Hi all,
I just want to share with you the following abstract on research for refractory RLS.
Corrie
Methadone for refractory restless legs syndrome.
Ondo WG.
Baylor College of Medicine, Houston Texas, USA.
Most cases of restless legs syndrome (RLS) initially respond well to dopaminergic agonists. However, an unknown percentage of patients is intolerant of dopaminergic adverse events, initially or subsequently refractory, or develops limiting augmentation. We administered methadone 5 to 40 mg/day (final dose, 15.6 +/- 7.7) to 29 RLS patients who failed dopaminergics. They were currently taking or had previously tried 5.9 +/- 1.7 (range, 3-9) different medications for RLS and 2.9 +/- 0.8 (range, 2-4) different dopaminergics. Of the 27 patients who met inclusion criteria, 17 have remained on methadone for 23 +/- 12 months (range, 4-44 months) at a dose of 15.5 +/- 7.7 mg/day; 2 dialysis RLS patients died while on methadone, and 8 stopped the treatment (5 for adverse events, 2 for lack of efficacy, and 1 for logistical reasons). All patients who remain on methadone report at least a 75% reduction in symptoms, and none have developed augmentation. Methadone should be considered in RLS patients with an unsatisfactory dopaminergic response. (c) 2004 Movement Disorder Society.
new research methadon for refractory RLS
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cornelia
methadon
Hi Mary Rose,
No, I haven't tried methadon yet. It is on top of my list for my appointment with with the neuro in January. I have refractory RLS. The DA's don't work anymore and take away my energy. Tramadol has been very helpful and gave me energy, but it doesn't work properly anymore.
I too am scared of side effects, will it work, will I have to up the dosage quickly etc. But what can you do when all other meds fail?
If you want to know if your husband has refrctory RLS go to:
I have restless legs, click on Announcements and click on the link to Algorithm for RLS.
I wish your husband the best (and you too). This is a horrible disorder.
Corrie
No, I haven't tried methadon yet. It is on top of my list for my appointment with with the neuro in January. I have refractory RLS. The DA's don't work anymore and take away my energy. Tramadol has been very helpful and gave me energy, but it doesn't work properly anymore.
I too am scared of side effects, will it work, will I have to up the dosage quickly etc. But what can you do when all other meds fail?
If you want to know if your husband has refrctory RLS go to:
I have restless legs, click on Announcements and click on the link to Algorithm for RLS.
I wish your husband the best (and you too). This is a horrible disorder.
Corrie
Hi
Just a comment.........
I haven't researched the side effects of prolonged use of Methadone. I know it was told to me that it is one the best researched drugs. It's safety and overall effects are good for a great many people. I was offered this drug this year, but opted not to take it yet. Corrie I love to know what you have found in your research about Methadone.
I would like to say that Dr. Ono is one of my RLS heros......his research into this disorder is superb.
My hope is to meet him someday, silly I know, but true. When I was self diagnosing and trying to figure out what all the doctors were missing......it was a research paper of Dr. Ono's that talked about "growing pains" that gave me my first clue. Late one night, all alone in the dark with the computer, he this man identified something in me no one had before. I cried with relief and joy. It had a name and someone was working on it.
Sappy, but o so true.
I haven't researched the side effects of prolonged use of Methadone. I know it was told to me that it is one the best researched drugs. It's safety and overall effects are good for a great many people. I was offered this drug this year, but opted not to take it yet. Corrie I love to know what you have found in your research about Methadone.
I would like to say that Dr. Ono is one of my RLS heros......his research into this disorder is superb.
My hope is to meet him someday, silly I know, but true. When I was self diagnosing and trying to figure out what all the doctors were missing......it was a research paper of Dr. Ono's that talked about "growing pains" that gave me my first clue. Late one night, all alone in the dark with the computer, he this man identified something in me no one had before. I cried with relief and joy. It had a name and someone was working on it.
Sappy, but o so true.
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cornelia
methadon
You are welcome, Becat, maybe one day we will use it for our RLS. Strange that my neuro has the opinion that you have to up the dose soon and that it will not last long. But even when it will only last 6 months and it works, I would be very pleased. As the DA's make me so impossibly tired it would be a good idea to switch every 6 months or so, I should think.
Today is the 5th anniversary of the Dutch RLS patients Group. My hus band went early this morning to be there for the day. Several neuro's will be there, one of them, a woman, is the first in The Netherlands that has taken her degree on RLS. And I, the poor patient, has to stay at home. Agonising!
Have a nice weekend
Corrie
Today is the 5th anniversary of the Dutch RLS patients Group. My hus band went early this morning to be there for the day. Several neuro's will be there, one of them, a woman, is the first in The Netherlands that has taken her degree on RLS. And I, the poor patient, has to stay at home. Agonising!
Have a nice weekend
Corrie
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mrafirst
Thanks for the info Cornelia
Hi, Cornelia,
I really appreciated the information from you. I will share it with my husband. Yes, according to the definition, he does have refractory RLS. It is hard because he has heart problems, too, and it seems that some of the meds for those problems make the RLS worse.
I will be interested to learn what your Neuro doc says when you see him. My spouse sees a neuro here also. It's about 1.5 hr. drive to a university hospital, but it is the best treatment he has gotten so far. BTW, he still has managed to travel internationally and to work despite this, so I'm very proud of him. He's my hero!
Mary Rose
I really appreciated the information from you. I will share it with my husband. Yes, according to the definition, he does have refractory RLS. It is hard because he has heart problems, too, and it seems that some of the meds for those problems make the RLS worse.
I will be interested to learn what your Neuro doc says when you see him. My spouse sees a neuro here also. It's about 1.5 hr. drive to a university hospital, but it is the best treatment he has gotten so far. BTW, he still has managed to travel internationally and to work despite this, so I'm very proud of him. He's my hero!
Mary Rose
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cornelia
methadon
Of course I will keep you informed, Mary Rose and I am glad that your husband still manages to hold his job. I lost mine 1 1/2 years ago because of RLS, but I think that meds play a part in this. As I have mentioned before, I think, the DA's make me impossibly tired and maybe things will get better with narcotics.
Bye for now
Corrie
Bye for now
Corrie
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Kimscott
Please be carful with Methadone
I am new here so forgive me if I speak out of turn. I am here because I suffer from RLS....but when I saw the Methadone heading I felt panic set in. The last two years my family has been visited by the demon heroin. My nephew lost his life to an overdose in February and my son Max, 27, was treated for his addiction. He has been clean one year, 3 months. 16 days....I have learned more than I ever wanted to know about narcotics, and Methadone is something I learned much about...it is highly addictive and very very difficult to detox from. I know that people are on it for years but if you don't have your dose, you have horrific withdrawl's. They said in the rehab that methadone was harder to withdrawl from then heroin....many people who were on methadone to get off heroin, went back to heroin before entering treatment because it was easier to get off of....PLEASE, PLEASE, PLEASE.....check it out throughly before you make that decision....Just my thougths......
Hi Kim
Hi Kim and welcome to the board.
Thank you for your post. It's a good reminder to us all that the treatment we seek is to improve Quality of Life, we must research our treatments like we have RLS.
Kim what you'll find here are people that with the proper treatment can lead a successful life. So many different levels of suffering, symptoms, and treatments build our stories. There may come a day when Methadone is something I may have to try, Thank God it's not right now. But I leave my options open. Not all of us use medications, not all of us use pain or sleep medications. Each one of us is so different under the same RLS banner. Trust me, there's many different combinations of symptoms and treatments.
Until this Sept. (2004) I did not think I would live another 5 years. Sleep deprivation was slowly allowing my body and mind to eat itself. I'm 40, and honestly did not think I'd see 45. I spent two years trying the medications the doctor wanted me to. It was mind boggling to think what I lived through on a daily basis, all the time trying to hold a family/home/life together. Darn near impossible. I have lived in extreme pain for 9-10 years now. A bad RLS attack leaves me crippled and unable to walk fast enough to keep up with my 88 yr. old grandmother. I am currently on a 1/4 to 1/2 Percodan in the evenings. It's not a pretty medication, highly addictive. Kim, I have quality of life for the first time in many, many years. I have hope that 5 years is a drop in the bucket, maybe I'll go for 88, maybe 90. Who knows. I have goals and dreams again. It's been a miracle for my family and my friends to have Me again. If I were using it to get high, then I should be shamed or worse, but it's not that. It's come down to my Quality of Life. I have some now, it's great, too.
I don't think there is a one of us that would rather not live without medication. But I can't choose what works for someone else, just me. Your opinion and story counts, I hope you know that. I'm glad your here. We have alot to learn about living with RLS and everyone counts. The fact that your First post was about warning us all, and helping us all.........simple shows that your our kind of gal.
We're so sorry that you have RLS and needed to find us........but we're so glad your here now. I look forward to getting to know you better.
Thank you for your post. It's a good reminder to us all that the treatment we seek is to improve Quality of Life, we must research our treatments like we have RLS.
Kim what you'll find here are people that with the proper treatment can lead a successful life. So many different levels of suffering, symptoms, and treatments build our stories. There may come a day when Methadone is something I may have to try, Thank God it's not right now. But I leave my options open. Not all of us use medications, not all of us use pain or sleep medications. Each one of us is so different under the same RLS banner. Trust me, there's many different combinations of symptoms and treatments.
Until this Sept. (2004) I did not think I would live another 5 years. Sleep deprivation was slowly allowing my body and mind to eat itself. I'm 40, and honestly did not think I'd see 45. I spent two years trying the medications the doctor wanted me to. It was mind boggling to think what I lived through on a daily basis, all the time trying to hold a family/home/life together. Darn near impossible. I have lived in extreme pain for 9-10 years now. A bad RLS attack leaves me crippled and unable to walk fast enough to keep up with my 88 yr. old grandmother. I am currently on a 1/4 to 1/2 Percodan in the evenings. It's not a pretty medication, highly addictive. Kim, I have quality of life for the first time in many, many years. I have hope that 5 years is a drop in the bucket, maybe I'll go for 88, maybe 90. Who knows. I have goals and dreams again. It's been a miracle for my family and my friends to have Me again. If I were using it to get high, then I should be shamed or worse, but it's not that. It's come down to my Quality of Life. I have some now, it's great, too.
I don't think there is a one of us that would rather not live without medication. But I can't choose what works for someone else, just me. Your opinion and story counts, I hope you know that. I'm glad your here. We have alot to learn about living with RLS and everyone counts. The fact that your First post was about warning us all, and helping us all.........simple shows that your our kind of gal.
We're so sorry that you have RLS and needed to find us........but we're so glad your here now. I look forward to getting to know you better.
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lifejoy
Hi everyone! I am a little confused about methadone as treatment. I understand methadone is long-acting (8-16 hours) and is used often after surgeries and people in around-the-clock pain. The drug is less addictive due to its long duration, but if it is abused it will become addictive quickly..luckily, by the way the drug works, if you do become dependent the effects are much less than if you had been addicted to an opiate such as oxycodone (percocet, oxycontin, etc.) but it will also take longer to become independent; this explains the drugs use for heroin addicts. Methadone is also an anti-antagonist which means that if methadone is mixed with heroin, codeine, ibogaine, or any other antagonist opiate, the 2 drugs will nullify eachother. What confuses me is that methadone (along with darvocet) have a stimulant property. Because of this property, I don't understand how it would help in RLS except with the pain. If I am wrong with any of what I have said PLEASE post and correct me, but I am pretty confident. Hope I helped 
take it easy and God bless
take it easy and God blessHi, all:
I just found this thread and am chomping at the bit to reply in detail, even though I am not an expert on narcotics. One thing I know that different people (with various personalities) react quite differently. Also it is a highly emotional issue. And to top it all, brain biochemistry is a complicated subject (I am studying it now) and one thing is clear already, we do not know nearly enough! 
I hazard a guess: marijuana would probably be close in efficacy to methadone. Since it is criminalized in the US, one cannot run a clinical trial on it. So we do not know. Perhaps someone abroad in the UK? will run a clinical or already did so?
That is too bad as the risks with marijuana would be clearly much less.
I have got to get some sleep. Good post Cornelia and others...!
I hazard a guess: marijuana would probably be close in efficacy to methadone. Since it is criminalized in the US, one cannot run a clinical trial on it. So we do not know. Perhaps someone abroad in the UK? will run a clinical or already did so?
That is too bad as the risks with marijuana would be clearly much less.
I have got to get some sleep. Good post Cornelia and others...!
Last edited by jumpyowl on Wed Jan 05, 2005 6:16 pm, edited 1 time in total.
Jumpy Owl
At the age of 14 not only did I dicover that alcohol relieved my "growing pains" but marijuana helped me sleep way better than the alcohol. I hated the paranoid feelings I got but man did I love the relief from rls and being able to sleep again for hours and hours. At that time in the 60tys it was the happening thing so it was cool to smoke. I know better today, BUT if I wasnt so worried about buying it and getting busted I would. I know it would work alot better than what I am taking now and it only takes a hit or two to get relief. Ya know I have a friend >>>>>>hmmmmmm
Dr. ONdo is the doctor that put me on methadone
hi everyone,
if anyone has read my notes, i wanted to let you know Dr. Ondo is the one Dr. that finally diagnosed me and put me on the methadone, my problem is that i moved and the doctor here that kept me on methadone has left, the replacement doesn't want to fill my meds. I have no symtoms now, I take my meds as prescibed and I fine, But the replacement dr. even asked me if i could call my old dr. but there is no way i can travel to houston,
I feel like I am headed for a major dead end in my life if I can't get a doctor to believe me and just let me continue my treatment,
He is great, thanks for posting that info, i am going to take a copy to this new doctor, not that she cares,
Wish me luck, I could go on all day about how scared i am, but i will see what happens, I know one thing, Dr. Ondo sure did believe me and even called me about six months ago to see if i was still taking methadone and how it was going, I guess maybe he could have a way to help, I am in another state now but it doesn't hurt to call
Good luck to you all
OOOO Dr. ONO
Well, KJ........
I have to tell you that Dr. William Ono is my personal RLS HERO.
It was two yrs., into reading medical journals and project papers published online in every medical library I could access online or in person.
My breakthough came one night while reading a study done by Dr. Ono and another doctor, Dr. Ono said the magic words......"growing pains". I sat by myself, at around two oclock in the morning, crying, IT HAD A NAME. With one sentence from Dr. Ono all that I had been reading for that past two years made sense.......it was like of flood of relief.
Little did I know how difficult it would yet be to find and establish a treatment. I have yet to meet him, but one day I will. I hope I will be able to speak at that time, he freed a part of me with his work.
At the time, like you, he was simple not easily reached for treatment, the miles to far to try. So I found a fellow that Dr. Ono had worked with and he was close enough to see regularly.
I did the Mirapex route, only to have it raised over and over again. Still leaving me in horrible pain and sleepless. I tried the most of the other stuff, but always resisted the pain medications. I was able to use sleep medications when we traveled, which we did often around the early stages of RLS treatment. The end of the Mirapex story is in this thread (pharm) called My RLS Mountain.
http://rls.org/phpBB2/viewtopic.php?t=293
I can't blame you for not wanting to chance going backwards with your treatment. It's a horrible thought of being back where I was.
I would venture to say that a call or a letter from Dr. Ono maybe at the very least help to explain this to your new doc.. I doubt that any untrained RLS doctor is readily willing to write a script for most pain meds, let alone Methadone. Many docs don't seem to want to hassle with pain meds in any form. It's a shame that in this day and age we are still having to explain the practice of pain management. But here we are.
I'm with ya KJ, get on the phone, write the good Dr. Ono a letter, a fax.....good gosh something.
I'm with ya KJ, let me know how your doing with this. And as always anything I could do to help I will.
Hugs to ya.
I have to tell you that Dr. William Ono is my personal RLS HERO.
It was two yrs., into reading medical journals and project papers published online in every medical library I could access online or in person.
My breakthough came one night while reading a study done by Dr. Ono and another doctor, Dr. Ono said the magic words......"growing pains". I sat by myself, at around two oclock in the morning, crying, IT HAD A NAME. With one sentence from Dr. Ono all that I had been reading for that past two years made sense.......it was like of flood of relief.
Little did I know how difficult it would yet be to find and establish a treatment. I have yet to meet him, but one day I will. I hope I will be able to speak at that time, he freed a part of me with his work.
At the time, like you, he was simple not easily reached for treatment, the miles to far to try. So I found a fellow that Dr. Ono had worked with and he was close enough to see regularly.
I did the Mirapex route, only to have it raised over and over again. Still leaving me in horrible pain and sleepless. I tried the most of the other stuff, but always resisted the pain medications. I was able to use sleep medications when we traveled, which we did often around the early stages of RLS treatment. The end of the Mirapex story is in this thread (pharm) called My RLS Mountain.
http://rls.org/phpBB2/viewtopic.php?t=293
I can't blame you for not wanting to chance going backwards with your treatment. It's a horrible thought of being back where I was.
I would venture to say that a call or a letter from Dr. Ono maybe at the very least help to explain this to your new doc.. I doubt that any untrained RLS doctor is readily willing to write a script for most pain meds, let alone Methadone. Many docs don't seem to want to hassle with pain meds in any form. It's a shame that in this day and age we are still having to explain the practice of pain management. But here we are.
I'm with ya KJ, get on the phone, write the good Dr. Ono a letter, a fax.....good gosh something.
I'm with ya KJ, let me know how your doing with this. And as always anything I could do to help I will.
Hugs to ya.
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Andreas
Drugs
I have followed the Methodone question here and thought if it was helpful ,I would repeat what I had wrote else where.I have been on Methodone for over 4 years now after lots of different drugs etc and treatment.I said no to it for a year until I went on it as I had my back against the wall as you all do at times.I find it works very well,I take it twice a day with meals (it can make you feel ill/vomit).
After a year I needed to go up and now are on the limit for my body weight etc.
Once I forgot I had taken that evenings amount and overdosed with a trip down to the hospital, they decided against pumping me but it was a scacy 12 hours (thats how long a bad effect could take).As a side note after taking twice the amount of methondone and a high amount at that, my RLS was still killing me.Your body does get use to it (meth) over time slowley.It has been the main drug that has worked for me.In my" Hello I'm from New Zealand " I talk of another drug I will be going on that I haven't seen mentioned here, the letter/discussion can be found in the new comers section.
My Doctor's have told me as long as my body is using the drug for pain I should not get addicted.Time will tell.
I hate having the stuff in the home.I started with RLS effects when I was 12 (now 37, my mother and GT grandad had similar ailments).My knees are of a poor design and my elbows are now bad at times too.
I'll ask most questions I can help with if you want?
Karl.
After a year I needed to go up and now are on the limit for my body weight etc.
Once I forgot I had taken that evenings amount and overdosed with a trip down to the hospital, they decided against pumping me but it was a scacy 12 hours (thats how long a bad effect could take).As a side note after taking twice the amount of methondone and a high amount at that, my RLS was still killing me.Your body does get use to it (meth) over time slowley.It has been the main drug that has worked for me.In my" Hello I'm from New Zealand " I talk of another drug I will be going on that I haven't seen mentioned here, the letter/discussion can be found in the new comers section.
My Doctor's have told me as long as my body is using the drug for pain I should not get addicted.Time will tell.
I hate having the stuff in the home.I started with RLS effects when I was 12 (now 37, my mother and GT grandad had similar ailments).My knees are of a poor design and my elbows are now bad at times too.
I'll ask most questions I can help with if you want?
Karl.