I am writing this to highlight how miraculous Buprenorphine has been for me and many others on this site. My sleep app shows how good my sleep is. I had never heard of buprenorphine until Shumbah posted that it had resolved her severe, refractory RLS. No neurologist has ever mentioned it.
Like Shumbah, Buprenorphine saved my life. Like her, I had exhausted all other drugs and nothing worked.
The top RLS 'expert' in the UK told me there was nothing more he could do and 4 hour's broken sleep every night was the best I could expect. I had to push for Buprenorphine and he relented but only if my GP agreed to prescribe. Luckily I live in a health authority where Buprenorphine is not on the Red List.
Ephemera has recently posted that her GP is unable to prescribe it in the South of England because it is on the Red List and only neurologists can prescribe and monitor. Her husband has had several good night's on Buprenorphine after months of refractory RLS.
I know many people on here have now switched to Buprenorphine. It works brilliantly for many of us. For others, the side effects of depression / anxiety have made them switch back to other opioids. Several of us have countered depression/anxiety by adding a small dose of pregabalin at night.
It is clear that Buprenorphine can help severe, refractory RLS, especially after augmentation on dopaminergic drugs, when Alpha2Delta ligands and other opioids like tramadol and Oxycontin have failed. It works in a slightly different way to other opioids.
We desperately need UK trials so it can be licensed for refractory RLS and GPs can dispense without the approval of a neurologist.
Professor Chaudhuri at King's College, or Professor Walker at Queen Sq could do the necessary trials, which are required before Buprenorphine can be licensed for RLS in the UK, but they need at least £100,000 to do so.
If anyone knows any MPs in the UK or any sources of funding for drug trials, please let me have details.
I have already written to all the pharmaceutical companies that make Buprenorphine in the UK, the National Lottery, several research grant companies and all have refused. I've also asked the MS Society and Parkinson's charity without success.
Alternatively, we could ask every person in the UK with severe RLS to contribute £10 but reaching them via this site and other help groups will prove difficult.
Any ideas/ contacts would be welcome.
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Joolsg
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I've been hoping to find that Bill Gates or Richard Branson suffered from RLS, but the only famous person that I've found so far is the ex-Daily Show's Jon Stewart in the US, who I doubt would stump up £100k for UK research...(And as Sue asks, which sleep tracker are you using?)
I'm really happy that you're sleeping so well Jools.And it's very selfless of you to have devoted so much time and effort into enabling others to access buprenorphine.
I may be proved wrong but I suspect it will be difficult to raise any considerable sum via this site.
You've already considered many options so I'm hard pressed to come up with many more but for what it's worth here's my post-medication 11pm brain dump...
I'm not familiar with UK charity/fund-raising regulations but an option could be to run a (sizeable) raffle. Obviously this is a huge undertaking however there are organisations that can run it on behalf of a charity/association or the like.
Another option could be crowdfunding.
Here in Australia many retailers have programs where they ask customers if they'd like to round up the purchase price to donate to a specific charity. This can be in-person or online sales. Is this something that's done in the UK?
• in reply to
Or are there any other neurological societies - apart from MS and Parkinson's - that might provide funding?
No. There's the Neurological Alliance but I've spoken to them. RLS UK is a tiny charity and only 250 people have joined as most people don't want to pay the annual joining fee.A charity raffle might be an idea. I'll look into that. The only problem we will have is getting enough people interested. RLS patients only seem to get involved on help sites when they're suffering. If RLS is under control, they don't need help, understandably.
brilliant Joolsg, I am up for this. And happy to raffle if I could get something worth raffling off ? An online charity auction would be great or raffle night. I’m wondering if I put a post out on FB asking anyone on my friends list to share and take part in the questionnaire perhaps. Then If we all did something like that we could then get a gauge of how many people are suffering perhaps and may be willing to donate . Yes there’s crowd funding we could do, or do one of those Parliament thingysfor it to be discussed and get funding.
Hmmmm ? I’m going to have a think about this, as I am for one a person who has GPs who won’t prescribe because of that blooming red list! It’s rediculous. We aren’t drug abusers! Or addicts - just need a comfortable nights sleep - is that too much to ask???? Or do we look at illegal means and then have to go to drug clinics ?
Thank you Jools for all the hard work. I echo what everyone else has said. I'd be more than happy to make a contribution towards any trials for RLS. Like you Buprenorphine has saved my life. Whilst I do still sometimes suffer with RLS in the evenings and at night, I can cope and the symptoms are much less intense.
I don't know if this will help others, but I had to really fight to get my consultant to agree for me to trial buprenorphine and thankfully he agreed. I did this by writing a long letter to him outlining how awful my day to day life was whilst suffering with such intense symptoms, lack of sleep etc. I did put out a post about what I had written a couple of years ago. I am being seen by a consultant at the Sleep Clinic at Papworth.
That's a great idea. Long, detailed letters setting out how RLS affects us on a daily basis.I'm sorry to hear you still get some symptoms. I discovered that I get zero RLS on Accord brand. With Sandoz or Morningside brands I get 2 hour's RLS from 8 to 10pm. Clearly those brands don't last 24 hours and/or they are not as strong as the Accord brand.
Maybe you could increase by 0.1mg to see if it helps?
I do sometimes take up to 600mcgs (occasionally 700mcgs). This does help for the most part. I also find a hot bath in the evening also helps settle them down. But at least they're not so bad that I'm standing up swaying from side to side and wriggling and pacing around like I used to. I guess taking 9 mgs of ropinirole every day for years and years has permanently fried my receptors! I do have RLS free evenings/nights several days a week so I can't complain too much as things are so much better than before and I'm much better off than most folk on this forum.
I use the Temgesic (Indivior UK Ltd) brand 95% of the time.
Quite a few people find that 800mcg covers their symptoms 24/7. It's still a very low dose. Mayo algorithm sets out the doses of opioids and Buprenorphine is 0.5mg to 6mg. You are only a smidgeon above the lower dose.
Thanks Jools. Yes you're right. My consultant acknowledged that my dose was still low. I'm going to keep playing around with the doses as luckily I've got some spare tablets. Mind you no RLS last night and I slept well. Long may it continue!
Thanks, but I can't set up a fund just yet. I'll make enquiries about a possible crowd funding where people get their money back if the target isn't reached. Or a lottery style competition.
In the USA, most experts are very familiar with Buprenorphine. It has a long half life of 23/24 hours and affects different opioid receptors than tramadol/oxy. That's why it works so well for those of us who failed tramadol and Oxy.Any Doctor familiar with the Mayo algorithm will know about Buprenorphine.
Drs Buchfuhrer, Winkelman, Earley, Ondo etc all prescribe it.
Kratom acts in a smilar way so if that has been alright, possibly methadone or Buprenorphine will not make bi polar symptoms worse. You would need to discuss fully with the neurologist and pyschiatrist. They will have experience of bi polar reaction to different opioids.
Well after all other drugs had failed and my legs were still severe and I was nearly going crazy with no hope in sight wonderful Joolsg & Sue persuaded me to be brave and ask my GP (in the south of England) for an opiod. He happily suggested oxycodon for me 5mg and thus far I have had 2 whole weeks with no rls.Thank you, thank you Joolsg and Sue and others for help.
I realise what it is like to wake feeling like a normal person. It is bliss.
I tried many drugs for my RLS without success. I thought I did not want to live any longer with my my severe RLS. Late last year I was prescribed Buprenorphine. It is the only drug that has helped me. I live in the US and it was prescribed by Dr. Buchfuhrer. Although it hasn't cured my RLS symptoms, I am finally getting much needed rest and sleep. Most nights I sleep 6-7 hours with some 8 hour nights. I also can now take a nap without discomfort. If you are struggling with RLS, try this drug. The downside is that my insurance does not cover the cost.
Can you share how you take Buprenorphine in the U.S. What form and what dose? I am only aware of Suboxone (now available as a generic) and Belbuca. Although they are the same drug, only Belbuca is authorized for pain. Suboxone only for Opioid Use Disorder. Belbuca is crazy expensive. I did the math and to get to the price per milligram of Buprenorphine you have to multiply the Suboxone price by 800. So, Belbuca is 800 times more expensive than generic Suboxone. You have to cut the Suboxone films into small pieces but that is a small price to pay for the huge cost savings. My RLS is controlled by 1/8 mg once daily. To achieve this dose, I cut an 8 mg Suboxone film into 64 pieces. One 8 mg Suboxone film is all I need for 2 months. There is a tablet form of Suboxone but the lowest dose is 2 mg which is 16 times more than I need. In its generic form Suboxone’s price for treating RLS is just a few cents per day.
Glen Brooks MD New York only recommends Subutex which contains only Buprenorphine no naloxone.
Suboxone is for recovering addicts the naloxone component blocks all opioids which is not good for emergency surgery and not necessary for the general public.
I break my Subutex into tiny pieces every night and only take what I require.
I would be more than happy to donate . Shumba helped me alot . I am also in the south of England and had used all the usual drugs and my doctor prescribed Bupromorphine. It's made such a difference .
I take codeine and pregabalin every night these drugs used to help but not anymore
My GP s know nothing about rls and I can’t get an appointment with a neurologist anymore I’m at my wit’s end with lack of sleep and at 84 I’ve just about given up I read all the posts on this site but most of it is above my head
The last time I asked my gp to contact a neurologist to give me a call was last November and to date no one has bothered to contact me!
That is just terrible. I get so angry that RLS patients are ignored and left to suffer when there are treatments. As Dr. Buchfuhrer says, 97% of RLS patients can be RLS free with the right treatment ( and decent doctors).I know there is a huge shortage of neurologists in the UK and with the increase in Long Covid, they are busier than ever.
Ask a family member to complain to your GP surgery on your behalf, setting out fully how your RLS affects you physically, mentally and socially. Keep a daily diary listing when you get RLS and how it makes you feel.
You may be in an area of the UK where your GP can give you a one month trial of Buprenorphine pills at night. 0.2mg starting dose for the first night, increasing to 0.4 or 0.6mg until the RLS is controlled.
Explain that lack of sleep causes heart disease and diabetes. Control the RLS and you avoid other illnesses.
Buprenorphine has been a godsend to my severe treatment-refractory case of RLS.
"or others, the side effects of depression / anxiety have made them switch back to other opioids. Several of us have countered depression/anxiety by adding a small dose of pregabalin at night."
I actually got onto Bup after the Methadone I was taking caused depression (which I had never suffered before). The Bup offers long effectiveness without the mood side effects.
That's good to hear. I have opioid induced anxiety with all opioids. It happened to me with Tramadol, Oxycontin and also kratom. Luckily, the wonderful Dr. Buchfuhrer answers questions quickly and he advised adding a small dose of pregabalin. 25mg every other night completely stops it.
I hope this is ok....I will change it if not. My daughter works for the company in the US that produces Suboxone (burprenorphine). I'm not very well versed in meds, but I believe they are the same. anyway, I passed on this thread to her to ask her if she knew anyone in the company who could assist in this venture to make it more available in the UK. please let me know if I need to ask her to delete the thread.
I just can't believe we all have to suffer to any extent with this disease....just unbelievable!!
That is very helpful Nona. Buprenorphine is readily available here but it is not licensed for RLS. We need to change the prescribing process so GPs can easily prescribe it for refractory RLS. Sadly, many UK GPs and neurologists will not accept the Mayo Clinic Algorithm. It's frustrating.
But every little bit of campaigning/ spreading info helps.
This is really, really excellent news Joolsg. I wish you every success in raising the money to get the research
In the US I have had the same level of success with methadone. I too had severe, refractory RLS, after augmentation on dopaminergic drugs. My neuro doc has me nightly on 5-10mg methadone + 2mg ER Ropinerol + .5mg Clonazepam. (Helps deal with the anxiety from taking an opioid). Very successfully for 1.5 years. I get an occasional breakthrough but just up my stage of methadone from 5 to 10.
Major challenge in the US is politicians in some states have gotten in the way of allowing Methadone to be accepted for RLS. Similar to your situation in UK with Buprenorphine. For the time being, Oregon has not gotten in the way.
My hubby and I are moving to Mexico in the next year to retire. My main concern is how to manage RLS while living there. I am encouraged that Buprenorphine works for so many and will add that to my list as I investigate options.
This is a conversation that needs to be kept alive until it has been achieved.
If Dr Walker is serious and would definitely put his energy and skills into the clinical trial then it’s up to us as a collective to run with the Baton.
No matter what country we from we can all contribute and benefit from research and implementation put in place by the medical profession in the UK.
Have you made any headway ?
And what do you need ?
I am back in Australia.
I am awaiting a phone call from a Parish councillor in the UK about a recent fund raiser that achieved a significant goal to restore an ancient church roof .
I am going to discuss a GoFundMe appeal and then hopefully we can all spread the news far and wide amongst family, friends, help groups etc.Dr Berkowski replied to my email and said any trials of Buprenorphine for RLS would also help his patients in the USA. It's good to hear the USA will take note of trials in other countries.
Here in the UK, they will not easily prescribe Buprenorphine unless it has gone through controlled trials acceptable to the licensing authorities.
Frustrating.
But hopefully, the gofundme appeal will be up and running soon, under a charity.
Hi Joolsg, I suffer from refractory RLS after 16 years on Pramaprexol and horrible augmentation. I am taking Tramadol currently, but had to increase the dose from 50 mg to 150 mg in six months, so I am concerned about augmentation again.
My current doctor would not prescribe Buprenorphine. I live in Florida. Can you recommend àn RLS doctor near me that is familiar with this medication and would prescribe it?
Also, do you know of a doctor that specializes in natural health methods (no drugs) that has been successful in resolving RLS through diet, exercise, etc.? I would like to try the natural approach first. I am just so tired of the anxiety, depression, and side effects of all the drugs I have taken.
If you are completely off pramipexole, opioids work very well. Except for tramadol which is the only opioid that also increases severity of RLS.
This is a UK website so I do not have any details of natural health doctors in Florida, but if you join the US RLS foundation, they have local help groups.
I do know of an excellent RLS expert doctor who can treat patients in Florida. He will do bloods and consider whether you need a n IV iron infusion. Iron infusions dramatically improve RLS in 60% of recipients.
Dr Andy Berkowski has telemedicine out of Florida and could see you very quickly. He is a top RLS expert and co wrote the Mayo algorithm. Excellent RLS blog on his website as well.
Thank you Joolsg. We are so lucky to have people like you , Sue and Shumba on this forum. Like many other sufferers of RLS I have learned so much reliable information and I too am feeling the benefits of buprenorphine. I am actually taking Temgesic and although it is very helpful it is not entirely covering my symptoms. However Dr. Bagary has said I may change to Buprenorphine but the problem is I am still waiting for him to write the prescription. I have waited now for over two months so surely it won’t be much longer. When I have been taking it for a while I will post an update on its effectiveness. Best of luck with all your efforts Joolsg and I would certainly contribute to such an worthwhile cause.
Thanks Bedith. Chase Dr Bagary. It's interesting that we all react to different doses. 0.4mg gives me 24/7 cover but I know others only get relief at higher doses.Also, I definitely notice a difference in brands. Accord Buprenorphine gives me full cover. Sandoz and Morningside brands of Buprenorphine or temgesic at the same dose, only gives me 22 hours a day cover.
My pharmacist believes me. I am definitely not imaging it. Without fail, if I try any other brand, 0.4mg doesn't cover my RLS.
It may be that you can increase your dose by 0.1 or up to 0.4mg or ask your pharmacist to try different brands.
Thank you for your reply Joolsg. Believe me I have chased Dr. Bagary, I have written two letters and have called his secretary numerous times. Initially when I asked for Buprenorphine he agreed but said I should wait 6 months. As the 6 months aren’t quite up, I think he is determined to make me wait. He did not give me a reason, and I myself can’t think of one which is why I have been requesting the change of medication before the time he stipulated was up.
I am hoping when he finally writes a prescription I will be able to take a lower dose as they seem much more effective than Temgesic. I am now taking 600mcg at 5 pm and 800mcg at 10.30 pm. Mostly this enables me to have some peace in the evenings but the symptoms wake me most nights at least three times and also I often get symptoms during the day. I’m not too keen on increasing the dose because I already feel rather sleepy during the day and don’t want to make that worse.
One day I will completely beat this horrible condition but I think I have it so severely it is taking a lot of effort. Best Wishes to you and may your days and nights continue to be peaceful
I've just looked up the half life of Temgesic and it's only around 5 hours. Similar to Oxycontin. That could explain why you're still having RLS each day.The half life of Buprenorphine is 23, 24 hours so no mini opioid withdrawals if you take every night at the same time.
I had no idea there was such a distinction between the two drugs.
I really hope Dr Bagary gives you Buprenorphine as,clearly, it seems to be much better than the shorter acting Temgesic.
Fingers crossed.
Since posting this, I've researched temgesic and buprenorphine pharmakinetic properties, and they are identical. Both have the same half life so should work the same. However, different brands do seem to work differently and slightly higher doses may be needed.
I get Buprenorphine 0.4mg and it's made by Accord. The Sandoz version is clearly not as strong because I get RLS from 8 to 10pm every night if they give me that brand.I honestly thought Temgesic was Buprenorphine but when I just searched, there are many articles saying not to prescribe short acting temgesic for chronic pain and to prescribe Buprenorphine instead. It says the half life of temgesic is 5 hours. Other articles say the half life of Buprenorphine is 23/24 hours. I learned something new today! I honestly thought temgesic was just a brand name for Buprenorphine.
I also.see that temgesic is made by Sandoz. I can't take their brand of Buprenorphine because it doesn't cover my symptoms for 24 hours.
So, you could ask for Buprenorphine made by Accord to see if it works better. Your pharmacist may be able to shed light on the difference between Temgesic and Buprenorphine.
Postscript. Since writing this, all research articles I've looked at show temgesic and buprenorphine have identical pharmakinetic properties and both have the same half life.
Thanks so much for this info Jools. I'll definitely speak with my pharmacist about this. My Temgesic is made by Indivior UK Ltd. It's nearly 3.00 am and my symptoms have woken me up so I'm off downstairs for a cuppa and a bit of a pace around! All the best.
Sorry for the long delay Joolsg, but I found an email that you can start a request for funding/info from Soboxone....of which Buprenorphine is the main ingredient. It is ... patientsafetyrow@indivior.com. Hope this helps!
hi, Joolsg, Do you take CBD to alleviate the nausea when taking Buprenorphine? Is it effective to alleviate the nausea associated with Belbuca, I need your advice. Thanks.
I took cannabis oil with 20% THC. In the UK, only available on private prescription.I took it every night for around a week, stopped & the nausea was gone.
How long have you been on Buprenorphine? The nausea usually settles within the first month.
Dr. Buchfuhrer recommends Zofran for opioid nausea, but it's only available from hospitals in the UK.
Hi, Joolsg, thanks for your reply, My story is very complicated, I had laparotomy on the 29th of March and sufferer from abdominal obstruction and readmitted to the same hospital and stayed there for almost more than 20 days. During the hospitalization, I was receiving heavy dosage of IV morphine and Dilauded to relieve the pain associated with the surgery. Coming home 4 days ago and found that the 20 mg of oxycodone no longer effective. After consulting with Dr B, I need to switch to neupro patch temporarily until Oxycodone is working again, But it took longer to get the neupro, in the meantime I am taking Belbuca 150 mcg twice a day to relieve the uncontrollable RLS, The nausea is so unbearable to me and also Belbuca is not working like used to, I called CVS today, fortunately they get the product tomorrow afternoon. So, according to Dr.B I will proceed to take Neurpo patch temporarily to wait until the oxycodone is working again. Certainly, I am very dreadful of the augmentation from the Neupro, but I have no choice right now. Sorry about the disorganized writing due to post surgery pain and uncontrollable RLS.
I'm so sorry to hear this. Surgery can trigger RLS, as can coming off high dose opioids used to control pain post surgery.I think it will settle, but not for a few weeks.
The nausea can be controlled with Zofran. Dr. B can prescribe that for you in the USA. Here in the UK, only hospitals can prescribe it.
Cannabis oil with 20% THC controlled my severe nausea. I took 0.2ml at night and 0.1ml every 3 hours during the day. It worked almost immediately for me.
Many say it settles after 7 to 10 days.
Hopefully, using the patch for a week or two, until the oxycodone or belbuca starts to work, will be an effective solution. You're under one of the best RLS specialists in the world.
Hi Jools, thanks to your advice, I have successfully controlled my RLS with Suboxone, after consulting with Dr. Berkowski.
I currently take .33 mg (1/6 of a film) about two hours before bed. Sometimes I get RLS while on the couch (watching TV or reading)before I take the Suboxone. Sometimes, if I eat or drink trigger foods, I increase dose to .5 mg.
Is there a reason you take half of your dose earlier and the other half immediately before going to bed? I believe you said you take .2 mg at 9 p.m and then another .2 mg at midnight.
I initially would get breakthrough RLS around 8 or 9pm while watching TV. So, I thought I'd try splitting the dose to 'extend' the cover. Buprenorphine has a half life of 24/25 hours but the main 'hit' or peak effect is in the first 8 hours.As soon as I split the dose, I no longer had any breakthrough RLS.
No idea why it worked, but I get zero RLS, night or day.
It is complete and utter bliss after over a decade of torture.
I just wish UK medics would realise the extent of suffering and use Buprenorphine more often. At low dose it's highly effective.
Most of us are middle aged or older and we are not drug seekers. They are happy to dole out dopamine agonists like sweeties, totally unaware of how dangerous they are.
Thanks for the quick response. I will try splitting the dose and see how it goes.
Do you ever need to take more than the .4 mg, such as if you eat a trigger food or drink something later at night? If I drink alcohol, it seems I need to increase to .5 mg.
Hi Sheelaghj, I happened to see your remark. Jools takes bup pills, 0,4mg a day (0.2mg early evening, another 0.2mg at bedtime). I take bup patches. The amounts are nit directly comparable as absorption is different through the skin and a constant supply as through the patches is different from the peaked supply by the pills.
Anyway, I get virtually no RLS on 5 mcg/h patches, but that is a low dose. Most people in these patches need at least (10-)15mcg/h patches. What dose did you get?
I am on patches 10 mcg for past two years, with varying amounts of gabapentin. I have found i need low dose gabapentin, limits waking when I don't have I have pain, I have put this down to periodic leg movement. Always had brake through pain day 5/6 to +2 days on new patch (takes three days on patch for body to build up to standard concentration). I am currently trialing 15mcg buprenorphine but am going to ask to switch back to 10mcg but replace from day 5 (a number on this forum have experienced lesser RLS relief from day 5 of 7 (in theory) day patch). Patches have been awsome from 24/7 RLS (augmented on sifrol for 10 years) even with breakthrough I still get a reasonable amount of sleep on those nights.
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