I would like to express my thanks to Shumbah for sharing her story about Buprenorphine after years of suffering severe, refractory RLS.
I asked my neurologist, Prof. Chaudhuri if he would let me try it months ago and he said he had no objections, but my GP had to agree to prescribe and monitor. I was scared to ask as I expected a refusal.
I joined a new GP surgery last year as my previous GP was the one who suggested drinking Milk when I was going through hellish withdrawal from Ropinirole.
I have failed gabapentin, tramadol, Oxycontin and pregabalin and had literally reached the end of the road.
The Oxycontin and pregabalin just didn't stop the RLS and at my last appointment with Prof. Chaudhuri my RLS severity score was 36/40. Life was literally becoming unbearable.
Cannabis helped enormously, giving me 3 hours of uninterrupted sleep but I was still walking the boards for 2-3 hours every evening and being woken 3 or 4 times a night.
I had a telephone appointment with my new GP surgery a month ago and the young, female GP readily agreed to prescribe Buprenorphine on a one month trial basis. I wish I'd asked earlier.
Long story short- IT'S BEEN MIRACULOUS!!!
For the last month I have had ZERO RLS. I have slept 8 hours every night for the first time in decades. I'm in shock.
There were teething troubles. I started on too high a dose of 2 x 0.4mg. I slept 9 hours but woke with very severe , overwhelming nausea. I reduced the dose over the next 4 days to 0.3mg. The nausea was debilitating and Dr. Buchfuhrer advised adding Zofran but in the UK Zofran can only be obtained on a hospital prescription. I then remembered that Cannabis is used for chemo patients suffering nausea so added the cannabis back at night. It completely stopped the nausea and by week 3, I stopped the cannabis and am still nausea free.
At week 4 I developed panic attacks but I was expecting this as it happened with Oxycontin. My GP added a small dose of pregabalin (50mg) to counter the panic attacks and it has worked. I will reduce the pregabalin in a few months as I adjust to the Buprenorphine.
So, if other medications like gabapentin, pregabalin and other opioids have not worked for you, and you have SEVERE RLS, do consider asking your GP for Buprenorphine. If it helps, please show them my interview with Cannabis Health Magazine. Link attached.
Jools, I am delighted. You are among the many people on here who mot only suffer from severe refractory RLS, bit also from another major ailment. And you so much need some quality sleep. Even when you didn't get you extremely kindly shared your experiences and acquired knowledge with this community. You were among the few who by sharing your experience taught le about about augmentation, the hell of it and how to deal with it and overcome it. As you kept on doing to te almost daily new influx of people obviously suffering augmentation. I hope you stay with us and continue your good and very important work. And most of all, that this buprenorphine / cannabis combination keeps on working for you forever. And that no new side effects develop. I am just so mighty pleased. And I also hope that by sharing your story many other will benefit. Thank you .
I knew that cancer patients use it for nausea so it was a light bulb moment. I know people experience nausea. I couldn't eat for 4 days. Zofran apparently helps but reading side effects was enough to put me off I'm lucky that I'd been using cannabis oil for over a year so had it available. I only used it for 3 days and by that time, 2 weeks in, my body had adjusted to the Buprenorphine.
If you can get medical cannabis oil, it really stopped the nausea overnight. If in UK use project twenty21 and you could then try it again. After 5 years of trying tramadol, gabapentin, pregabalin and Oxycontin, this is the first time I've been RLS free since the first few years on Ropinirole.
I’m glad you shared Jools and I’m glad it’s working. You deserve this, particularly after your unstinting support on this platform over the past few years. Your advice has helped and encouraged me many times.
Thanks so much. I want others suffering similarly to benefit. If they've failed the other drugs like pregabalin, gabapentin, tramadol and Oxycontin, it's worth a try.
Awesome to read and really happy for you. I will start building off prami in the next couple of months and hope to get to where you are now. Enjoy your “new life” and be proud of the progress you made, for it wasn’t easy and you didn’t give up!
Thanks Dizzy. There's hope for others. Many do very well on pregabalin, gabapentin or Oxycontin but they never helped me much. Hopefully doctors will start to learn more about this disease, augmentation and the drugs that help.
Fabulous news. I'm so happy about this. At last you have relief. Your experience is similar to mine. I was at the end of the road. Cannabis had stopped working. Also Kratom and Tramadol. Gabapentin and Pregabalin had had little effect. Pramipexole augmented nightmarishly, and was so bad I thought I wouldn't make it. Oxycodone reduced me to a zombie and didn't work. Then, as a result of Shumbah's post, I got on the track of Buphrenorphine and after a massive struggle with health pros got a prescription for 200 mcg and my life was saved. The dose is too low and I'll only be able to ask for more when I see the neurologist in January. Nevertheless it's a revelation and I'm happy again. I no longer dread the night.
Thanks to you too rkatt. Everyone sharing their experience has encouraged me to ask for it. I had mild RLS on 0.2mg (200mcg) but I cut a tablet and added the extra 0.1mg and it stopped ALL RLS, day and night. You may find you only need an extra 0.1 as well. Fingers crossed you get more. Would your GP be helpful? I sent mine the email from Prof. Chaudhuri saying he had no objections to Bup and she asked me what dose I should try....
This is such lovely news, Joolsg. Long may your relief continue!
I too managed to speak to a very understanding GP in February. After augmentation on da's, pregabalin not working and gabapentin and 60mgs codeine only giving very light relief, I contacted my GP practice with an 'I can't cope much longer' phone call. I explained that codeine was the only drug that gave me any relief but I was only 'allowed' 60mgs. He immediately prescribed me up to 240mgs daily in 60mgs doses, 4 hours apart. I have gone from 36 out of 40 severity to just the odd twinge now and again and when this happens I know I have the back up of codeine if I need it. I now take 30mgs codeine at 18.30, 300mgs gabapentin at 19.30, 300mgs gabapentin a t 21.30 and 60mgs codeine at 22.30. Sometimes I wake between 3 and 4 in the morning with RLS so I take another 30mgs codeine and usually sleep until 8 am. What a difference and understanding GP can make! This drug regime has changed my life ..... although I do keep wondering if one day the bubble will burst. It seems too good to be true.
Thanks Manerva. I'm even more determined now than ever. There are so many like me who still have really severe RLS and I want them to find a similar solution.I certainly won't be disappearing.
Jools, your post has put a big smile on my face! I'm so pleased that the buprenorphine is finally working for you after a bit of tweeking and a shaky start. Long may it last! Hurrah to you and to Shumbah! 🎉🎊
I would just add that I also had a bit of a shaky start when I began taking buprenorphine but things resolved themselves once my body adjusted to it. It seems that this may happen to some people when starting to take buprenorphine.
Hi Jools. Thank you so much.Your post and your link are so well written and genuine sounding, just perfect.
RLS is described so perfectly in way that surely the most reluctant and unbelieving professional and also family / friend, that I believe it is and will be an extremely useful resource for us all to pass on for a long time to come.
I so want to have the courage to ask for the same and for it to result in the same effect.
I was the same. I didn't dare ask for it in case they refused. I'm so glad I did. To be totally RLS free for the first time since Augmentation kicked in back in 2013/4 is just making me so happy. My GP is an angel and has literally saved my life as I'm not sure whether I could have lasted another few years with such severe RLS.
Hi Jools so glad i came to have a browse today and saw your post, i am really happy for you to find at last something which works for you. I was given zofran by my doctors via the hospital when i was in hospital in alot of pain from my gallbladder problem they gave me cocodamol for the pain then morphine i threw up on the morphine. I had no problems with taking it, and still got some, they gave me a pack of 30. But there is a anti-nausea we can get here by prescription and that is Domperidone its RLS friendly. I have had that before too with no RLS problems. might be helpful for some one who cant get their hands on Cannabis.
Oh thanks Elisse. I am still so grateful to you and Pippins for helping me through augmentation and withdrawal from Ropinirole 5 years ago. It's a shame it's taken 5 years to find something that stops the daily RLS! But now time to pass on the word to others who are still struggling to find something that helps. Another med in the arsenal.Take care,
Glad Pippins and myself were around at the time . I spend alot of time on a fb group where too many people are augmenting and dont have a clue or they do and scared to come off their DA or dont know how to. I know this forum is in good hands I know i dont come on here like i used to but i am helping others who are in a group which doesnt have enough knowledgeable people to give advice. That med you are taking has reached the FB group i am on. think someone from here posted about it, so the message is getting around.
You have done great work on this forum in the past and obviously are still doing that on that fb group. I really appreciated your contribution here, Elisse, as like Jools, your replies were of tremendous worth and help to me. Keep up the good work for the fb group. A big thank you 🙏 on their behalf. People like you are invaluable. Lotte
Hi Jools my name is Rob, I’m new to this horrible leg moving. my brother had substance abuse issues in the past and suboxone worked great you can take 1 pill that lasts 24 hours, and he never felt high it kept from not getting high. My point is have you been taking itFor RLS? If so, how is it going? I’m going to see if I could get my doctor to give it a shot how ever I thought the doctor had to be licensed to prescribe it
Yes I take it for severe refractory RLS. I was on Ropinirole for 15 years and suffered really severe augmentation and traumatic withdrawal. Tramadol and gabapentin didn't help then I tried Oxycontin and pregabalin. I was on oxy and pregabalin for 5 years but my RLS severity score was still 36/40.I had an Iron infusion in 2019 and my ferritin shot up to 785. Still severe RLS.
When medical cannabis was legalised in 2019, I applied and was one of the first patients to get it in September 2020.
That allowed me 4 hours sleep for the first time in years. However, my RLS was still 36/40.
Shumbah posted of her success with Buprenorphine for severe refractory RLS in 2020 and several other members of this forum managed to get it prescribed here and in Australia. It has been available in the USA for a long time.
I asked my neurologist, Prof. Chaudhuri, about Buprenorphine 5 months ago and he was not very keen but I pushed and he replied that he had no objections but my GP had to prescribe and monitor.
Many GPs have refused to prescribe ANY opioids for RLS but luckily, my wonderful GP agreed instantly.
It's been 6 weeks now and I have had ZERO RLS night or day and am sleeping 8 or 9 hours every night.
Prof. Chaudhuri was stunned and has agreed to do trials in the UK if I can raise the money.
That's my next campaign- raising between £50-100,000.
Sadly, the NHS and NICE won't licence Buprenorphine for RLS without a UK trial. They don't acknowledge US trials so Dr. Winkelman's opioid study won't help us.
I have never had substance abuse issues and am glad your brother is getting help for his issues.
Thank you for the response would you mind telling me the dose you are taking. Luckily it’s a lot easier to get the drug prescribed hereIn the US. Im trying to accept I
Have chronic severe RLS and have to go to opiates. I have tried methadone and tramadol but the side effects were
Horrible I couldn’t hold down food. Suboxone is. A low grade opiate and I feel
Like that would be best of all other drugs. I feel like a Guinea pig taking so many drugs.😞ambien still helps
Me at night which is a god send and it works with marijuana. I can’t believe there is no options out there that could work
Long term other than opiates. Even when I tried the opiates they worked
But I would have needed more. Even on the opiates I was still severely depressed, I went from being on no medications
To playing trial
And error with all the worst drugs you can think of😞 I feel I will never be able
To get back to living life. But anyway sorry to bore you with my story. Please give updates if you could on your process I’m going to see if I could give the suboxone a shot
I started on 2 x 0.4mg and suffered EXTREME nausea the next day. I then reduced to 0.4mg and then 0.3mg by using a pill cutter. The nausea continued for 10 days and I was about to stop taking it as I just couldn't eat or function I felt so ill.I then remembered my medical cannabis oil ( 20%THC) and that chemo patients use it to stop nausea.
I took 0.4ml at night and on the 11th day the nausea had gone. I think it was a combination of the cannabis and my body finally adjusting to the Buprenorphine.
Then on day 16 I developed panic attacks anxiety, which I was expecting as it happened with Oxycontin at first.
I added 50mg of pregabalin at night and the panic attacks/anxiety have gone.
In about 2 months, I will slowly reduce the pregabalin and hopefully the panic attacks will have stopped.
I take Buprenorphine without Naloxone - I think it's called Subutex in the USA.
I have tried all other drug options so this was the last resort for me.
Please keep me updated I’m going to see if my doc will prescribe. I’m still dealing with such depression in the fact that my only options are really opiates it’s crazy one minute I’m on no medications and within a year I’m a guinea pig for trial and error drug after drug. Your right I have medical marijuana for nausea it does the trick. How do u feel in general are you feeling normal or still some drowsiness or just having the feeling of you know you brain feels off
I am still in a state of euphoria. I had severe RLS - 2 to 3 hours every evening between 8-11 so I'd be walking up and down. Then the Oxycontin I was taking and cannabis would give me 3-4 hours sleep and after that I'd be up 2 or 3 times with RLS.I had reached the stage of logically and rationally planning an exit strategy.
Shumbah posted about Buprenorphine and I knew she had, like me, been on all the meds available for RLS and still had severe RLS.
The Buprenorphine doesn't cause depression ( I've never had depression or anxiety, except opioid induced panic attacks).
I feel sleepy in the early evenings despite sleeping 8 or 9 hours every night.
So, for me, so far it's been brilliant.
However, you say your only option is opioids. That's not true.
There are 4 categories of drugs for RLS and opioids are the last option after the others have failed.
Has your doctor taken blood tests? The majority of RLS sufferers benefit from raising serum ferritin above 100, preferably 250.
They then don't need meds
It seems you may be at the very early stages of RLS so don't consider meds until you've first raised serum ferritin and eliminated all triggers like anti depressants and anti histamines.
Also, many people find changing their diet eliminates all RLS.
I have been down these routes and that's why I'm on opioids- nothing else worked.
I’m trying the diet thing now, unfortunately my RLS is chronic even during the day. I tried all the anticonvulsants sleeping pills only work for so long benzos help for a brief period. Methadone and tramadol made me so Nauseous and sedated I couldn’t function regardless that’s why I’m hoping buprenorphine can help. Did you ever do the iron transfusion? I had low ferritin but with supplements I got the number up to 99 with no reduction in symptoms so we never did it
I wrote to St George's haematology department attaching research papers. They felt the evidence was compelling and told me to get a referral from my GP. Sadly didn't work for me, but it does for 60% so worth pushing for.Sidestep your GP by writing to the nearest large teaching hospital.
VERY VERY important to ask for SUBUTEX not Suboxone
Suboxone you have to stop 2 weeks prior to any surgeries. If you were in a car accident all pain meds would be blocked by the SUBOXONE because the NALOXONE blocks all pain meds even during anesthetiser.
I have not been online much recently and am only seeing this thread now. I am so delighted that at last you are getting this wonderful respite. Thank you for posting. It's great to think of you enjoying good sleep and a peaceful body. It is uplifting also to read the appreciative comments for all your work on here. You fully deserve everything that has been said and it is lovely to see the high esteem in which you are held being vocalised.
You really are unstoppable. I can't believe you are now setting about raising money for research. We are so lucky to have you.
It's also very useful to read about how you managed the side effects as these tend to be problematic for me also.
I am just one of many trying to get more teaching of this common disease.Thanks IV.
I did nearly give up on Buprenorphine as I felt so ill but it really was the last chance saloon for me- that's why I persevered as there are no other drugs.
I just have no idea why there is no research for new drugs- when I compare it to MS research - RLS is in the dark ages.
We just have to keep campaigning and hope everyone starts to join in.
Thanks Shumbah. Prof. Chaudhuri was so shocked by the results that he's agreed to do a trial but the UK need NHS and MHRA approval for the trials. He's asked me to raise the money (£50-100,000) so I'm writing to all the grant and funding places I can find and the MS charity.Sadly, RLS UK is a tiny charity funded by £15 a year membership, and hardly anyone contributes, despite this forum having 14,000 members. The US foundation charges $35 and has a much larger membership.
It's ridiculous that the UK will not accept research from the USA.
Our Facebook group told me my information had no American was off no relevance.
Maybe that is why Professor Winkelman’s is taking so long as I said to him I would like Australia and the UK included in the study he said it would cost about $100,000 US dollars.
There are quite a few UK and Irish people who are part of Dr. Winkelman's opioid study. I'm one of them. The US rls foundation is funding his study but sadly, as it's carried out in the USA, it will not be accepted by Australia or UK as they have their own statutory bodies that have to approve the study. The NHS and MHRA will approve/licence a drug for RLS if a study/trial proves its effectiveness.Prof. Chaudhuri is regarded as the top UK RLS expert because he's the only neurologist who has shown a special interest in it and written many research papers about it.
However, he has been reluctant to prescribe opioids in the past so the more of us who report positive results to him the better.
I will keep searching for grants/funding for him to do the trials in the UK.
At least he's now open to the idea of Buprenorphine, which is a great first step.
Hi Joolsg, I read your success story about both Buprenorphine and cannabis. I'd like to know what brand of Cannabis your are using for sleep and what is the name of it? Thanks.
I have now stopped using the cannabis because the nausea caused by the buprenorphine has stopped and I'm sleeping 8 hours every night.The brand I used was Althea Champlain cannabis oil with 20% THC prescribed by the Medical Cannabis Clinic in the UK. I think most cannabis oils with 20% + THC will aid sleep. It used to give me 3 to 4 hour's deep sleep when I was on Oxycontin and pregabalin.
hi, Joolsg, I just received my Belbuca 75 mcg and would you please instruct me how to take it now, I have been taking oxycodone 5 mg daily at night. Do I switch to it directly from oxycodone? I am not able to book an appointment with Dr. B right away until later this month. I have CBD and THC ready in case of nausea side effects and would you please advise me any other side effects besides panic attacks you experienced. Thanks in advance for your reply.
I switched straight over from Oxycontin to Buprenorphine. However, you appear to have been given a patch rather than pills.I'm not familiar with how the patch works but imagine you place it on clean skin and keep it on for the time stated in the instructions.
You have been given the lowest dose. 0.4mg of Buprenorphine is roughly equivalent to 30mg of Oxycontin so it seems you have been given an equivalent dose.
If you experience nausea, eat little and often and it usually wears off within a week. If not, ask for Zofran or try medical cannabis to stop the nausea. Mine disappeared after 10-14 days.
Hi halperinchen, I believe Belbuca is a patch that you put inside your mouth to dissolve? If you can't talk to dr Buchfuhrer (I assume he prescribed the patch) you can always email him for instructions; he usually replies within a day.
And, as Joolsg said, a clean swap. I did the same. You will notice soon enough, as the buprenorphine administered this way works pretty quickly, in about 1h (max 1.5h). I hope it suits you!
I'm so happy for you. It's a horrible illness we have which is not recognised. At the moment I'm doing fine with pregabalin and hope it lasts a while. It helps a lot to hear your story as it gives so much encouragement. I listened to your interview and you were very patient with the guy, I enjoyed listening to it and also learned a lot. Thank you for all you are doing to help us.
I really hope the pregabalin works well for you. It's a case of trial and error to find the right combination of meds for the right person.It's good to know there are other options out there. Thanks for your comments- I went a little crazy fuelled by anger at the lack of knowledge about this disease. Next step will be a demonstration outside The RCGPs and the ABN, maybe involving chaining myself to the railings.
It's just madness that we know so much more than most neurologists! How can such a common, serious disease be completely ignored??
I'm having a breakthrough of rls tonight.. I was surprised as I've had 5 lovely nights.All of a sudden my usual leg starts .I had taken the usual 300mg. Do u think I should go to 400, it's even difficult writing this as I keep wanting to move. Here it goes again.I can't understand why. I didn't do anything unusual. I've just taken codeine. I hope I won't be trading the boards all night
I took it for granted you were on Buprenorphin - that's what the thread is, So I would not have necessarily advised increasing the Pregabalin, as you are on a high dose.This mixing of subjects midstream is confusing. And can lead to incorrect advice.
Oh no. It can happen though. As Madlegs suggests, maybe something you've eaten or drunk could have triggered it. Do some yoga stretches and squats. 300mg of pregabalin is high enough, I wouldn't take more. It's probably a one off blip. Leg stretches against the wall, massage & a hot bath. Hopefully it will settle as the pregabalin takes effect.
Also, it's VERY early days after getting off Mirapex. It can take months to settle. It took 6 months for me to find a combination that gave me around 5 hours disrupted sleep. The D1 receptors can take ages to calm down. You've had 5 good nights so that will happen again. Adding codeine is probably better than increasing the pregabalin as 2 meds at lower dose are often more effective than one at a higher dose.Also ensure your ferritin levels are up as that can help flare ups. Sending positive thoughts your way.
Not so good even last night. I took Kratom which did nothing then half an ambien. Im not sure whether I slept or not. I had to get up early as my 4 grandchildren are coming for lunch.
It's horrible isn't it. Years on DAs and then Withdrawal really messes up our dopamine receptors and it can take months before they start to settle/recover.I just wish doctors would stop prescribing them.
Some people quickly find an alternative med that fully covers their RLS. It took me 5 years of severe, nightly RLS before I had success with Buprenorphine.
Dr. Buchfuhrer also mentions that many people do not seem to respond to the Alpha2Delta ligands ( pregabalin, gabapentin and Horizant) after being on Ropinirole or Pramipexole. And it seems that this applies more to women than men.
You could be one of them.
If the pregabalin doesn't work after another month, see your GP and ask to add a small dose of opioid or alternatively, switch to an opioid.
The Mayo Clinic Algorithm can be printed off and shown to your GP.
In the UK, both hydrocodeine and Targinact have had small trials for RLS and so the GP is more likely to prescribe these.
Thanks. I just hope it works. I live in Greece so I dont think they will prescribe anything like an opioid. I suppose I could try a pain clinic as I have rotator cuff problems and that is what they gave me tramadol for. The neurologist I saw last week said she wasn't allowed to prescribe opioids. How long should I persevere with pregabalin. I read that some people take up to 450mg.
I'd wait another month. Just a thought. If you're taking tramadol for your rotator cuff, that could be causing augmentation. Tramadol is the only opioid that does so, especially when you've augmented on a Dopamine agonist. Tramadol is a synthetic opioid so maybe your pain clinic will switch you to codeine, Oxycontin or Buprenorphine?
I only take tram very occasionaly maybe once a week. Last night I felt so downhearted. For the first time in all these years of having rls I just broke down. My husband was trying to help but I cried and cried. I thought I would never be without this curse. The pregabalin was also making me put on a bit of weight although it's only about a week since I started it. Anyway I eventually calmed down. Tried to think reasonably. I took my pregab at 8 and then before bed a level teaspoonful of Kratom. I didn't want to risk a night of no sleep as the previous one. I also took half an ambien. I slept immediately at around 10.30 but I woke at 2. I took some more Kratom and slept until 8.30. I feel better today but upset that I may have the rls that can't be helped. I know my doctor here won't give me anything stronger. I just hope the Kratom keeps working. Sorry to be such a moaner but you are the only people I feel I can open up to. Thank you
That is DAWS. I was in a terrible state for about a year after getting off Ropinirole. I had never suffered depression, anxiety, panic attacks, low mood until after I went through augmentation and withdrawal.Dopamine agonists completely mess with your brain and coupled with the lack of sleep , it's not surprising you are feeling so low.
I found it helped to accept I would have issues for months.
It will slowly improve.
Pregabalin causes both water retention and a dramatic increase in appetite. I put on weight with it. Just be aware that you're probably eating more often and more carbs so watch what you're eating and it will level off.
As the weeks pass, your RLS will settle more and your body will get used to the disturbed sleep pattern.
Low doses of 2 meds (pregabalin and kratom) often work better than one med at higher dose.
Thank you. It helps a lot to know how long it will take. I can accept that and move on. Exactly what is DAWS and how is it different from augmentation? I never know how much Kratom I should take. Is a level teaspoonful too much? And then when I wake up another. Did you manage to lose the weight. If I put on a kilo per week I'll be a balloon before Christmas
It is still miraculous. I keep having to pinch myself. I no longer dread the evenings. I've got my life back.I'm now on a mission to get Buprenorphine prescribed to all those still suffering nightly. I remember Prof. Chaudhuri saying to me that the best I could expect was 4 or 5 hours disturbed sleep. Dr. Buchfuhrer was horrified by that statement and said any neurologist saying that was not very knowledgeable about RLS.
It is time for us all to become militant and demand better training and treatment. There are so many people in their 70s and 80s reporting on here that they are unable to stand their nights. They're all augmenting on Pramipexole or Ropinirole and their doctors have no idea how to help them . It is a time bomb.
I really hope you can get off Pramipexole safely and without too much suffering.
There is definitely hope. Pregabalin seems to help many after the DAs but if it doesn't work, there are several opioids - Oxycodone, Oxycontin, tramadol, Oramorph, codeine and now Buprenorphine.
The side effects can also be resolved. All mine are now settled/ controlled.
So happy to hear this.Just finished reading the article (with your interview).
The most annoying thing about RLS is the lack of knowledge, causing doctors to prescribe wrong stuff, but also that we have to fight for what we want.
Combine that with the fact that there is no single solution that works for everybody and it gets pretty hard.
So I really applaud your efforts. Not only on this forum, helping individuals, but also your persistency in getting RLS known to the world, all the while battling it yourself.
Thanks DizzyDb. I was helped off Ropinirole by the knowledgeable people on this site 5 years ago so I'm 'paying forward' as they say. There are so many on here who spend hours giving advice and information. They're all great.You will make it through. Slow and steady.
I remember Prof. Chaudhuri saying to me that the best I could expect was 4 or 5 hours disturbed sleep.
A well known neurologist here in India just told me the same a few days back. I had gone to discuss about opioids and this was the response. I am terrified of what is going to happen in the future.
It's a terrible thing to say and I agree with Dr. Buchfuhrer; any doctor making such a statement clearly doesn't have the necessary knowledge to treat severe RLS. 😕
I started on Temgesic a year ago and the results, like you, were immediate and amazing. I slept through the night and my wife said I was a new man! However, a year on, I am now on two tablets and 300mg Pregabalin but I am either unable to get to sleep or am waking up due to the jerking of my body. I am also very itchy, a side effect of the opioid, which does not help in getting to sleep. I'm only getting about 4 hours a night on average and am even having difficulty concentrating as I write this. I know that the effectiveness of the opioid wears off after time and so I'd appreciate it if others could pass on their experience of being on Buprenorphine after several months.
That is not good news, RLSofManyYears. You don't say, but has anything happened last year that may have worsened your RLS? Also, I remember from the results of John Winkelman's opioid registry, that people of adjust their dose in the first year of use. Some also after the first year, but they are a (small) minority. Could it be that you don't take enough? I don't want to urge you to simply take more, I hate taking meds myself and always seek for the lowest effective dose. But over the past few years I learned that it is not always wise to stick to a low and ineffective dose.
My own experience with buprenorphine is that I still take the same dose in the evening. And I sleep very well on it. Actually, the buprenorphine seems to make me slow towards lethargic and I almost every day need a long afternoon nap. I don't know whether that is withdrawal from my morning dose or side effect of the buprenorphine. Sedation is a common side effect. We are all different!
Nothing has changed to make the RLS worse. I take my two tablets (4ug in total) one hours before gong to bed. In discussions with my GP we both agreed that I should not go beyond the 2 tablets per night. The problems will be the increased side effects e.g. difficulty going to the loo, sleepy in the morning, further itching, etc. I think the main one would be the increasing dependence on an opioid which the medical profession do not want.
Oh no. That's worrying. Did the itching start straight away? When did you add the pregabalin? Was it because the Buprenorphine stopped working?On the cannabis, my price is locked in at £199 for 100ml because I joined at the beginning of the project. As I used 0.3-0.4ml a night, it worked out at about £2.50 a day. I used Project-twenty21.
But I think it all ends up being prescribed via The Medical Cannabis Clinic.
I stopped taking the cannabis when I started Buprenorphine but took it again for 3 nights to stop the opioid induced nausea.
The itching started when I went on to two tablets per day. I've been on the Pregabalin for several years now and any time I try to reduce it the jerking gets worse. I was prescribed it by my consultant to alleviate the effects of augmentation. It looks like I will not be one the cannabis then. Anyway I don't suffer from the nausea side effect, I'm glad to say.
I've just looked through all your posts and have seen that you have been on 300mg pregabalin for a long time and augmented on all of the DAs.The temgesic stopped working and you went back to Ropinirole recently.
I suspect that this and the pregabalin may be the issue.
Temgesic 2 x 0.2mg is still a low dose so there is the possibility of adding another half pill. Try splitting the dose. Take one pill at 10pm and another just before you hit the pillow.
Pregabalin may be a problem. After augmentation on DAs, it not only doesn't seem to work for many people ( Dr. Buchfuhrer sees thousands of patients and that's his experience) BUT pregabalin can also cause augmentation. There will be doctors who dispute this but there was a study in 2014 where pregabalin DID cause augmentation in several of the participants. Also, Alison7, a GP member on here is convinced it caused augmentation for her after several years and I too found my RLS moved to my arms again when I'd been on Oxycontin and pregabalin for around 3.5 years. I reduced the pregabalin over 9 months and the R in my arms and hands settled.
So, if I were you, I'd slowly reduce pregabalin by 12.5mg a week, slowly increase Temgesic by 0.1mg, stop all dopamine agonists, and for the Opioid itching, take a safe anti histamine like loratadine or cetirizine.
There will inevitably be a crossover period where the RLS flares up, but hopefully, it will then settle again.
Also, try sending an email to Dr. Buchfuhrer at
somno@verizon.net
Detail everything you are and have takrn over the last 6 months and see what he advises.
Well someone's been doing their research - thank you. I've actually been off the DA that I took, in an effort to get the Temgesic out of my system before going back on to it, for a couple of months now. That exercise did not work as I thought it might.Re the augmentation, it was when I was on 3.5 - 4mg Ropinirole that I started experiencing augmentation with strange feelings in my arms and twitching/jerking earlier in the day. My consultant neurologist prescribed the Pregabalin to counter the symptoms in my arms (rather than to counter the RLS itself). I have tried to reduce from 300mg in 25mg steps but only managed to get down to 250mg, after 2 weeks, before giving up due to the stress from the lack of sleep.
Re itching, I'm taking the antihistamine Desloratadine at night and I think it only helps me moderately. I still itch a lot, even during the day.
Bummer. Definitely email Dr. Buchfuhrer. He may be able to provide new insight.Pesky dopamine receptors take months to settle after any whiff of a DA.
Try splitting the Temgesic dose, taking the last dose just before you hit the pillow. As it has a long half life, it may stop the night time twitches/jerks.
Also, re the cannabis, I checked the price and it was £199 for 50ml. Rather expensive! How does one go about getting it from the Medical Cannabis Clinic?
drugscience.org.uk/project-... applied in Sep 2020 and paid £99 for initial consultation with paun consultant Dr Nayee. The 100ml of oil cost me £199 for 100ml which lasted ages and worked out £2.50 a day.
However, I haven't used it in over 4 months as the Buprenorphine has stopped all RLS so I now sleep.
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