Just wondering what people think about the recent study below? Study population was people with opioid use disorder (OUD) who are taking buprenorphine to manage it. Apparently an unusually high percentage of participants had RLS symptoms. I thought Bup alleviated symptoms? I’m in the process of getting my doctor to prescribe for me during my transition off Pramipexole. Also wonder if people predisposed to OUD have low dopamine and that’s why so many have RLS?
Wipper B, Cooke MP, Winkelman JW. Prevalence of Current Restless Legs Syndrome Symptoms Among Patients Treated with Buprenorphine/Naloxone for Opioid Use Disorder. Nat Sci Sleep. 2023 Oct 21;15:851-859. doi: 10.2147/NSS.S427403. PMID: 37886689; PMCID: PMC10599248.
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Buprenorphine dose for RLS is usually very low. Average 1- 1.5mg. For opioid abuse/ withdrawal it is much higher. Between 8 and 32 mg.
Opioid addicts on high doses of heroin report severe RLS as one of the main withdrawal symptoms. So if they're switching from high dose heroin and opioids to a lower dose equivalence of Buprenorphine, I would imagine that they will have RLS as a result of the withdrawals and the Buprenorphine dose not matching their previous high opioid dose. The report mentions that RLS as a symptom of opioid withdrawals can last years. So their RLS is a symptom of opioid withdrawal, not low dopamine. RLS patients don't have low dopamine, we have faulty or damaged dopamine receptors, which make the uptake of iron and dopamine more difficult.
It is a real problem for opioid abusers, because RLS is one reason why people go back on higher dose opioids. They cannot bear the RLS. The study flags this.
Also, over half the study participants were also taking an anti depressant. Anti depressants worsen RLS.
For RLS patients like you, Buprenorphine would cover your RLS once you're completely off Pramipexole.
P.S I'm on 0.4mg of Buprenorphine pills and have zero RLS day or night. In the USA, you can only get 2mg pills, so they're difficult to cut into quarters. That's why buccal film 2mg is more popular. It's easier to cut the film into quarters.
Here in the UK and Europe, we can get at least 20 different brands of Buprenorphine pills, starting at 0.2mg.
Great explanation Jools. That is also what I know from reading quite a few scientific papers on buprenorpbine, that is indeed mainly studied for its use to help people with herion addiction and similar.
Low dose buprenorohine doesn’t work very well for me - it’s great that a number of people have had their rls symptoms cleared up on buprenorphine however that is not the case for everyone.
I take 0.8 mg of bup and 125 mg pregabalin - at the moment I wake up about every 90 mins sometimes 2hours sometimes 30 mins. One of my legs will be kicking or have rls sensations so I get up take my next dose and walk around until it stops and then go back to bed.
Without the bup it would be worse and my sleep deprivation would be unbearable so I am grateful for that - but it has not cleared up the rls and plmd.
I recently lowered my pregabalin dose to 100 and increased my bup dose to 1-1.2 mg but I had severe panic, palpitations and difficulties swallowing. It was the last one that I couldn’t cope with so I went back to my original dose.
I’m just sharing this so others dont get a false view that bup works wonders for everyone - it might do but it might not. I’m hopeful of finding a different combination in the future that works better but at the moment I’m staying with the same regime since changing doses seems to upset things more in the short term. We are all different and it’s definitely not a one size fits all situation.
I'm new here, so no expert. But your dosage on both Pregabalin and Buprenorphine looks to be on the low end of what people are taking. I see from your prior posts that you were on 300mg Pregabalin a year ago. What made you cut down from that and how did that effect you?
Hi, 300 pregabalin affected my balance and I put on an extra stone of weight almost over night pushing my bmi to just over 30 - that has proved to be disastrous for me because I then fell over and broke my foot and having extra weight that I really need to get off has restricted my regaining my mobility and definitely made my rls worse.
Buprenorphine is really powerful - lots of people only need 0.4 or 0.6 mg sublingually to stop their rls - I think for me the side effects of even 0.8 are restrictive so I am not able to take a higher dose which may well stop the rls. Plus the doctors / consultants dont like giving a higher dose than about 0.6 - not for rls anyway - at the end of the day it is still an opioid albeit a less problematic one.
I have tried so many things, pharmaceutical and non- pharmaceutical and nothing has helped significantly so at the moment I’m just accepting that this is my life at the moment and I deal with it the best I can. I had to stop working so I sleep when I can and aim to do at least one thing a day so I have a semblance of a normal life - it’s not great but it could be worse. I am ever hopeful that something new will help and slowly battling to regain my fitness and loose the excess weight.
So sorry about your struggles. I assume you saw today's post about garlic/ginger/honey elixer? Sounds too good to be true, so it probably is (except for a few lucky ones perhaps). Have you tried combining pregabalin with a DA (pramipexole)? DAs seem generally like something to avoid (I'm trying to transition off mine), but it sounds like that works for some with refractory RLS (Sue's Mayo article).
Yes I will be trying the garlic / ginger / honey tonight - anything that lowers inflammation seems to help. I was on roprinirole for a while and started augmenting so I definitely wouldn’t go back on another DA.
I hope you are successful in coming off of your DA and that the combination works for you. Please keep us posted -
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