Has anyone tried Methadone for RLS?

HansDB -  In all due respect, you are not correct about methadone and RLS. I've been taking a very low dosage (15 mg) methadone for my RLS for over five years, with no reduction in efficacy or need for higher dosage. My physician, Dr. Christopher Earley at Johns Hopkins, is one of the world's leading RLS researchers, and had documented this clinically. One of my sisters also has RLS,  and has likewise realized fabulous results with low - dosage methadone. Spread the word! :-)  Cheers. 

I guess it depends on each case, for me it stopped being effective. But it definitely worked quite well for some years.

My case was extreme though, I needed a very high dose of morphine to get any effect at all, I was a zombie for years. Maybe that is part of why it stopped being effective.

I found this helpful tidbit on the Johns Hopkins website:

"Opiates and RLS

Dr. Willis in his description of this disease in 1685s also reported on the benefits of opiates for treating the symptoms.  Thus for over 300 years opiates remained the only truly effective treatment for this disease.  This category of medications includes codeine, hydrocodone, oxycodone, morphine, hydromorphone, methadone, buprenorphine and pentazocine. It is estimated that 85-90% of patients with RLS will respond very well to opiates.  An analysis of drug responses in RLS over a 2 -10 year period showed that 85% of RLS patients who started on methadone were still on it compared to less than 20% of those started on a dopamine drug. The median starting dose for methadone in this study was 10 mg per day with a range between 2.5 mg and 20 mg per day.  It is important to realize that RLS for a majority of patients is not about pain; it is an abnormal, uncomfortable sensation. Tolerance to the opiates when treating RLS seems to be less of a problem than that seen with treatment of chronic pain disorders."

Here's the URL for the webpage: [url=m.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/treatment.html#opiates]m.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/treatment.html#opiates[/url].

HansDB - I just had my regular follow up appt with my RLS doctor at Johns Hopkins, and we got to talking about Methadone and RLS. He told me that the neural pathways of Methadone aleviating RLS are different than reducing pain, that it actually goes to a different part of the brain. He's been prescribing Methadone for hundreds of RLS patients for almost 15 years, and not one patient has had to increase dosage, or experienced reduced impact. As you indicated, this is not true for pain, as more and more Methadone is often needed. But RLS is different. He also said that because of the neurology of RLS, dependence on Methadone has not been an issue, that zero of his patients have had problems with becoming dependent. So taking all of his comments together, I would say that Methadone is by far the best medication for RLS. It simply WORKS. But my doctor wasn't sure if Methadone is available in the UK for prescriptions. Can anyone comment on whether UK doctors are allowed to prescribe Methadone? When I read about all of the people on this site who are suffering terribly with RLS, I just want them to get relief, and wish they would at least TRY Methadone. They will be amazed and immensely grateful. I certainly was. Good luck!    

I'm in the U.S. and had used Methadone for a little over ten years to escape this awful curse ... but ... most Dr's here cannot prescribe it anymore for anything other than to treat heroin, (or similar drug) addiction.  I was cautioned about the dangers of long term Methadone use, and I must confess that during that time I was taking it I suffered from chronic Heart Burn/Acid Reflux, Constipation, and some respitory problems, (for example I could not sleep on my back, would wake up after about an hour coughing - would last 15 or 20 min before it calmed down enough to return to bed.  Minor inconveniences compared to the RLS but significant all the same.  My advice to you anyone considering Methadone would be to be very careful and make sure you can tolerate it as some folk have died due to strong negative reactions to this drug.  If I could, I would use it again, but I would alternate between it and Requip, (ropinerol), every couple months.

Hi, I understand this thread is a year old, but I am at my wit's end with my restless leg syndrome now and like to try Methadone but am afraid of the side effects such as constipation.  I heard that many patients on Methadone have to give it up because of the constipation issue.  Would you please share with me if you experience any constipation?  Thanks.

Hi Zu, first off, let me ask you if you are taking any substances that might be making your RLS worse than it has to be such as SSRIs, certain antacids, antihistamines, melatonin, statins, calcium channel blockers, HRT, metformin and even sugar substitutes?

Pro-motility drugs can also make RLS worse than it has to be. I see I responded to you before so sorry if I repeat.  Like it or not, right now researchers feel confident that RLS is caused by dysfunctional brain iron acquistion/management. Is IV iron something your doctor might consider?  I know you tried the iron bisglycinate but I find timing to be everything. I have to take it during an attack, which is always at bedtime. If I took it in the morning it would do nothing for the RLS at night.

Hi, Udon,

Sorry I haven't checked my email for the last two weeks and missed your comment.  I have read all the communication you had with other members and learned a lot which I am very thankful and not to mention I am very impressed about your extensive knowledge on this area and also leaned about the spiritual aspects of you, my hat off to you.  

Acutally I have tried pretty everything on earth for my relenless restless leg symptoms except the dopeminergic agonist drugs for fear of augmentation. Thanks to your recommendation I have bought Iron Plus topical patch which containsVit C and iron as iron bisblycinate 45 mg.  I have used for the past week and still am waiting to see if it is effectve.  I actully applied on patch just before I go to bed. So far I still experiences the terrible symptoms all night long.  Would you please elaborate as what is pro-motility drugs?  

I am thingking to try Methadone as my last resort but I am concerned about the constiption.  By the way I have try to avoid anything aggravating the problems including antidepressants, melatonin, benadry, antiacid, etc.

Thanks for your infomation and knowledge.

Oh my god there's a transdermal patch with iron bisglycinate!!!???  Do you feel confident that the iron is getting into your bloodstream?  I gotta google that patch.  Anyways, the important thing is you.  We gotta get you comfortable at all costs, even if it means methadone.  Here are a few things to think about.  Could you have SIBO - small intestinal bacterial overgrowth?  It can be tested for via a hydrogen/methane breath test.  Pro-motility drugs are given to speed up gastric emptying such as a drug called Reglan or compezine and then there's a canadian drug.  They're not laxatives per se, they increase motility in the upper GI tract.  They're also used as anti-nausea medication for this reason.  VERY bad in terms of RLS.  These drugs are dopamine ANTAGONISTS.  They will make RLS much worse than it has to be.  I need to look back at your original post, I remember thinking there was something odd.  Like the RLS got worse months after your surgery or something like that...stay tuned.

YES, absolutely YES, the low dosage Methadone I take (15 mg) has been a lifesaver for me. It worked right away the first night, and has been great ever since (5 years and counting). Unlike Martin80629, I've had NO side effects that I notice. Most gp's avoid opiates, so find a good sleep doctor (younger), and s/he should prescribe Methadone for RLS. Here's an article from the Johns Hopkins website that may help convince your doctor that it's okay:

Good luck!

Emis Moderator comment: I have removed the link as it has already been posted in a comment above.

hi, I am glad to see your experiences with Methadone, and understand how effective it is.  My concern is the constipation, I heard a great many patients on Methadone have to give it up eventually because of the opioid-induced constipation.  Would you please share with me on this aspect of the drug and how do you manage it.  Thanks a lot.

Most painkillers have the side effect of constipation. I used to use codeine phosphate for plane trips and meetings but the constipation would result. I only take 5mg Methadone with 1mg Ropinirole now and also take a sachet of Movicol along with a sachet of Fybogel and so far have no constipation.

HI, Ron65035, thanks for your reply,  I will look up on Google.