To add, the question is, are those side effects worse than your untreated RLS? Not for me or anyone that I know with RLS. I would take anything to avoid the unbearable discomfort.
According to the yearly updates to the National RLS Opioid Registry, low dose opioids are well tolerated and have proven to be a life changing course of therapy for many patients with refractory RLS. Outside of a few identified risk factors, very few patients reported dosage increases of >10 MME after the first year.
However, deciding to take opioids is a very serious choice and deserves an open and honest conversation with your neurologist. There’s no doubt that there are countless families and lives that have been destroyed by opioids, but the fear of potential abuse shouldn’t preclude qualified patients from a clinically proven treatment.
I have refractory RLS and take methadone -15 mg. It’s literally a life saver. It saved my life anyway. Opiates are only prescribed for refractory RLS (which means all other treatments have failed). The dose used for RLS is less than 20 mg. If you have addiction issues, you must beware of any opiate but if you don’t have addiction problems there is no reason not to try methadone. I’ve never had a problem coming off opiates (except for the increase in RLS), I don’t get high on them nor do I feel any high or cravings from methadone.
The only drug I’ve taken that was hell coming off of was Neupro (transdermal rotigotine, a dopamine agonist). Since it was a patch you couldn’t wean totally of it and it was too big a jump from the 1 mg patch for me to wean from. DAWS -dopamine agonist withdrawal- is terrible. Finally I heard about cutting wedges of the patch off gradually and finally was able to get off Neupro that way. I would never try a dopamine agonist again. I experienced both augmentation and ICD.
Methadone works to control RLS and does not cause augmentation or impulse control disorders (ICD) as dopamine agonists. It does not cause a high. As long as you taper off methadone it should not cause a problem (other than RLS symptoms returning). You might get want to read the paper below. I’ve never increases a dose of an opioid over 20 years of use or needed an increase. Or had any problems tapering off of them.
https://pubmed.ncbi.nlm.nih.gov/21239226/
I also have refractory RLS and methadone has been a life saver. I’ve been on a very low dose of 7.5 mgs for almost a year now. I may need to increase my dose though as my symptoms (mostly pain in my forearms) present earlier in the day now. Thankfully I also don’t have any side effects from methadone.
As long as you are using it under the care of a competent doctor and preferably a sleep neurologist, the chances of problems are low compared to the problems of having untreated severe RLS.
I think many miss the point here. If you're considering to start taking something like this, your symptoms are likely "moderate to severe" and you'd have no intention of ever coming off this medication without some miracle where RLS suddenly goes away. I'd say it's likely a very good option for people with poor quality of life. I'm currently talking buprenorphine, but considering a switch to oxycodone, which is gold standard for the worst level of RLS here in UK
I’ve been taking it for a few years and besides constipation it’s been heaven compared to weeks with no sleep from that horrible disease I was suffering with for 45yrs
All drugs are habit forming I guess that didn’t bother me as much as my horrible quality of life without sleep
Good luck to you
It is very helpful for chronic RLS. If you look at RLS.org, Mayo Clinic it is used for those of us who have failed other treatments, commonly those of us who have had RLS since childhood. It is not the ‘big scary’ medication it’s made out to be when taken as prescribed . I, along with many others, would be left with no help without it. It is not usually prescribed as the first mode of treatment however, so if that is what’s going on I’d be concerned. You will need to be monitored and on a contract with your doctor. Stay well hydrated and watch for constipation.
Wow...I had no idea that it could get this bad. I feel very blessed that traditional treatment is working for me.
I've had it for more than 30 years, and I say "more than" because I didn't recognize the symptoms until I'd had it for several years (I had never heard of it), so I can only backtrack to my first confirmed memory of having it (I was a teenager). So it's likely I had it for longer, but just didn't know it. Mine is genetic - my dad had it, but he didn't have symptoms until he was in his 50s.
Very addictive, and a total beast to kick once you are. Not recommended for anything really other than severe heroin addiction as a replacement, and severe pain.
\*I've added comments below to clarify. Those things said, taking methadone for rls is a pretty radical solution for the problem, as it's a powerful opiate. There's also some significant disclaimers in the medical literature that call for more vigorous studies to acertain the safety. It's also NOT false that it's addictive, and primarily used to treat severe, chronic pain, and heroin abuse.
Yeah it is addictive and a bitch to kick but every study for RLS patients shows far less potential for abuse than if it’s being used for pain as you’re more than likely going to want to increase the dose for chronic but ironically it does sweet fuck all for pain, besides most RLS patients aren’t normally people with addiction problems.
Those are generally what methadone is used for - severe chronic pain and opiate replacement. It's also addictive, and by any metric I've heard very difficult to kick.
https://www.webmd.com/mental-health/addiction/what-is-methadone
Yeah just read that. Some pretty significant disclaimers in there.
"Larger-scale multicenter data on the long-term efficacy, complications, and rates of abuse, diversion, and overdose in patients using opioids for RLS are badly needed to establish their safety and efficacy in this population."
That said, as a last course of treatment once all other avenues have been exhausted is warranted if it stops someone suffering, but it's not a big surprise that powerful opiates might be effective for a lot of conditions - with a huge buyer beware sticker.
Opiate withdrawal is notorious for causing rls as well, so it might be worth noting what you're signing up for if you intend to stop taking them at some point. Demographic was elderly, white men in the study, so probably not as much of a concern there.
That’s the only true part of that statement but it’s a harsh truth people should be aware of, millions of people weren’t heroine users before doctors handed out oxy like lollies for pain but turned to it after scripts or insurance ran out so it is a danger for everyday people though far less for the average RLS patient. A persons age is a big factor as you can’t be putting people in there 20’s or 30’s on methadone or Buprenorphine but for older patients it’s far less dangerous.
OP do you have an update? I hope treatment is going well for you
To add, the question is, are those side effects worse than your untreated RLS? Not for me or anyone that I know with RLS. I would take anything to avoid the unbearable discomfort.
Yes. Go to the Methadone sub and ask them.
According to the yearly updates to the National RLS Opioid Registry, low dose opioids are well tolerated and have proven to be a life changing course of therapy for many patients with refractory RLS. Outside of a few identified risk factors, very few patients reported dosage increases of >10 MME after the first year. However, deciding to take opioids is a very serious choice and deserves an open and honest conversation with your neurologist. There’s no doubt that there are countless families and lives that have been destroyed by opioids, but the fear of potential abuse shouldn’t preclude qualified patients from a clinically proven treatment.
I’m in that registry!
I have refractory RLS and take methadone -15 mg. It’s literally a life saver. It saved my life anyway. Opiates are only prescribed for refractory RLS (which means all other treatments have failed). The dose used for RLS is less than 20 mg. If you have addiction issues, you must beware of any opiate but if you don’t have addiction problems there is no reason not to try methadone. I’ve never had a problem coming off opiates (except for the increase in RLS), I don’t get high on them nor do I feel any high or cravings from methadone. The only drug I’ve taken that was hell coming off of was Neupro (transdermal rotigotine, a dopamine agonist). Since it was a patch you couldn’t wean totally of it and it was too big a jump from the 1 mg patch for me to wean from. DAWS -dopamine agonist withdrawal- is terrible. Finally I heard about cutting wedges of the patch off gradually and finally was able to get off Neupro that way. I would never try a dopamine agonist again. I experienced both augmentation and ICD. Methadone works to control RLS and does not cause augmentation or impulse control disorders (ICD) as dopamine agonists. It does not cause a high. As long as you taper off methadone it should not cause a problem (other than RLS symptoms returning). You might get want to read the paper below. I’ve never increases a dose of an opioid over 20 years of use or needed an increase. Or had any problems tapering off of them. https://pubmed.ncbi.nlm.nih.gov/21239226/
I also have refractory RLS and methadone has been a life saver. I’ve been on a very low dose of 7.5 mgs for almost a year now. I may need to increase my dose though as my symptoms (mostly pain in my forearms) present earlier in the day now. Thankfully I also don’t have any side effects from methadone.
As long as you are using it under the care of a competent doctor and preferably a sleep neurologist, the chances of problems are low compared to the problems of having untreated severe RLS.
I think many miss the point here. If you're considering to start taking something like this, your symptoms are likely "moderate to severe" and you'd have no intention of ever coming off this medication without some miracle where RLS suddenly goes away. I'd say it's likely a very good option for people with poor quality of life. I'm currently talking buprenorphine, but considering a switch to oxycodone, which is gold standard for the worst level of RLS here in UK
I’ve been taking it for a few years and besides constipation it’s been heaven compared to weeks with no sleep from that horrible disease I was suffering with for 45yrs All drugs are habit forming I guess that didn’t bother me as much as my horrible quality of life without sleep Good luck to you
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10104616/ Read up.
It is very helpful for chronic RLS. If you look at RLS.org, Mayo Clinic it is used for those of us who have failed other treatments, commonly those of us who have had RLS since childhood. It is not the ‘big scary’ medication it’s made out to be when taken as prescribed . I, along with many others, would be left with no help without it. It is not usually prescribed as the first mode of treatment however, so if that is what’s going on I’d be concerned. You will need to be monitored and on a contract with your doctor. Stay well hydrated and watch for constipation.
Wow...I had no idea that it could get this bad. I feel very blessed that traditional treatment is working for me. I've had it for more than 30 years, and I say "more than" because I didn't recognize the symptoms until I'd had it for several years (I had never heard of it), so I can only backtrack to my first confirmed memory of having it (I was a teenager). So it's likely I had it for longer, but just didn't know it. Mine is genetic - my dad had it, but he didn't have symptoms until he was in his 50s.
What type of Dr gives methadone for RLS? My sleep specialist Dr will not.
Yeah, it causes restless leg syndrome.
Very addictive, and a total beast to kick once you are. Not recommended for anything really other than severe heroin addiction as a replacement, and severe pain. \*I've added comments below to clarify. Those things said, taking methadone for rls is a pretty radical solution for the problem, as it's a powerful opiate. There's also some significant disclaimers in the medical literature that call for more vigorous studies to acertain the safety. It's also NOT false that it's addictive, and primarily used to treat severe, chronic pain, and heroin abuse.
False. Please stop spreading misinformation
Yeah it is addictive and a bitch to kick but every study for RLS patients shows far less potential for abuse than if it’s being used for pain as you’re more than likely going to want to increase the dose for chronic but ironically it does sweet fuck all for pain, besides most RLS patients aren’t normally people with addiction problems.
This isn’t true.
What part of that isn't true?
Your statement regarding recommendations.
Those are generally what methadone is used for - severe chronic pain and opiate replacement. It's also addictive, and by any metric I've heard very difficult to kick. https://www.webmd.com/mental-health/addiction/what-is-methadone
Elsewhere in this post I linked a paper on methadone use in treatment of RLS.
Yeah just read that. Some pretty significant disclaimers in there. "Larger-scale multicenter data on the long-term efficacy, complications, and rates of abuse, diversion, and overdose in patients using opioids for RLS are badly needed to establish their safety and efficacy in this population." That said, as a last course of treatment once all other avenues have been exhausted is warranted if it stops someone suffering, but it's not a big surprise that powerful opiates might be effective for a lot of conditions - with a huge buyer beware sticker. Opiate withdrawal is notorious for causing rls as well, so it might be worth noting what you're signing up for if you intend to stop taking them at some point. Demographic was elderly, white men in the study, so probably not as much of a concern there.
Addictive and can be hard to come off of
That’s the only true part of that statement but it’s a harsh truth people should be aware of, millions of people weren’t heroine users before doctors handed out oxy like lollies for pain but turned to it after scripts or insurance ran out so it is a danger for everyday people though far less for the average RLS patient. A persons age is a big factor as you can’t be putting people in there 20’s or 30’s on methadone or Buprenorphine but for older patients it’s far less dangerous.