I have had RLS for decades with real relief pretty well only from the now - forbidden Pramipexole. I have been on Methadone 15 mg at bedtime for about 2 years now which has been pretty good, allowing me approximately 5 hours of sleep some nights. Recently it has worked less well. I’ve been up frequently during the night, and been plagued with bad RLS in the afternoon and evening and during the night. It’s 1 30 am as I write this. I added in some medical Marijuana about 2 weeks ago but it has done nothing. I see my sleep specialist in 2 weeks for my annual visit. He knows nothing about RLS.
On this site I’m pretty sure I’ve seen someone who needed the methadone twice daily. I certainly need something different. I’m seeking your usual flawless and practical advice. I need to be able to put ideas into the expert’s head.
Best wishes and good sleep to all. Thanks for listening .
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wairoa36
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Like Sue says, see if you can switch to Buprenorphine. Or course ensure iron levels are high, try Vit D, Magnesium, consider the various TEN's/Vibratory devices, moderate exercise, avoid things which can aggravate....
My doc has prescribed methadone 5mg - not to exceed 10mg in 24 hours. Perhaps a flexible schedule like this at a higher dose would help you if he won't prescribe buprenorphine..Hope this helps you!
It's not 'forbidden'. I think wairoa means she can no longer have any dopamine agonists because she augmented on Pramipexole. Once that has happened, the only solution is to get off Pramipexole, which is hellish.
I believe that’s what happening to me after being on pramipexole for years! I was surprised it lasted as late as it did! I’m swear by the opiates but here in US finding a doctor to prescribe (other then pain management) is non existent! Then they want to give you all kinds of injections, been there done that! They do help for other things but not RLS and it’s costly here in USA
I gather from your profile that it is not controlling your RLS. You may be suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Is this the case with you? If so post back here and we can give you some advice.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
pubmed.ncbi.nlm.nih.gov/155... max dose of methadone for RLS is 40mg so you could ask for an increase and take it twice a day. Say 10mg twice a day. Or switch to Buprenorphine which has a long half life.
I have been taking methadone for 14 years for refractory RLS. For me, it needs to be in my system at all times or the RLS is unbearable. The amount needed has gradually increased. I now take 10 mg three times a day, for a total of 30 mg./ day. I have No side effects from the methadone.
I tried various types of MM, I can’t say it helped with my RLS symptoms, but the Delta 88 type will help with sleep, as it will knock you out cold once it kicks in. Be careful, as you could fall down as it’s very sadating. Also, don’t only use the Savita type, as the other type give you the feeling of being high. Also, in Oklahoma they sell combinations of THC, and CBD.
Why is Pamipexole “forbiddenn” ? . Only issue I had was supply which now seems to have sorted itself out ! . As I said on a previous post Pamipexole is the only drug that keeps my RLS at bay .
Hey 36, My RLS case sounds similar to yours. I was a long term Pramipexole augmenter and then took Methadone with only moderate success. This beast goes thru phases and variations. My expert specialist adviser now has me alternating Pramipexole and Methadone. I think one can build a little tolerance to the Methadone which could be controlled with an alternative medication while the body resets. Gabapentin type meds and iron supplements never worked for me as well as some other duds. It is always good to mix in the more holistic remedies. Let's keep the faith of something better coming down the pipeline. Your other responders have good ideas also.
Welby, could you please enlarge upon your experience with alternating methadone and pramipexole? How much do you take of each, and for how long? This is interest to all of us who do not manage any RLS drug for too long without 'side' effects. It seems to me to make more sense than using any single drug.
And how did you get to the point of change?
What a smart doctor you have.
Some time ago I wrote to Doctor Buchfuhrer about a drug schedule like this, and he said it was a good idea, but he could give no specifics, of course. I accept that you are not me, but I would love your specifics if you are willing to share them.
(I augmented rapidly on pramipexole, with all the worst side effects. I switched to methadone overnight, but after a few weeks of bliss I crashed on that. I am now on the much vaunted buprenorphine, but the lovely honeymoon is now over. I cannot reach the required dose of Lyrica. So my only way forward is a back-and-forth like yours, getting the best and avoiding the worst).
I feel your pain. Dr. B recommended the alternating meds as a last resort. Here is my history as requested: I took pramipexole (or similar) for about 25 years. I was warned about the risks of tolerance and gambling behavior but not augmentation. About 2014, I became aware of that risk, so I tapered off from a max of 2.25mg of Pramipexole. It was two years of hell to get off the DA. I tried buprenorphine, Lyrica, Oxycodone, Dipyradamole, and iron injections. Not only were those ineffective, but the side effects were bad (especially Lyrica). Methodone (15mg) and marijuana (indica and CBN) around 8pm were about 50 % effective for the next two or three years. Sinamet was tried sparingly which helped a little. Of the holistic aids, perhaps cold water, message from a hot tub, diet, and timely sex helped to some extent.
We reintroduced the Neupro patch which was very effective for about 6 months. When I informed Dr. B that I felt I needed more, he discontinued it. Another period of Methadone was tried for a year. Because I was still suffering, he suggested alternating every 10 days between .375mg Pramipexole and 15-30mg of Methadone. Pramipexole is far superior to Methadone for me. I am taking as little as possible to minimize risk of augmentation. Lately, the best I can do is 5-10 days off the DA per month. Some nights I take both if the RLS symptoms start early. I worry that a vicious cycle will recur.
My next step is likely some electronic stimulation device that is being tested. Hope this helps someone else with severe recalcitrant RLS like mine.
Sounds like your methadone dose is a bit too low. I've been prescribed 20 mg per day, and most days 15 mg is not enough, but 20 mg covers my symptoms very well.
I have extremely high Ferritin levels due to Hematomachrosis--over 800.I had dreadful augmentation on Mirapex and went through the usual agony withdrawing from it 2 years ago. I apologise for using the word 'Forbidden ' in regards to Mirapex. Thanks to all for the excellent advice, which I can use to carefully educate my sleep specialist. It doesn't seem to be augmentation as I get symptoms in the afternoon and early morning only but then it is very difficult. The symptoms are the same-- not worse or in other parts of the body. I avoid all triggers of course.
The pramipexole is wicked! After one year usage, I spent weeks with no sleep, and functioned! How did that happen? No clue, but glad that is behind me. I began recently with Methadone at 5 mg, no help; increased after one month to 7.5 mg, some improvement; increased to 10 mg as of one day ago with the neurologist recommendation and also the encouragement from this forum: results are not there yet. Neurologist is away for a brief time of two weeks, and I believe the iron levels need to be checked, but the doctor covering for him is asking me to wait until doctor returns in 9 days. I believe what the current neurologist told me, and he is a movement disorder specialist: once on pramipexole, and off, the RLS symptoms are worse for those patients thereafter. Terrible thought.
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