I am interested in hearing from others of their methadone use. Did you start out with a small dosage, and within months, became immune to that dosage, and increased it? I began with 5 mg, 2.5 mg twice a day; now it is 10 mg, although, I am reluctant to increase it to 10mg. GI problems is another factor and disadvantage. I am worried, that in months, the dose will increase to 20 mg and beyond. I also work with the GI doctor as well, yet their prescriptions are costly, $50 per month, and they offer no savings with it. Interested in hearing from the members.
Methadone Use: I am interested in... - Restless Legs Syn...
Methadone Use
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vikkitennis
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Welcome to the forum. You will find lots of help, support and understanding here. I see on your profile you list gabapentin, pramipexole and neupro. Are you taking any of those now and if so how much? And what is your experience with them?
Hi Sue, I am not taking the listed medications; gabapentin was in the 90's and 2000-2015 era. then it was ropinerole, neuro patch, Horizant; prampipexole. As you can see, augmentation would set in, and a former neurologist would change the prescription. I began seeing a different neurologist from the Barrow Institute in Phoenix 2021, I believe that was the year, he prescribed the pramipexole, then prescribed methadone at 5mg. After one month, I stopped the methadone, as I don't care for opiates. The neurologist I see today with Banner Research and is a movement disorder doctor, gave me the information and why methadone is used. I have been using it for four months, and I notice flying aggravates it. He would like me to take 10 mg per day, 5 mg twice per day, with 15 mg when I fly. He is away for two weeks, and I cannot see him until December. I can communicate with him through the patient portal, yet he won't return until September 4th. I am concerned augmentation will occur again, and then what is the next step?
Augmentation only occurs with the dopamine agonists like pramipexole, ropinirole and the Neupro patch, which is I assume what you meant, and with Tramadol. You can't augment on methadone so I wouldn't worry about that.
Flying definitely aggravates RLS as you have found.
I see in a subsequent letter you said you don’t like opioids. I don’t either , but my RLS was so severe I became suicidal. I tried every known opioid and the only thing that finally helped me was Methadone. ( as I mentioned in a previous note)z. Flying aggravates RLS— not Methadone. I am very naughty, and keep some wry sinemet And some pramipexole on hand and take one or other when I fly , or for the dentist, or a long train or car journey, or an evening concert , with excellent results. I can pretend to be normal!
I live in Australia and Methadone costs me $30 per month. It is a performance to get it and tons of paperwork ongoing.I put up a prayer every time I hold my new prescription in my hot little hand!
Good luck
According to the Mayo Clinic Updated Algorithm on RLS the usual effective dose is 5 to 20 mg. Once you find the dose that works for you, you shouldn't have to increase it. Assuming you mean constipation, Movantil works for opioid constipation.
If you aren't familiar with the Mayo Clinic Updated Algorithm on RLS check it out at Https://mayoclinicproceedings.org/a...
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.
I was using Movantil, but the pharmacy has a hard time stocking it, and I gave up on it. The GI doctor prescribed something else, and yet, I need to pick it up, and pay the $50 co-pay. I asked the neurologist about the iron level, but he dismissed it, as it was checked last year. He said "they" (unsure what and who they are) says every two years. I had it checked last year, and the ferritin level was at 88. I had an iron infusion, and that is when I was weaning off the pramipexole.
You might want to check GoodRx - I often find my prescriptions cheaper than my insurance sometimes a lot cheaper.
Your neurologist is wrong of course. Normally you would have it checked 8 weeks after your iron infusion and then after 6 months after that.
Thank you Sue, I appreciate your input. I alerted the neurologist who is filling in for my doctor while he is away. He told me to contact him when he returns in over a week and ask for the level to be checked.
I checked with GoodRx, and the drug didn't save me as much. I have also come across another delay in receiving the medication, as Walgreens do not have it in stock.
massgeneral.org/rls-registr... may find the National Opioid Registry helpful. It confirms that an upwards increase in dose in the first year is normal, while you find the correct dose that works. Then, tolerance doesn't tend to happen. Most people stay on the same dose for a long time. The dose you're on is below the average.
As for GI issues, I highly recommend Symprove, a pro biotic drink. I don't know if it's available in the USA though.
It is available on Amazon in the US
Thank you, I will look into the Sumprove, and also the Registry site.
I started with 5 mgs. I have been taking methadone for about one year. I had to increase it after a shoulder replacement in December. I now take 7.5 mgs and I get fair results most nights.
I appreciate your feedback, reading from the viewers eases my concern.
I'm in the US and started on low-dose methadone therapy 5 years ago at 10 mg per day. Since then I get 8 hours of restful sleep every day and have never felt a need to increase my dosage. I drink a large mug of coffee every morning and never have a problem with constipation. I thank my lucky stars every day that I've found a doctor willing to prescribe methadone for RLS; many people aren't able to. (Five or 7.5 mg/day of methadone is not enough for me.)
Thank you for your reply, I appreciate it your response. I do have one cup of coffee in the AM, I am extremely active, playing a multiple of sports, and try to keep up with the liquids. I appreciate my neurologist and respect his knowledge with prescribing methadone, along with the many members from this site and their experience.
Hi! I have been taking Methadone for about 2 1/2 years now after augmentation with Tramadol.
Once I titrated off the Tramadol and onto the methadone I was taking 5mg twice a day. Once at 8am and then again at 8pm.
This was good for I think about 9 months then I started to get a bit of symptoms at night. My Dr added 2.5mg at night. So 5mg in the morning and 7.5 at night.
I've been on that dose ever since with mostly no symptoms. I do notice that if my activity changes, either more or less than I'm used to, I will have some RLS symptoms but nothing a hot bath doesnt take care of.
I have seen other people here that take more that the 12.5 total daily that I take and others that take less. My Dr said I could go up to 20mg a day off I ever needed to but so far other than the slight dosage increase I've been good.
I was worried I would be on the 20mg by now as I have RLS symptoms in my whole body 24/7 without meds but thankfully that's not the case.
Thank you for your reply and your experience with methadone. This site is easing my concerns with participants like you. Drugs is something I stay away from, as an athlete, but I am a the point with RLS and the many prescriptions prescribed in the past 25 years +, to carry to the next step, which is methadone.
Thank you for your experience with methadone. Neurologist prescribed recently to increase from 7.5 mg to 10 mg, twice at 6 hour intervals, after placing myself on methadone three months ago. I reluctantly did so as of this week, with the encouragement from this forum. At this time, I have not seen improvement with RLS, but will give it a week and see if I benefit from it.
Hi Vickitennis, I am on methodone and have been on the same liquid dosage of 15 mgs before bed for over 2 years now. Sometimes I take less ( half the dose) or I'll miss a day because I don't feel the need for it, or I just forget to take it because my legs are not acting up. Unfortunately for me, I had to start with a high-dose of 30mgs and work my way down. But that is because I had to go to a methodone clinic for drug addicts 'cause there are no doctors in my area that will prescribe method on for RLS. That really stinks when you are not a drug addict. But you have to act like one just to get your legs to relax. I had to go as far as to go in and say I'm a drug addict because I was prescribed vicodin for a knee replacement so I took a vicodin and failed my drug test.
I will say this when I worked my way down to just 7 mgs from 30, It did not hold and I had horrible nights on and off for a while so basically, I read my body and got to the dose that I felt I needed. Some many nights I'll take 8 mgs but it won't be enough so I'll take a little more and other nights I'll miss a dose, this being usually after I take a full 15mg dose the night before., and some nights I'll have to take 15mgs 2 or 3 nights in a row. I really don't like having to be my own doctor, but it is better than being in a complete state if anguish & not wanting to be here because my legs will not stop and I can not get any sleep. I hope this is helped you in some way.
How sad for you, and thank you for sharing your story. What a terrible situation you were in, going to a drug clinic to receive the the RLS treatment well-deserved for you. I appreciate you opening up and sharing your story with me, and along with this site, it is easing my concerns with methadone usage.
I started on 5mg methadone and after about a year went up to 7.5mg. I also take 400 mg pregabalin. I need both to control my RLS. I had been on 500 mg pregabalin but it made it hard to wake up in the morning. When I adjusted down to 400mg was when I had to boost the methadone to 7.5. I’ve been on that regimen for close to a year and my RLS is gone with only the occasional night I have minor symptoms. I take all of the medication in one dose about an hour before bedtime.
I recall the former neurologist from the Barrow Institute in Phoenix two years ago, also wanted to combine another medication in addition to the methadone. I told him no, as I had been on that road before and exhausted all the prescriptions for RLS. The current neurologist for Banner Research appears to be passionate with finding the right solution for his patients, and I respect his opinion. Thank you for sharing your experience. I take 2.5 mg at 6 pm, and 5 mg at 12 midnight, but his advice was to increase the 6pm dose to 5 mg, which I was reluctant, but after reading your blog and others, I believe I will do so.
I see John Winkleman, MD who is an RLS researcher at Massachusetts General Hospital. He recommended the medications I am on (I used to be on pramipexol and tramadol with horrible augmentation from both)
I might need to adjust the time-frame, as I recently increased the dosage to 10 mg, twice at 6pm and at 11pm. Will give it a bit more time to see the benefit.
Hello ! I am writing again as my first note did not reach the forum. I started on Methadone 15 mg at bedtime about 2 years ago. For me it was a blessing. I had tried every opioid with no relief and had been sleepless for many months.on Methadone I got 5 hours of sleep most nights and it was wonderful. About 2 months ago I started to have bad RLS symptoms in the early afternoon as well as at night and early morning .I see my specialist on Monday for my annual visit. He has little knowledge of RLS. I’m hoping he will increase my dose and/ or make it twice daily which is a solution I have read of here. I have a little cache of Methadone and have tried it twice daily with good results. My dilemma is what to tell him, and what to confess to?
Good luck to Vickitennis and may you find good solutions to all your problems. If they are around, this forum is the place to find them.
Gosh, you are correct, and I appreciate the feedback from the members with the forum. After so many anti-RLS prescriptions and reaching augmentation, I am hoping the methadone is my answer. Due to the responses I received from the forum, it gave me the encouragement to proceed form 7.5 to 10 mg. Neurologist recommended it to me, is away with time off until 9/5/23. As of last night, the dosage is not working, but I will be patient and give it a bit more time. The neurologist I see is a movement disorder doctor. Do you have one in your area? He is a compassionate man, and truly wants to help his patients. Possibly you could be honest with the doctor and tell him of your discovery. If you have exhausted all anti-RLS help out there, he or she should understand and help you.
Methadone did not work for me. My body did not tolerate it. Nausea and vomiting mostly. Tried various opioids and settled on Suboxone (Buprenorphine/Nalox).
the only side-effect I have is constipation. I am working on the right treatment and with a GI doctor as well.
I have had RLS for 45 years. Previously, I was on Sinemet, Permax, Mirapex, Requip and the Neupro patch. I can go back even further when I remember taking quinine sulfate. I too struggled with horrible augmentation from all the damage the parkinsons drugs caused. I have been on Methadone now for approximately 6 years and it has given me a life. I am on 5 mg. three times a day. I take it at 2 pm, dinner time and bedtime. The first day I took Methadone, I did not get relief but the second day I had miraculous relief. I think the reason I didn't have relief the first day was that I did not get the benefit from the residual effect that carry over from the previous day. I can't imagine going back to walking through most of the night. Methadone is such a blessing.
You are similar to me; I have struggled with RLS for over 25 + years, and lost count. I heard as we age, the symptoms increase. That is occurring with me. I am extremely active, and play competitive sports and train 3-4 hours a day, yet I can function on 3-4 hours of sleep a day, sometimes less. I have exhausted all the medications on the market, and truly hope the methadone will be my answer. Not at this time, as doctor asked me to up it from 7.5 to 10 mg. I had three hours of sleep last night, and will be patient to see the benefit.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you Sue, you are a wonderful and valuable resource for this forum.
Currently, I am on thyroid medication at 0.05 mg; Linzess at 290 mg; followed up with Methadone recently at 10 mg ( one day; previous it was 7.5 mg for the past two months, began with 5 mg in May)
Supplements are fish oil 3000; Citracel calcium with D3 Maximum Plus at 325 mg; GABA by Protocol at 750 mg; Magnesium Glycinate at 240 mg; Zinc at 50 mg; Constipend by NaturalSlim: 1 pill (Amazon)Content: magnesium at 35 mg, and L-Glutamine, 50, mg
My diet is fairly rigid with one up of morning coffee, salad and nuts at lunch, with some crackers; dinner is more salad, veggies, a starch and either tofu, poultry, or veggie cuisine. I don't eat beef or pork. I don't eat dessert, small bowl of popcorn with nuts is my dessert; dessert is served when entertaining, which is during the "season" in Arizona at 1-2 times per week. I enjoy a glass of chardonnay as I prepare dinner and have 1/2 of a glass with water at dinner. Water is a big downfall for me, as I use a lemonade sugar substitute watered down for the court and fitness, not all the time, but I am so tired of water. Days I have a full morning on the court, I will use an electrolyte in the water. The vigorous exercise will not change as it is an outlet for fitness, socialization, and staying slim. I am 5'7" and 119 pounds. My husband and I work nearby at an Arena, ushering concerts about 1-2 times per week. When arriving home after work at 12-12:30am, I do not eat or drink anything, but water. I began the 10 mg Methadone, twice at 6 hour intervals at night very recent, and have not noticed a change. Will I see the benefit with the increase in dosage in a few days or a week or so? Thank you for your time, Vikkitennis
Everything you take is fine. I would imagine that you would see a benefit in a few days or less.
Hi. I am in the US. My doctor started me on 5 mg. once per day. That was six years ago and I’ve only recently changed to 7.5 per day. Methadone has been a wonderful life changer for me. My only side effect is itching but that only flares up once in a while. Research has shown that most patients can stay on a very low dose for years. That has been my experience.
I started Methadone about 4 months ago at 2.5mg twice/day. I now take 2.5 mg at varying times during the day and 5mg at bedtime. My doctor's original order 4 months ago was 5mg twice/day so I haven't reached that dose yet. But according to a study done 2/2021 ago by John W. Winkelman, MD, who specializes in the treatment of RLS, about 33% of RLS patients had to increase their dose by small amounts. Hope this helps!
It does.
As of three months ago , I began at 2.5 mg twice a day to as of two weeks ago, to 5 mg twice a day.
I am not happy about this, but if it helps, and as of now, it hasn’t helped.
Diet is also very important for many of us. I have to stay on a low histamine food diet, and also very low carb (less than 40G/day), and consume at least 60G/day of protein/day. Another person, if he completely avoids food with glutamates, has no RLS. Another woman, if she avoids 7 vegetables and all dairy, has no RLS. At RLS.org there is a list of foods and substances that all people with RLS need to avoid. Some of the substances, for example, are caffeine, nicotine, and alcohol. Also, avoid dehydration, which is especially important for older people because of varying degrees of loss of sense of thirst. Hope this helps!
I have heard about the website, RLS.org. Interesting. I do follow a good diet without beef or pork, semi-vegetarian with poultry; I limit carbs and do not eat fast-food, sugar is non-existent.. Dehydration is difficult as we live in the desert, and I do not absorb enough water for my fitness schedule. I read vigorous exercise brings it on, which is a culprit for me, exercising 3-4 hours daily. I am already behind the curve ball with these strikes. We usher at an Arena very part-time, arriving home late. Last night I didn't experience the RLS spasms, and possibly the 10 mg Methadone is beginning to settle within. The neurologist is away until next week, with the doctor filling in for him assisting with messages. I would like to have the ferritin and iron levels checked, and brought it up to him at the last visit, one month ago. He mentioned the levels are checked every two years, yet according to this site, after the iron infusion received June 2022, levels were not checked after 4-6 weeks and 6 months later. This was with a previous neurologist. Upon his return, I will press and ask. Thank you vey much for your input, I greatly appreciate it.
Hello. I am a 39 year old female from Bulgaria. I take methadone almost twenty years. When I met the father of my daughters, he was on methadone and former heroin addict, not that he stayed only on methadone, but started to abuse amphetamines. I was 17. I haven't been addicted to heroin, I started directly taking methadone. I think it was my choice to start, it made me feel calm and relaxed, something I managed to do with diazepam and lexotan, since I was 13. Ever since I can remember, I have had this periods of deep, melancholic sadness, anxiety, without any actual reason, most of the time. I liked the feeling of calmness the methadone still gives me, really way too much. I just hated the feeling of sorrow, nostalgia, loneliness. I started once - twice per month, for a few months. Then - once per week. Then - twice per week. In the beginning I took a dosage of 5-10ml,which in Bulgaria we measure in the so called 'kubik'. For example 40 milliliters =4 kubiks. Now I'm on 13 kubiks, which is 13 mililitres. I don't know what is the methadone in other countries, maybe stronger, maybe here the measurements, the quality are different.. In the so called 'methadone programs', most of which are private and expensive, and in the only two state programs, where they treat you like a person without any rights of some sort of normal life, the so called 'nurses', who give the medicine, and are always women, well let's say that they make pretty good additional money by stealing and reselling the methadone, which after that a person can feel. At least in the state programs, in one of which I spend five years, and just coz I smoke weed, they made me go there every effin day. Except for Christmas, Easter, and a few other holidays. I hated it. To have to go every single day outside just to be able to feel kinda good and kinda normal, no matter whether it's 38°C or - 15 °C, felt like insult, humiliation, and if these 'nurses' mocked me /us, it was disgusting. Once they refused to give me the daily dose, because according to their stupid clock on the wall, I had been late with one minute, they were just effin around for their own entertainment. One day I went, and they just told me that I've been, practically, thrown out, without any notice, and definitely without the 21 days of minimizing the person's dose, like it's written in their own rules, so to give the person time to find another, paid program. They didn't even give me a day. Went far, refused to give me the daily dose as well, which was just plain sadistic and evil of them. And I can swear, they were enjoying the whole ordeal.. Whatever. I got lucky, and since then am in a nice program in my own neighborhood, where they give me the methadone once per week, for every day. And the people are good. Of course, hence I pay for that, and the price gets higher every time, when the minimum wage is also lifted, because 'the price is 1/3 of the min. wage. Which does not make any sense on its own, but hey, these are the Balkans, where every law that can be broken gets broken, ironically by the authorities, no matter what kind - police, hospitals, educational system, everyone, who can use you somehow, use you, abuse you, and then go happy home after a productive day of work. I love the land but hate the state. I'm sorry, got too carried away.. Sorry. So, that's it, generally. Have a nice day /good night. ☆With respect and support, yours truly.
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