I've been on Methadone for 4 years. I take 10 mg a day and have never needed or even felt the need to take more. I take it. It stops my RLS period. I was on Gabapentin and it almost killed me from the side effects.
Extensive use of low-dose methadone and other opioids for several decades and now multiple studies show that low-dose opioids for RLS are safe, effective, and stable in the long term. Here is the latest from National RLS Opioid Registry: www.neurology.org/doi/10.1212/WNL.0000000000206855
God bless you for your work Dr. Many of us suffering from severe RLS have consider ending it all specially after fail tx or worse augmentation from Requip and mirapex. Resting and relaxing seams imposible no matter how tired and exhausted. You give me hope Waiting anxiously for my appointment.
All RLS patients should have hope for having the condition under control. Even if a clinician just follows the more recent guidelines, their condition should be manageable. This recently published study demonstrates that simply following the recent guidelines is effective, even in the most severe and augmented patients: Laiwah JY, Winkelman JW. How effective are treatment guidelines for augmented RLS? Sleep. 2022;45(7). doi:10.1093/sleep/zsac108
Thanks for sharing. Restless legs symptoms can occur with opioid withdrawal, even in those who do not normally have RLS. The connections of the opioid system and RLS are numerous and we are only scratching the surface as to understanding the relationship.
Thank you as my husband and I have tried to find a solution. Not getting sleep is truly detrimental to daily life. Have tried Magnesium, potassium citrate, B 1, etc….This sounds like a safer option. Thank you for sharing!!!
Be careful, it’s very hard to stop using. And once addicted, it causes more severe RLS for longer periods. I’m going through it right now. Wish I never took it, I’d rather just use iron, mag., potassium supplements
Buprenorphine is not for regular restless legs syndrome and would not be for the vast majority of those with this condition. It is for the most severe cases, usually those with severe RLS from augmentation from dopamine agonist medications. Opioids are typically only used in severe cases when first-line agents (iron supplements or IV iron and alpha-2-delta ligand medications like gabapentin or Lyrica or Horizant) have not been effective.
@@andyberkowskimd So what I'm hearing is that I need to take medicine to make my condition worse so I can take other medicine to make it better 😂. I'm curious what is considered severe? I was prescribed ropinirole, and then gabapentin. I now take them together (I need to clear this with my dr. but it works better then either independently), but I'm still trying to find the right combination. Right now I take .5mg ropinirole and 400 mg gabapentin around 7pm. When I wake up from sleep during the night, I take .25 mg ropinirole and 200 mg gabapentin, and if I wake up again, then just 200 mg gabapentin. I've done this for two nights in a row, and so far so good. But frankly, every time I change up the regimen, the symptoms improve, and then get worse again. Now I feel symptoms during the day when before it was only at night. Is Buprenorphine taken indefinitely? Does the dosage increase over time? At some point I will probably want to look into this with my doctor.
I apologise for my earlier post, as I have in my comment on Dr Andy's other vid on opioids in RLS. I should have made it clear on both occasions that my remarks apply to situations where there is inadequate prescibing and monitoring diligence. Regret that this is often the case outside centres of excellence. RLS is very often cared for here by non-expert general practitioners. The same issue applies with benzodiazepines (usually clonazepam in the UK). Their contribution is valuable provided the prescribing and monitoring practices are adequate. Otherwise, there are risks. In my latter years working in substance misuse the profile of patients changed radically towards abuse of prescribed opioids and benzos, rather than illicit so-called 'recreational' drugs.
This is correct. The first thing a doctor should do after making the correct diagnosis is to assess iron levels. The majority of healthcare providers are not aware of this currently. A person with RLS can make other lifestyle changes prior to seeking medical attention including good sleep hygiene, a consistent sleep schedule particularly wake up time, not smoking, reducing alcohol consumption, avoiding sleeping pills, at least moderate exercise during the day, eating an iron-rich diet, reducing processed carbohydrate and sugar intake, losing weight--many of the ways to prevent a lot of other medical conditions!
This is insane. Take no notice unless you have RLS which is so severe that you cannot function AT ALL. The RX of opiods and theiur synthetic analogs for RLS is a recipe for disaster as they are addictive. I mean this in the precise sense that they give rise to habituation, which leads to the need to increase the does to achieve the same effect, which in turn leads to dependence. I have moderate to severe RLS and would not dream of taking this treatment. I spent 30 years working in the field of substance misuse. Good luck to all of you with RLS.
Opioids are a consensus second-line treatment for moderate to severe RLS. When prescribed, the benefits should outweigh the risks. Opioids have been shown to be safe and effective in very low doses for those with RLS and work differently than in other conditions. This publication sets out guidelines for safe and appropriate opioid prescribing in this condition: Silber MH, Becker PM, Buchfuhrer MJ, et al. The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome. Mayo Clin Proc. 2018;93(1):59-67. doi:10.1016/j.mayocp.2017.11.007 Buprenorphine further reduces the risks and adverse effects beyond standard opioids and may be just as effective. academic.oup.com/sleep/article/46/Supplement_1/A307/7182410
You are dead ass wrong. I have been on 20 mg of methadone for 4 years, I have never had an inkling of a feeling of addiction, needing more, etc. Opiods are a lifesaver for many of us.
Yes, this is why I say severe RLS and state that the issue is one of habituation over time. I regret that I was imprecise in my first comment. Addiction to the extent that it interferes with activities is rare where opioids are prescribed therapuetically and with proper medical superivison. I think I have commented in another post that the difficulty is that that level of supervision and accuracy of prescription is often lacking outside specialist centres (at least here in the UK). This is also the reason medical practitioners are reluctatnt to prescribe opioids over here. I also agree with @Bibs123 that opioids are an important contribution where other treatments have failed @@andyberkowskimd
Why would you say this is insane .I’m sorry unless you have really sufferedI suffer every single night and tried every single possible imaginable, remedy, infusion , 3:18 pill, everything Reiki, acupuncture, acupressure, think better eat diet diary, howling at the Moon you’re gonna try one more thing why not don’t tell me it’s insane but I think it’s insane is being in pain having something out there that can help us and not being able to get it. Good luck to you.. and thank you Dr
It is ideal to taper off dopamine agonists and go through the withdrawal process naturally, but most cannot tolerate this so often another treatment must be started before the drug can be tapered off.
I've been on Methadone for 4 years. I take 10 mg a day and have never needed or even felt the need to take more. I take it. It stops my RLS period. I was on Gabapentin and it almost killed me from the side effects.
Extensive use of low-dose methadone and other opioids for several decades and now multiple studies show that low-dose opioids for RLS are safe, effective, and stable in the long term. Here is the latest from National RLS Opioid Registry:
www.neurology.org/doi/10.1212/WNL.0000000000206855
God bless you for your work Dr.
Many of us suffering from severe RLS have consider ending it all specially after fail tx or worse augmentation from Requip and mirapex.
Resting and relaxing seams imposible no matter how tired and exhausted.
You give me hope
Waiting anxiously for my appointment.
All RLS patients should have hope for having the condition under control. Even if a clinician just follows the more recent guidelines, their condition should be manageable. This recently published study demonstrates that simply following the recent guidelines is effective, even in the most severe and augmented patients:
Laiwah JY, Winkelman JW. How effective are treatment guidelines for augmented RLS? Sleep. 2022;45(7). doi:10.1093/sleep/zsac108
Seems like it causes mine to get worse, I have had RLS since I was a little kid
I’m detoxing from suboxone the restless legs and arms are the worst part I can’t sleep
Thanks for sharing. Restless legs symptoms can occur with opioid withdrawal, even in those who do not normally have RLS. The connections of the opioid system and RLS are numerous and we are only scratching the surface as to understanding the relationship.
Try taking some subutex lol it's the fuvk8ng worse mate this geezer is taking bollcocks don't do it have a wank instead
Thank you as my husband and I have tried to find a solution. Not getting sleep is truly detrimental to daily life. Have tried Magnesium, potassium citrate, B 1, etc….This sounds like a safer option. Thank you for sharing!!!
Be careful, it’s very hard to stop using. And once addicted, it causes more severe RLS for longer periods. I’m going through it right now. Wish I never took it, I’d rather just use iron, mag., potassium supplements
@@afili8ed thank you for sharing! Then I definitely won’t consider this option.
Buprenorphine is not for regular restless legs syndrome and would not be for the vast majority of those with this condition. It is for the most severe cases, usually those with severe RLS from augmentation from dopamine agonist medications. Opioids are typically only used in severe cases when first-line agents (iron supplements or IV iron and alpha-2-delta ligand medications like gabapentin or Lyrica or Horizant) have not been effective.
@@andyberkowskimd thank you for all of the guidance. Will not pursue this Avenue of treatment.
@@andyberkowskimd So what I'm hearing is that I need to take medicine to make my condition worse so I can take other medicine to make it better 😂. I'm curious what is considered severe? I was prescribed ropinirole, and then gabapentin. I now take them together (I need to clear this with my dr. but it works better then either independently), but I'm still trying to find the right combination. Right now I take .5mg ropinirole and 400 mg gabapentin around 7pm. When I wake up from sleep during the night, I take .25 mg ropinirole and 200 mg gabapentin, and if I wake up again, then just 200 mg gabapentin. I've done this for two nights in a row, and so far so good. But frankly, every time I change up the regimen, the symptoms improve, and then get worse again. Now I feel symptoms during the day when before it was only at night. Is Buprenorphine taken indefinitely? Does the dosage increase over time? At some point I will probably want to look into this with my doctor.
I apologise for my earlier post, as I have in my comment on Dr Andy's other vid on opioids in RLS. I should have made it clear on both occasions that my remarks apply to situations where there is inadequate prescibing and monitoring diligence. Regret that this is often the case outside centres of excellence. RLS is very often cared for here by non-expert general practitioners. The same issue applies with benzodiazepines (usually clonazepam in the UK). Their contribution is valuable provided the prescribing and monitoring practices are adequate. Otherwise, there are risks. In my latter years working in substance misuse the profile of patients changed radically towards abuse of prescribed opioids and benzos, rather than illicit so-called 'recreational' drugs.
Actually, the first thing you do for RLS is determine the patient's iron status, per Johns Hopkins, Mayo, etc.
This is correct. The first thing a doctor should do after making the correct diagnosis is to assess iron levels. The majority of healthcare providers are not aware of this currently. A person with RLS can make other lifestyle changes prior to seeking medical attention including good sleep hygiene, a consistent sleep schedule particularly wake up time, not smoking, reducing alcohol consumption, avoiding sleeping pills, at least moderate exercise during the day, eating an iron-rich diet, reducing processed carbohydrate and sugar intake, losing weight--many of the ways to prevent a lot of other medical conditions!
This is insane. Take no notice unless you have RLS which is so severe that you cannot function AT ALL. The RX of opiods and theiur synthetic analogs for RLS is a recipe for disaster as they are addictive. I mean this in the precise sense that they give rise to habituation, which leads to the need to increase the does to achieve the same effect, which in turn leads to dependence. I have moderate to severe RLS and would not dream of taking this treatment. I spent 30 years working in the field of substance misuse. Good luck to all of you with RLS.
Opioids are a consensus second-line treatment for moderate to severe RLS. When prescribed, the benefits should outweigh the risks. Opioids have been shown to be safe and effective in very low doses for those with RLS and work differently than in other conditions. This publication sets out guidelines for safe and appropriate opioid prescribing in this condition:
Silber MH, Becker PM, Buchfuhrer MJ, et al. The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome. Mayo Clin Proc. 2018;93(1):59-67. doi:10.1016/j.mayocp.2017.11.007
Buprenorphine further reduces the risks and adverse effects beyond standard opioids and may be just as effective.
academic.oup.com/sleep/article/46/Supplement_1/A307/7182410
You are dead ass wrong. I have been on 20 mg of methadone for 4 years, I have never had an inkling of a feeling of addiction, needing more, etc. Opiods are a lifesaver for many of us.
Yes, this is why I say severe RLS and state that the issue is one of habituation over time. I regret that I was imprecise in my first comment. Addiction to the extent that it interferes with activities is rare where opioids are prescribed therapuetically and with proper medical superivison. I think I have commented in another post that the difficulty is that that level of supervision and accuracy of prescription is often lacking outside specialist centres (at least here in the UK). This is also the reason medical practitioners are reluctatnt to prescribe opioids over here. I also agree with @Bibs123 that opioids are an important contribution where other treatments have failed @@andyberkowskimd
Why would you say this is insane .I’m sorry unless you have really sufferedI suffer every single night and tried every single possible imaginable, remedy, infusion , 3:18 pill, everything Reiki, acupuncture, acupressure, think better eat diet diary, howling at the Moon you’re gonna try one more thing why not don’t tell me it’s insane but I think it’s insane is being in pain having something out there that can help us and not being able to get it. Good luck to you.. and thank you Dr
My doctors tell me that I have side-effects from primopexol. But they told me that i have to stop taking it without giving me anything else.
It is ideal to taper off dopamine agonists and go through the withdrawal process naturally, but most cannot tolerate this so often another treatment must be started before the drug can be tapered off.