

If libido is an issue with buprenorphine, I highly recommend going to your PCP and asking to have your free and total testosterone levels checked. The opioids are know for suppressing testosterone production and this is easily fixed with regular injections. I was also having issues with depression due to using methadone (buprenorphine also acts as an anti-depressant, so this side effect shouldn't bother you), but low T can cause other problems, so the low libido side effect is just the most obvious and easiest to fix.

[debbluebird]

I saw the Doctor today. She wants me to try Buprenorphine. I am hesitant. I already take gabapentin, tramadol, a muscle relaxant, and THC gummies. I also have a spinal stimulator. I still have bad nights here and there. I was better when I first got the stimulator but I think my RLS has progressed.
My first thought would be to try and eliminate some of the other meds if this works.
I don't know.

[Rustsmith]

Deb, my thought would be that it seems odd to combine tramadol and buprenorphine since both are opioids and that your doctor seemed so adamant against methadone. The main difference that I see between buprenorphine and methadone is that buprenorphine is Sch III and methadone is Sch II, so buprenorphine requires less paperwork for the doctor's staff than methadone. By comparision, tramadol is Sch IV, but due to the way that it is metabolized, its effective strength is limited when compared to the other opioids (which is why it is Sch IV - you cannot take enough of it to become addicted unless you are highly susceptible to that side effect).

[debbluebird]

I would stop tramadol if I started the buprenorphine and maybe at least reduce the gabapentin. Thanks for your in put.

[debbluebird]

I've decided. I'm going to try the buprenorphine. I've already stopped the muscle relaxant. I wasn't sure about how much it was really helping anyway. It wasn't helping. I will wean off tramadol after I start the buprenorphine. I hope to reduce the gabapentin too.

[Rustsmith]

Deb, I have probably said this before, but be sure to slowly taper the tramadol to avoid withdrawal from its anti-depressant properties. When I tapered down from 200mg of the ER form, I went to 100mg ER for a few days, then switched to 100 mg/day of the regular form (50 mg at lunch and 50 at bedtime). I then went to 50 mg at bedtime for a few days, then 25 for about a week before stopping. All the while, I was taking my full strength methadone at lunchtime.

[debbluebird]

Thanks Steve. Mine are 50mg tabs.

[debbluebird]

I started the buprenorphine after stopping the muscle relaxant and the tramadol (one at a time). I also stopped the gummies. Maybe I will be able to cut back on gabapentin too.
I've had 3 nights of taking the buprenorphine 0.5mg. They are 2mg films. She gave me 60 little packets. They will last 8 months. Wow. The only side effect so far is a little itching. Even that has improved over the 3 nights.
So far, NO RLS. I was hoping that would be the case. So I've slept all 3 nights. I was awake more during the night on the first night. I even had a 2 hour nap yesterday.