please stop recommending buprenorphine as if it were nothing. a serious side effect can be (if not even: will be) neuroinflammation (microglia-mediated inflammatory response) because it blocks the kappa opioid receptor, unlike other opioids. this is serious.
massive hyperalgesia can also occur (as with any other opioid). and so on.. . i can't stand these superlatives here. this is dangerous behavior. please stop that. this is not a "wonder drug".
i wish you all the best.
ps: i also recommend to finally stop calling this horrible disease "restless-legs-syndrom". it is now called: willis-ekbom disease. and there are good and important reasons for that.
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snoemata
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What is the point you are making? Are you saying to not recommend opioids? a different opioid? All drugs have side effects, Buprenorphine being a controlled substance definitely has its share.
Regarding the name - why do you think the original name is better? This is the name the medical community is using.
It is a very powerful medication with side effects. That being said. It's not like someone can go to a store a grab it off the shelf to give it a try. It's very difficult to get any opioid prescription these days. People asking questions about it usually fall in the severe category for symptoms and have probably failed numerous treatments and medications. It's reasonable to become an advocate for or against a medication if you have experienced its benefits or side effects up close and personal.
It’s called Restless Legs Syndrome also known as Willis Ekbom Disease. I was there when the RLSFoundation changed the name tried to change the name because they eventually went back to the original name. This forum at the time was asked by RLS-UK if members wanted to change the name and majority voted to keep Restless legs Syndrome so this forum will stay with the original name. Some members like to use the WED name but most use RLS. You joined the forum yesterday and your first post is to tell people what they should or shouldn’t be saying !
Ten years ago, the RLS Foundation in the United States changed its name to the Willis-Ekbom Disease (WED) Foundation, to reflect a new medical name which was being applied to RLS.
We in the UK were uneasy about adopting this new name and therefore carried out a postal vote, asking our UK members for their thoughts. An overwhelming majority favoured retaining the term RLS rather than adopting the term WED, so we committed to retaining our existing name RLS-UK and respecting our members' views.
The Willis-Ekbom Disease Foundation later announced that it was reverting back to the title 'RLS Foundation'.
Nobody recommends this drug as if it were nothing. Most people like myself understand how opioids work and the drawbacks. I chose to take an opioid under the guidance of my GP. It saved my sanity.
The one single most important thing about this forum is that advice is given genuinely and politely. As a “veteran”, at 66 years old, of trying a large range of medications, some of which worked for a while, some not at all, some with side effects and some that did nothing, a common experience for forum users here, I felt safe enough to contradict one of our experts regarding Ropinirole. When I realised I was wrong and she was right, I could also post my apology. That is what we do on here. I have previously contrasted this with political forums I am involved with, and how different (and refreshing) this one is, in comparison. We must never lose that, because our discussions do so much good for our fellow sufferers. So, snoemata, please do make your points, give your comments and your experiences. They will be valued by everyone, but possibly you could consider a slightly less “direct” tone? I, for one, do want to read what you write- it might not help me now, but may do in the future. Thanks.
i cannot answer anyone. this is the internet, year 2023, logged in with a third party, so i will not share too much of my own experience with this disease (not a "syndrome" with "funny-non-serious-sounding" "restless legs") called WED (i have done that in the past, and it was a failure). but i am a reader here since 1 year. after that time period, this was something i had to say/write. i did not "say" buprenorphine resp. opioids should not be used. on the contrary, those who actually suffer from WED are left with no other choice (in the end) due to the - imho - incompetence of "science" in this context.
but that does not relativize my particular context. there is no point in repeating my original post, and i don't know what else to add.
thank you very much for your kind post and i wish you all the best.
Please explain in clear, cogent, non-emotive language the precise nature of your concerns about Buprenorphine. Provide the provenance for these concerns via links to the materials that have led to your view. The active members of this forum are intelligent and well-informed individuals and should be credited with the objectivity and discernment to be able to approach their own conclusions, given access to well-resourced, substantive data.
As to the nomenclature issue of Restless Leg Syndrome versus Willis-Ekbom Disease, what’s in a name? Surely our energies would be better directed towards raising awareness within the medical profession of this dreadful condition.
I agree with Dick Jones. I have had RLS for 40 years and by far the best thing for me has been to join this forum.All the members suffer from RLS & genuinely want to help each other. Everyone is different & no one says "you MUST" take this or that drug but they just try to help with their own experiences.
I have been a member of the RLS foundation for years & I have been up to their workshops organised by the European Foundation.
We all pooled our experiences to help the researchers.
I was also one of the patients used by St George's Hospital in my 30s.
I think you will find members well informed & it is always stressed that we must consult our doctor.
When I am feeling really low I find there is a wonderful sense of humour strand running through the members & so often one of them makes me laugh - the best medicine going.
The true horror of RLS is getting up in the morning to go through your day with the same horrible night of no sleep, knowing it will probably be the same thing again, and again. The true joy is finding something that lets you say "I think it's helping" - even just a little.
I was very interested to read what you have written.
I don't currently take buprenorphine but it is one of the drugs that i have in my "back pocket" should i need it.
I'd like to know more about what you've shared. Is there any particular article you could recommend as a starting point?
It's always difficult to know whether the benefits of a particular drug outweigh the risks, particularly when there is still so much the medical/scientific community don't know!
it's complex, often contradictory, and doesn't fit into this medium. the best approach to this topic would be to take a close look at dynoprhin, and in a further step, to conclude what a blockade of kappa and delta receptors (that's what buprenorphine does, among other things) could mean and affect in exactly this context. some studies:
and so on. a university library and current literature will provide a better overview than the internet (paywalls).
i don't want to be alarmist, and buprenorphine is one of the most important medications for WED, but there are serious underlying concerns. this also applies to other opioids (of course), but the blockade of the mentioned receptors is unique to buprenorphine.
dynorhpin has a bad reputation, but this is massively relativized in the given context. again, it (bupre) is not a miracle drug. even if it works .. against the symptoms .. what is the price you pay for it. and i see clearly that some users who praise and recommend buprenorphine over other opioids do not want to know anything about precisely that; this was the point i was making. ps: the pipeline of kappa-antagonists developed for depression has been depleted for the same reasons described above.
and now, i go back to read-only mode. have a good day and hopefully a good night.
Thank you for sending the links. I clicked on the first one to try to understand your concern and, wow: the most cumbersome link I have personally ever seen on here. I will have to fully attack it when not tired and when in a very patient mood!
It would be great if someone could break it all down for those of us who are less scientifically minded.
I truly understand what you’re trying to state because any opiate medication has possibilities of severe side effects since we’re also different and we all react so differently to different medication‘s ,that being said the DA medication that they are prescribing also have done much more damage with their side effects for personality change, and compulsive actions causing many members to lose family, friends, jobs, etc. I just have always understood that if you get interested in something that’s mentioned that you do your own research on it because you will make up your own mind what you’re willing to try or not try, that being said it’s always good to point out the possible side effects that someone might have missed .❤️🩹
hi & absolutely. DA medications are the worst. i think we can all agree on that. every so called "doc" should be sued, prescribing this poison (for WED patients).
We do not 'recommend' opioids on this forum, we simply point out that, after dopamine agonists, iron infusions, strict diets and gabapentinoids have failed, opioids are the only option left for severe, refractory RLS. We do also point out that when codeine, tramadol, oramorph and Oxycontin/oxycodone have failed, methadone or Buprenorphine can be very effective because of their long half life.No one can access Buprenorphine without a prescription. Here in the UK, Buprenorphine is red listed in many areas and has to be prescribed and monitored by a specialist. It is extremely difficult to get it.
All drugs used for RLS have terrible side effects. Many people are allergic to gabapentinoids. Many have terrible reactions to Oxycontin.
You mention hyperalgesia. There are reports that Buprenorphine does NOT cause hyperalgesia.
In my case, thanks to Shumbah, I learned about Buprenorphine. It saved my life.
Literally.
So, I understand your concerns, but it would be helpful if you attached the research articles to back up your concerns about neuroinflammation.
Then people can make informed decisions based on the scientific evidence.
I suffer MS, as well as RLS, and RLS is far, far worse than MS.
Buprenorphine at 0.4.mg controls my RLS completely. I sleep 8 hour's every night. My MS is more settled. I no longer research ways to end my life.
I would rather have a shorter life on Buprenorphine than a longer life suffering uncontrolled RLS.
This forum gives out the relevant information and the up to date research set out in the Mayo Clinic Algorithm.
Buprenorphine is the preferred opioid amongst experts because of its long half life and it is less likely to cause respiratory depression. See Dr Buchfuhrer's and Dr Berkowski's website and the Mayo Clinic Algorithm for more information.
I hope your RLS is fully controlled and I wish you many good night's sleep.
I'd have to agree with Joolsg about this mainly because I'm one of those people who is allergic to the gaba meds and has augmented on other medications.
I'm now reluctantly going down the route of another opioid because there's nothing left for me. It is very, very likely I will have to go on to Buprenorphinehine in the near future because my condition has progressed/worsened and all previous attempts have failed to control it within a short period of use. I genuinely can't see any other way out.
Being someone who has tried everything under the sun and has suffered 'quietly' until menopause hit - I just can't live like this anymore. We have to use what's available to us and so many medications cause issues, side effects, potentially very harmful side effects but what is the alternative if nothing else works?
Hi, this is my first time back here in 2+ yrs, partner died of CV in v traumatic circs & my mental health very effected by it.However I'm back & on the hunt for changes in UK citizens ability to access Bup..it is the Holy Grail for me, after years on Morphine for this Devil's illness.
I've tried it for chronic pain & it worked really well for my RLS but I couldn't get a continuing prescription.
No med for severe RLS are risk-free, this forum has always been attended by pretty clued up, intelligent folk.
Bup is very hard to get prescribed in most countries & not avail otc.
Risks v benefits usually discussed btwn Doctor & patient. Refractory Severe RLS related depression carries a high risk of mortality. I know many here relate to that type of desperation.
The name doesn't describe the fullness of the condition, I share your frustration on that.
However, it's not relevant to obtaining medication for it. The more serious sounding label didn't/doesn't result in a change to the treatment & care we deserve, just so we can hv a quality of life.
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