I have been taking Buprenorphine for 5 weeks now and I am not exaggerating when I say it has changed my life. I have dealt with restless legs all my life. Everyone in my family had it, one of my brothers gave up on life because of it. I was taking Cabaser to treat it since about 2000. I started increasing my dose about 5 years ago. Augmentation hit about 2 years ago along with some personality changes. About a year ago I started taking Targin, then Lyrica as well as Modafinil to counteract the effects. The last three years have not been pretty. 5 Weeks ago I started taking Buprenorphine. I feel fantastic once I sleep through the night, I have energy the next day, and I am not having any sleep attacks. I am just worried about the long term what have other people's experiences been with this, especially in the long term?
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Nycsyd
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I have been using that medication for just about a year and a half now and it has given me back part of my life and I will forever be grateful, I may not sleep well but every night of not having relentless moving is a blessing. All medication’s taking long-term have health consequences but we just keep on our toes( kinda a joke) and do the best we can. Wishing you the best of luck with this medicine,may you have a long peaceful journey.💟
That's great that you have finally found relief. Most patients don't develop tolerance according to the Restless Legs Foundation's publication Night Walkers summer 2022.
I live in NSW Australia. I went to the Woolcock Sleep institute in Sydney they then referred me to a specialist in Opioids. I also take a powder form of Gaba and have a diet low in Glutamates. I am using a patch I have heard the pill form can rot your teeth? Right now I can only get a two-week prescription. My GP has to send in a special request for me to get a longer prescription. I also don't tell people who don't have RLS what I am taking so many people get funny when I tell them, Anyway stay away from those cruise ship sinks lol. I have a half patch I save in case of emergencies.
QUESTIONS!! I must know specifics. I am about to request a switch from methadone to buprenorphine.
Shumbah and others taking buprenorphine: There are many different formulations-- oral , sublingual tablets, sublingual film, transdermal patches, plus some are combined with naloxone and some aren't. For those of you who said they got great results. PLEASE post exactly what formulation and dose you are using. Maybe even say what time of day you take it.
My "Quality Care" RLS doc, who is excellent, only has experience with one formulation of buprenorphine and was not aware of the tooth decay issue with the sublingual forms, but he is open to learning and allowing me to guide treatment to a certain extent. So I am appealing to this group to educate us.
Shumbah you gave your mg dose, but is that Suboxone? --i.e., buprenorphine/naloxone--or straight buprenorphine? I thought the FDA discontinued sublingual buprenorphine without naloxone because of concern for IV injection.
Anyone having any problems, or benefits (less constipation??) with the naloxone combo?
Nycsyd, is there any problem cutting your patches in half? How do you adhere them to your skin after cutting away half the sticky part? Does it change how rapidly the drug gets absorbed? Nycsyd and others on patch: do you get a full 7 days effect from it or do you ever have to change patches early, or leave it on longer? Can you swim with it?
I need to know all this before I talk to my doc about bupro. THANKS!!!!
Choosing wisely is so important since, according to Latediagnosis, I need to "be prepared to take it for life."**
Wishing you all restorative sleep,
Dr. Placebo ;O)
(Smiley face because I took armodafanil today. No armo, no smiley ;-{ )
**Latediagnosis, why did you feel you needed to stop taking it, and what did you replace it with?
So I wear a Norspan patch that delivers 20 micrograms per hour. It has now been 1 year and 1 month since I started. I hate taking medication so I tried two weeks on 15 mics per hour it did not work. I change my patch every Sunday and I try to do it around 11-12 in the afternoon. I do find that on Saturday it becomes less effective so I keep both patches on Sunday night to keep the dosage up and take the old patch of Monday as soon as I wake up.
I have cut the patch in half with no adverse affect. I have recently read that because of the way the patch is designed that you do risk an overdose. The other pain is that if you cut it in half taping up the cut edge is a pain.
When I put the patch on (usually on my deltoid) i really was the area and shave off any hair to improve adhesion.
Spending a lot of time on the water is a pain. I am looking at better ways to water proof it. It is coming to summer time in Australia so I need to come up with a better solution. The thing I hate is having the patch and not wearing a shirt. People see the patch immediately. I thought about making a stencil and making it look like a tattoo, but i think it would make it look more obvious. I haven't been wearing a wet suit so not sure how that will hold up. Anyway hope this helps
Hi, I also started buprenorphine patch 10cg 5 weeks ago after being on Targin which had stopped working.
The pain from my RLS has gone from a 9/10 to a 2/10, it’s been miraculous for me. I dont sleep through the night and still feel it coming on but now is so mild and settles quickly. After being a sufferer for 30 yrs , never thought this could happen!
I wasn’t aware of the sleep attacks but am suffering from them probably 5/7 nights I completely pass out (always watching tv)
That is fantastic. I have also cut down on foods high in glutamate. There was a study at John Hopkins that found the high levels of glutamate in the brains of RLS sufferers reduces the quality of sleep. Now I avoid foods high in glutamate, which sucks because I love grapes. I also take Gaba in a powder form. Potatoes spinach and broccoli are supposed to be high in Gaba
I have been on the buprenorphine patch now for two and a half years at 15mcg. After the initial trial to see what dose I needed, I've stayed on the same dose with blessed relief at least 90% of the time. I can put the breakthrough times down to what I eat, increased pain in my legs due to osteoarthritis and a change in the weather (air pressure) and over/under exercising - by which I mean keeping active.
I was affected by opioid alertness so now take 300mg gabapentin at night to help calm my brain and allows me to sleep.
Buprenorphine is such a wonderful drug and how amazing that I've found something that makes life good. I didn't dare hope it would work but it did!
I think more people than anyone would think, have considered suicide as a result of the hell we go through with RLS. I am so sorry your brother died as a result of his RLS nightmare. I know so many of us will understand how it can happen, and have considered it when things were bad.
I am so glad you've found something that will keep your legs calm and given you back some quality of life. From all the literature it seems that we shouldn't need to increase the dose and so far, that's the situation with me. I'm still on the same as 2 1/2 years ago.
thankyou for the feedback. I am glad to see you are getting relief. I find that avoiding foods high in glutamate is making a huge difference. So even thought I love grapes I've had to give them up totally
Yes, glutamate is a big factor. I wish more research could be done on all these foods and the chemicals in them. There is so much we know anecdotally and it would be wonderful to have the science behind it understood. I hope you too continue to find relief and you life continues to improve.
I don't really follow a protocol, I just try to avoid foods high in glutamates: grapes, tomatoes, aged cheeses. I can't really tell if there is a difference as the results are supposed to be long term. Best of luck
I am glad that they have finally found meds that suit you. It makes such a difference to your quality of life. I also went through a range of different meds and had some dreadful experiences. I have been on Buprenorphine for nearly 10 years and have thrived, it changed my life. I hope it carries on working for you. Cheers.
I live in England. I don't think I have been presribed Subutex so can make no comment on the effectiveness of it.
I was first diagnosed with Spondylitis in 1989 in the lumber region, by 1995 it had spread into my neck. Now it appears that I have 3 or 4 different types of arthritis in my spine but as my physio said, arthritis = pain. In the first 10 years or so I was on various types of analgesics and for a while they worked. However, as time went on I was put on stronger and stronger meds, with various issues and side affects, including breathing and daytime hallucinations - scary.
Eventually, I was prescribed Buprenorphine 5mg transdermal 7-day patch. They changed my life and I was on this dosage using Paracetamol for breakthrough pain. I stayed on 5mg for a number of years, then the Buprenorphine was increased to 10mg. To my knowledge, I have no side effects apart from the occasional itch where the patch is. For me the patches proved an effective painkiller and kept me mobile longer than the Consultant thought I would be.
They really did change the quality of my life and I am forever grateful to the Dr who prescribed them.
I hope that you find something that works and doesn't cause other serious side effects which as far as I am concerned the side effects can be worse than the medical condition they have been prescribed for.
I’m in my 60s and had to fly from Australia many times to the US even spent 5 days in John Hopkins
Finally found a compassionate Dr in New York
2 mg subliqual Subutex which is buprenorphine without naloxone 4 years of peaceful sleep.
However 3 of my children have it 10 family members in all.
My son who was born and lives in the UK he is really starting to suffer .
I don’t think he will be able to run his landscape business much longer it’s so cruel.
I just got off the phone to him , I’m flying him to NYC I will fly from Oz to meet him there in March to get him a supply of Buprenorphine and a letter so will be looking for a prescriber in the UK
would you mind sending me a message with dr details for continued care in the UK . He is early 40 s 2 children one with a disability. I want him to have some form of quality of life.
They just started him on amitriptyline God help us dumb medical professionals.
Sorry mistake on my part it is mcg not mg. The doctor who first prescribed it has long since retired and I also moved out of the area. However, I am still being prescribed Buprenorphine and am still coping well with it.
Perhaps if your son is in England you can find a doctor via NHS England website. Good luck with your son, My son had his first heart attack at 40 and has aggressive high blood pressure the medical profession is having a problem controlling. Like you, I would do anything to help him and his health condition.
I so APPRECIATE your Replies any chance you could do me a big favour as a mater of urgency , would you please do an email for me with your family history of RLS .I does not need to be lengthy family members and what has worked don't need your list of failed you can put the 20 other drugs where pure hell and unsuccessful .
The weirdest thing this lady is on 15mg like you has the same back situation from multiple failed back surgeries. So apart from her back she sweats because she has had brain cancer and they have stopped her hormone patch so she is drenched in sweat and of course her legs, she no longer sleeps ,sits or eats lives on sustagen and vomits everyday even on 4 hourly zofram 4 mg now weird bit last week she put on 15mcg Bup patch 2 week of celebrex still 6 days to go and 6 days on predisone and guess what she was back , she drove the care did the shopping no sweating at all and slept like a baby she felt amazing.Then the prendisone course ended and she is back to 10 score suffering. She Bup is being increased to 20 mg next doctor visit hopefully tomorrow.
What does you son take ?
my sons is a bit different he has a lot of pain in his arms he cannot sleep for the pain he wakes up and feels like he has been boxing all night and that he is full of lactic acid.
He has a physical job busy all day until he stops and gets in the car and it all starts he gets in the car and his arms start. Sadly he has just getting to a point where he goes to a job and has to leave after 20 minutes.
NHS has been useless ,I would love to know where you are who is your prescriber so I can get continued care when he gets back.
Just a heads up for those taking or thinking of taking Buprenorphine. I started on 2mg Buprenorphine 10 yrs ago and spent the last 7yrs trying to stop taking it. Withdraw from Buprenorphine is 1000 times worse then any dopamine antagonist and even worse then short acting opiods pain medication. If you start taking Buprenorphine be prepared to take it for life.
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From all the literature it seems that we shouldn't need to increase the dose and so far, that's the situation with me. I'm still on the same as 2 1/2 years ago. 
Buprenorphine 
Buprenorphine/Subutex
Buprenorphine
buprenorphine for RLS
