I came across this video on Dr. Christopher Earley's profile page on John Hopkins Neurology website. They have reformatted their website, but much of his research links are available at the bottom. If you follow the link in the video to YouTube - there is a "more" button that will allow you to access a transcript with timestamps. It appears to be very current (10 mo. old), and it does have many patient case studies on Augmentation on DAs.
Augmentation Video : I came across this... - Restless Legs Syn...
Augmentation Video
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DicCarlson
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Thanks!👍💚
That is excellent DicCarlson.Fascinating that Dr Earley says EVERYONE on dopamine agonists WILL augment.
That definitely is what we have seen on this site. There are OLD studies saying around 70 or 80% will augment.
I bet that if anyone bothered to do updated, large scale studies, they would prove Dr Earley correct.
It's why dopamine agonists should be banned and only used as a very last scale resort, when iron, iron infusions, other classes of meds have failed.
I also notice that his max doses are lower than the FDA max and the UK NHS and NICE max doses.
Everyone should watch this video.
Dear Joolsg, Just watched the Dr Earley video and if I understand it correctly there is no point once a patient is augmented on DAs that you can stop augmentation without a 12 day Detox scenario? The use of pregabalin/gabapentin, methodone, oxycodone etc are really only stop gaps and delaying the Detox process if you want to be free of RLS.
Do you think he is correct?
Best regards Davchar
Dr Earley follows the brutal 3 week withdrawal from Ropinirole and a 14 day drug free period. He believes it's the only way to down regulate the dopamine receptors and see the true base level of RLS.He may have a point, but most other experts think it's far too difficult to withdraw that quickly and they think most people cannot bear the 14 day drug free washout period.
I suspect they're right.
Augmentation means drug induced worsening of RLS caused by Ropinirole.
That can only be stopped by getting off Ropinirole completely.
RLS after withdrawal returns to what it was before the patient started Ropinirole.
Most people will therefore need treatment. Either iron infusions or pregabalin or low dose opioids.
I do know at least 3 people who have augmented on Ropinirole or Pramipexole, been through withdrawal, had iron infusions and are now med free.
If most of us had been treated with iron initially, instead of Ropinirole/Pramipexole, we would probably have been RLS free.
Also, if someone is destined to get an infusion, this article might be worth reading. relacshealth.com/blog/which...
This is the most recent infusion study I could find. At baseline (called T-0) the average IRLS score was at the highest end of severe at 29.7. At six weeks follow-up (called T1) the score dropped to 19.5 which is essentially the highest end of moderate. At 24 weeks (T2) the scores were inching back up to 21.3 which is severe. Yet the researcher indicates there was significant improvement?
pubmed.ncbi.nlm.nih.gov/372...
Veronal is one of those who had excellent results from iron infusion. The other is kakally, but I remembered she does take a very small dose of Pramipexole.The other lady is someone I met through RLSUK and through emails. She was on Pramipexole, then Targinact but her RLS was still very severe. She stopped Targinact, had an infusion and says her symptoms have reduced by around 90%.
DearJoolsg,
I have just had an appointment with my GP and I could not take on board (you I suspect can) what he said to me when I very "gently" introduced the topic that ropinirole and pramipexole should not be prescribed for RLS. I was not antagonistic but said I had researched it and did he still prescribe these drugs in this way. I should add that he was not the GP to blame for my augmentation on rotigotine.
He quite categorically said that he follows the NICE guidelines and these were updated in 2022 by the top medical practitioners in UK and Europe (I resisted telling him that perhaps there aren't any?) and therefore he uses several DAs to treat RLS as a first line treatment.
I told him that I was trying to escape augmentation by gradually reducing the oxycodone/naloxone-pregabalin medication in the hope that my dopamine receptors would recover and I would then be able to restart a RLS treatment regime with iron and Buprenorphine He agrees this strategy. He also agreed to increase my ferrous sulphate dose to 400mg and then 600 mg per day but would not agree to use ferrous biglycinate or an iron infusion. My ferritin is currently 42 but gave me a convoluted answer when I asked about serum iron as apposed to ferritin . The trouble was he clearly was on the defensive despite my repeated apologies for appearing to know too much!
My current medication regime is 20mg/day oxycodone/naloxone (5x 5mg extended release tablets) and 150mg pregabalin in one dose at bedtime. I am having problems sleeping not so much from RLS but basic insomnia. i have several of the known pregabalin/oxy side effects such as eye pain, urinary incontinence, impairment of gross motor function and balance problems
i would appreciate your comments please as to whether i am heading in the right direction?
Best regards
Davchar
NICE guidance, not guidelines, were updated in 2022, but NOT by the top experts! And they actually put pregabalin on an equal par with Dopamine Agonists. As we all know, NICE guidance is outdated and takes no account of the Mayo Clinic Algorithm.RLS UK is trying to change that.
Augmentation only happensnon Dopamine agonists and tramadol. It is drug induced worsening.
Oxycontin and pregabalin do not cause augmentation. But they don't work well for everyone.
Like you, I was on 25mg Oxycontin and 150mg pregabalin. They didn't cover my RLS so I had severe RLS every night from 8 pm until 10pm and was woken several times a night with RLS.
If your issue is insomnia, normally pregabalin counters the opioid insomnia caused by Oxycontin.
Buprenorphine may also cause insomnia for you.
You don't need your GP agreement to take ferrous bisglycinate. You can buy it from Holland and Barrett or online at Amazon.
If your GP won't agree to an iron infusion, you can go privately via the Iron infusion Clinic in Harley Street, but bear in mind not everyone responds to iron infusions.
Well done for trying to educate your GP on the scale of augmentation in the UK.
Thanks for your as usual encouraging reply.
You mention that 25mg oxy and 150 pregabalin didn't work so did you come off them and where did you go next..too ferrous biglycinate? over what period of time?
I will keep trying to educate him as he is quite young and should really beprepared to listen.
Davchar
Iron infusions and ferrous bisglycinate did nothing for my severe RLS. I am clearly in the 20%!I asked Prof Chaudhuri for help, as my RLS was 38/40 on the International severity scale. He said there was nothing more he could do.
I emailed Dr. Buchfuhrer in the USA and he was shocked. He said 97% of RLS patients can be RLS free and sleep 7/8 hours a night with the right treatment ( and the right doctor).
Then Shumbah posted on here about Buprenorphine. Like me, pregabalin and Oxycontin had not helped her.
She flew from Australia to New York to see Dr Glen Brooks who prescribed Buprenorphine. Her RLS disappeared!
I then asked Prof. Chaudhuri for Buprenorphine and he was quite dismissive and annoyed. I persisted, changing the 'tone' of my request.
He replied that he would have 'no objections, if my GP agreed to prescribe'.
Luckily, my new GP, being young, female and willing to learn, agreed to a trial.
I had reduced pregabalin by this time over 6-8 months very, very slowly as it wasn't doing anything.
I made a straight swap from 25mg Oxycontin to 0.4 mg Buprenorphine overnight.
Zero RLS day or night immediately. It was miraculous. I did have severe nausea & vomiting for the first 10 days, but I then remembered medical cannabis stops chemo nausea. I used my cannabis for a week, then stopped and all the nausea had gone.
Around 4 to 5 weeks later, I developed opioid panic attacks, but I had been expecting them as I had them with Oxycontin and kratom. I started a small dose of pregabalin again, as Dr Buchfuhrer had recommended it for panic attacks previously.
25mg at night of pregabalin stops all panic/anxiety.
I have been on 0.4mg Buprenorphine and 25mg pregabalin since June 2021 and have not had any RLS since. I sleep 7 or 8 hour's every night.
Dr Buchfuhrer was right. If only we could clone him.
Dear Joolsg,
Yes i remember your earlier message about your less than satisfactory experience with Prof Chaudhuri.
i am afraid the exchange of posts with your self and our American friends lost me but could you please; comment on:_
1) What is an opioid panic attack? Fortunately I don't think i have had one and need to know what to look out for?
2) My GP is prepared to prescribe Buprenorphine which he says are patches but only after reducing the oxycodone and pregabalin significantly. He said that to suddenly change would be too "tough" for me.
3) My cardiologist (I have CHD) has agreed to stop atorvastatin for a month as a trail to see if it affects my RLS he also agreed to reduce amolipidine (a CCB?) from 10mg to 5mg/day.
4) Iron- the debate has again "lost me" (ie on D1s and D2s etc) but i think I will purchase some bisglycinate and try instead of the ferrous sulphate prescribed by my GP?
Thanks and keep up the good work
Davchar
Hi Davchar,1. An opioid panic attack for me was a feeling of overwhelming anxiety, feeling 'wound up' and having to get outside, as though I were trapped in a small hole. I'd never experienced anything like that before, but my husband recognised what was happening.
2. I certainly reduced pregabalin slowly over several months before starting Buprenorphine, but I didn't reduce Oxycontin. Reducing an opioid causes opioid withdrawals- panic, sweating, nausea and increased RLS. That's why I made a straight swap to Buprenorphine. So do clarify with your doctor and explain you do not want to go through oxycodone withdrawals unnecessarily. The patch is available here, but as Buprenorphine has a long half life of 24-25 hours, pills are usually more effective. But in the USA, the smallest dose is 2mg. Here in the UK, the smallest dose is 0.2mg. Patches come in lower doses, which is possibly why your doctor suggested them. Some do well on the patches, others find pills or buccal film,which can be cut, better.
3. Statins and Calcium channel blockers are listed as RLS triggers, but clearly, your doctors need to be on board to monitor your heart condition. Some people find they worsen their RLS.
4. Iron seems to help the majority of those with RLS and should be first line treatment as per the Mayo algorithm. Some people find taking ferrous bisglycinate last thing at night helps their RLS. Taking ferrous bisglycinate did nothing for my RLS. Iron infusions did nothing. The experts say that around 60% of people will see a dramatic improvement after an iron infusion, 20% moderate improvement and 20% no improvement.
I follow the Mayo Clinic Algorithm and the top doctors in the USA like Dr Buchfuhrer and Dr Berkowski.
There is a difference of opinion amongst the experts on the use and effectiveness of iron.
At the UK AGM, Professor Walker expressed the view that iron supplements should be taken first thing in the morning, because that when hepcidin levels are lowest. That differs from the views of other experts.
I know and have met 3 people who have had iron infusions and their RLS has resolved. One still takes a small dose of medication, the other two are med free.
Ferrous bisglycinate is more easily absorbed and doesn't cause the same gut problems as ferrous sulphate. By all means try it. It may help.
I don't intend to get into the debate on up regulating /down regulating dopamine receptors.
All I know is that, like many others on here, having experienced withdrawal from Ropinirole, I will never touch another DA.
Dear Joolsg,
Thanks your detailed reply and all points noted.
I will concentrate on pregabalin reduction rather than oxycodone reduction
I agree totally about never touching another DA. I am not sure how far down the line (ie 3 months) I am on escaping from augmentation but still struggling to have even a half decent night's sleep or ability to watch a hours TV seated . Therefore I no way will I put on another rotigotine patch.
Best regards
Davchar
It does sound like the short half life oxycodone is not helping at all. I found the same. I think that it lasts around 4 to 5 hour's maximum and so produces mini opioid withdrawals. One of the main symptoms is RLS.As it has been 3 months since you stopped the DA, raising serum ferritin and brain iron should be the priority and then switching to a long half life opioid.
I hope things start to improve.
Joolsg,
Thanks for your comment and I think you are right but I thought that Targinact were supposed to last 12 hours slow release. If only 4 hours I would need 30mg/day. I suppose a better plan for me is to go back to 25mg/day (ie one 5mg tablet every 5hours approx) and concentrate on slowly reducing the pregabalin?
i assume by long half life opioid you mean Buprenorphine?
I appreciate your patient replies and hope to eventually get it right
Best regards
Davchar
Targinact is indeed supposed to last 12 hours, but the Sackler/OXY scandal made clear that Oxycontin does NOT last 12 hours. There are quite a few people on here who do well on 20mg Oxycontin taken 2 or 3 times a day, but there are also many of us who had mini withdrawals. It may indeed be better to go back to 5 x 5mg and monitor.Buprenorphine has a 24/25 hour half life which is why it works well for RLS.
Dear Joolsg,
Further to your help earlier this week I am sorry to come back to you but I am struggling with severe RLS today and i don't know why.
For last two days I have been taking 25mg/day oxycodone/naloxone (5x5mg with 1 tablet every 4/5hours) and the only change i have made is to reduce my pregabalin from 200 to 150mg (1 dose before bed).
For some reason my RLS have started early evening making the evening extremely uncomfortable and sleep difficult. I cannot understand why unless it is the reduction in one step of the pregabalin ie from 200mg/day (100mg in morning and same before bed)?
I am still planning to reduce the Pregabalin to at most 100mg/day before switching from Targinact to Buprenorphine.
I have purchased some 28mg tablets of iron bisglycinate and am taking two before bed on an empty stomach instead of ferrous sulphate.
I have stopped my Atorvastatin at the start of a month trial as agreed with my cardiologist.
As i said previously it is now over 3 months since my last DA use (2mg patch rotigotine)
My sleep regime has been a bit variable but not impossible once the first one or two hours of RLS is overcome but i cannot understand the deterioration of RLS yesterday and today?
I would appreciate your comments
Davchar
Are you taking the Amlodipine in the morning? It might be best to take in morning with doctor’s permission. It sounds like you’re doing quite well for someone who recently stopped a DA. Would your doctor allow you to take 10mg of the Oxy at night and drop one 5mg tablet from during the day?
DesertOasis,
Thanks your reply. I have been taking Amolipidine last thing at night but I am sure doctor would not object to morning but why?
On Oxycodone again no problem but i have been following Joolsg advice to take the 5mg slow release tablets every 4/5hours (ie 25mg/day) due to 3-4 hours half life. Yesterday for instance i took 5mg at 5am, 10am, 2pm, 7pm and 11pm.
I am encouraged that you think that even 3+months after last DA patch and in augmentation that you say "i am doing quite well?" How long would you think on average does it take to get back to something near baseline DA receptors?
What i cannot understand is why when I seemed to be on right path to escape augmentation a small change in pregabalin (200 to 150mg /day) seems to have really knocked me back.
What are your thought on this please?
Davchar
It may well be the reduction in pregabalin. You started on 150mg pregabalin, so must have increased to 200mg.RLS is different for every one of us. The same applies to the drugs we take.
Also, as DesertOasis says, it is only 3 months since you came off dopamine agonists.
If you recall, it took me 5 years to find Buprenorphine.
Oxycontin and pregabalin did not help my RLS much. The same for Shumbah.
It would appear that Oxycontin and pregabalin aren't helping you much either.
Presumably you are reducing pregabalin purely to allow you to start Buprenorphine?
If that is the case, you can switch to Buprenorphine while still on a low dose of pregabalin. I take 25mg pregabalin still.
Most RLS patients take around 6 months after withdrawal from dopamine agonists to find the right combination of meds.
It is still very early for you.
You managed to stop the RLS with 5 x 5mg Oxycontin and 150mg pregabalin. Then you changed to taking the Oxycontin twice a day. That's why I suggested you go back to 5x5mg a day.
You were having insomnia from Oxycontin. Pregabalin will counteract opioid 'alerting' and insomnia, so please bear that in mind if you continue to reduce pregabalin.
I am wary to advise you to switch to Buprenorphine simply because Oxycontin and pregabalin did start to work for you.
So, you have two possibilities.
Stay on 150-200mg pregabalin and 25mg Oxycontin for a month to see if your RLS and opioid insomnia settle, OR discuss a switch to Buprenorphine NOW.
As opioids clearly caused insomnia for you, it may be best to stay on the lowest dose of pregabalin that stops the insomnia.
You probably find you get good sleep between 5/6 am and midday. For now, sleep whenever you can until you find the right meds/dose/timing for you.
Dear Joolsg,
Yes i am trying to reduce Pregabalin so i can at say 100mg/day chnge to Buprenorphine but at 150mg pregabalin and 25mg /day Oxycodone (5 x 5mg) I am unable to get to sleep until 2 or 3 am because of RSL (not so much insomnia). Once to sleep at say 3am i then get a few hours sleep.
Could you please explain to me what you mean by statement
" you were having insomnia from Oxycodone. Pregabalin will counteract opioid "alerting" and insomnia. I assume you mean that oxycodone causes insomnia and I probably at my "stage" of augmentation "escape" need say 150/200mg pregabalin to get to sleep initially?
i think you are right in that i should stay on 150-200mg pregabalin and 25 mg oxy for another 3/4 weeks to if i can go forward on that.
Thank you for your support
Davchar
4 days ago you said that you were having problems sleeping NOT with RLS, but insomnia.That is what I was referring to. Insomnia is a common side effect of opioids. That's why Pregabalin is added to Oxycontin, often to counteract opioid side effects of insomnia, alerting, anxiety and panic attacks.
I was simply confirming what you had said.
Text
Dear Joolsg,
Sorry for confusion but I am a bit confused as whilst I cannot sleep because of RLS symptoms there are nights when I simply have no symptoms and just cannot sleep . On the majority of nights I go to bed at about 11-30pm and eventually get to sleep (after several "walks") about 3am and then sleep through until about 8 or 9am .
I apologise for giving you the unclear facts but thanks your as usual helpful reply
Davchar
No problem. I recall that during the first year after getting off Ropinirole, I would often wake and have the compulsion to get up and walk around. Strangely, I didn't have the horrible leg sensations, but I just had to move.So, you can get RLS urge to move, without the horrible creepy, crawly sensations.
It usually means the RLS is not treated sufficiently.
In your case, I would wait one month to see if 150mg pregabalin and 5 x 5mg Oxycontin start to work.
If they don't, then you can ask to switch to Buprenorphine, starting at 0.2 or 0.4mg in pill form.
Dear Joolsg,
I know it is only a couple of weeks since your helpful comments but I have an appointment with my * beginning to learn" GP later this week and I was wondering whether I should push now for a change to Buprenorphine.
I have continued with 150mg pregabalin and 25mg (5x 5mg spread over 24hours) of oxycodone/naloxone and whilst there are signs of a lessening of augmentation (perhaps simply with time?) I still have to get up a couple of times before I eventually get to sleep at about 1-30-2am. The symptoms are numbness of feet and calves with a need to move. I also have RLS symptoms in the evening watching TV.
My question is really as follows:-
I understand that buprenorphine blocks oxy but does this mean i need to reduce the oxy before i can go onto the 02-04 mg pills of the former? I must admit that isn't going to be easy although i think I could get down to 20mg without too much "pain"!
I suppose the GP might say increase the pregabalin to block stop the oxy causing the RLS/insomnia problems but I am reluctant to do this on account of the balance issues pregabalin causes for me
Kind regards
Davchar
You could certainly explain that you are still experiencing RLS severely. If you're getting RLS every night and being woken 2 or 3 times, that's classed as severe.You can ask for a one month trial of Buprenorphine. You make a straight swap from Oxycontin to Buprenorphine.
So if GP agrees, ask for 0.4mg Buprenorphine pills. Take at night around 2 hour's before normal sleep time. Continue the pregabalin, as it will help with any anxiety/panic caused by Buprenorphine.
Common side effects are nausea and anxiety and wakefulness. For the nausea, medical cannabis with THC really helps- chemo patients use it for nausea. Alternatively, kwells sea sick pills and raw ginger tea will help. It passes after about a week.
In many areas, Buprenorphine is 'red listed' and GPs cannot prescribe it.
Dear Joolsg
As usual thanks for your prompt help.
The neurologist I saw had suggested Buprenorphine and the G|P noted that last time we discussed it so I am hopeful he will prescribe it.
With a direct swop will I suffer oxy withdrawal symptoms?
Kind regards
Davchar
Dear Joolsg
I have had my scheduled GP appointment today and i am beginning to think that the doctor is prepared to learn more about RLS.
He agreed the following;-
1) A lot of my recent "balance issues" could well be because of the use of oxycodone and pregabalin together as this gives problems with the body's gross motor function
2) That I can replace oxycodone directly with buprenorphine as a RLS blocker
3) That Lanzoprazole is a RLS trigger and he is happy for me having stopped taking it.
4) Pregabalin alone could be the cause of my coordination issues and i should try to come off it or at least reduce it somewhat.
5) use of iron bisglycinate instead of ferrous sulphate
As a result he has prescribed as follows;-
a) Buprenorphine- a month's trial of 10mg patches (apparently tablets are not readily available). The patches are supposed to each last a week but if after 3days i find not enough for my RLS control then I could add another patch or cut one in half and add.
Is in your opinion a 10mg patch equivalent to 0.4 mg tablet/s?
I would appreciate your experienced comments
Best regards
Davchar
The 10mcg patch releases 10mcg each hour.24 x 10mcg = 240mcg a day which equates to 0.24mg a day. That's half the dose I take.
That is the lowest dose in pill form.
I'm glad he's listening to you, that is half the battle. And he realises the patch does NOT last a week, which is confirmed by most people on here.
0.24mg may not cover your symptoms, so you could see how it works for a week and if it's ineffective, ask to switch to 0.4mg pills.
I haven't heard any reports that pills are in short supply. Here in S. London, there are 13 different brands available.
Pills tend to work better for RLS, patches for 24/7 pain symptoms.
Pregabalin definitely causes coordination issues, but a low dose can counter Buprenorphine anxiety/ wakefulness. So reduce slowly from your current 150mg by 25mg every 4 or 5 days to 50mg. Stay on 50mg for a while to see what symptoms you have. If you still have coordination issues, reduce completely and you can assess whether Buprenorphine causes anxiety or wakefulness.
Dear Joolsg,
i now have the 10mg Buprenorphine patches but before i apply first one i wanted to ask you whether or not you overlapped the oxy and buprenorphine at all (ie one or two nights) before stopping the former?
As you can see from the timing of my post i am having a particularly bad night (it is 4-30am) and i don't know why? I am still taking oxy (20mg per day) Did you have such a problem in escaping augmentation? I know i am only 3/4 months from my last DA patch but should i still be having nights when the RLS affects my arms as well as feet?
i have stopped statins and Lansoprazole so I am at a loss to know what else is triggering such a bad night. Could it be beta blocker bisoprodol ( I only take 1.25mg tablet once a day)
Kind regards
Davchar
No I didn't overlap Oxycontin and Buprenorphine. I stopped the last Oxycontin pill at midnight on a Monday, and took the first Buprenorphine pill on Tuesday night. Buprenorphine pushes Oxycontin off the opioid receptors, so shouldn't be taken alongside Buprenorphine.The main issue is probably Oxycontin. It doesn't last 12 hours for the vast majority. It only lasts 4 or 5 hours and so casuses mini opioid withdrawals. The main symptom of opioid withdrawals is RLS.
I wasted 5 years on Oxycontin and believed Professor Chaudhuri when he said there was nothing else and I had to accept 4 hour's broken sleep.
He was totally wrong.
Beta blockers can sometimes trigger RLS, but there are reports that propranolol is a safer option.
Dear Joolsg,
I have just had the most frightening night of my RLS "journey". I stopped taking oxycodone at noon yesterday and at midnight last night I put on the first Buprenorphine 10mg patch. By 1am I had RLS symptoms all through my body and my body was literally "creeping" despite repeated "walks" and stretches etc. my arms were affected more tha at the height of augmentation
By 4am and no sleep i decided there was something not right and removed the patch. Within a few minutes the almost violent shaking had gone and gradually I got a couple of hours sleep. Today I feel totally drained and confused.
Do you think this means I cannot tolerate Buprenorphine? If so i am really down because i cannot see a way forward.
Davchar
I have never heard of that reaction.10mcg patch releases 10mcg an hour. Over 24 hours, that is 0.24mg.
I switched from 25mg Oxycontin to 0.4mg of Buprenorphine.
It could be that you experienced opioid withdrawals because the dose of the patch was too low. The main symptom of opioid withdrawals is severe RLS.
But if that was the case, you should still be experiencing those symptoms now, while not taking anything.
I suggest you ask your GP for an equivalent dose of Buprenorphine, which is 0.4mg, and ask for pills rather than patches.
Patches are more suitable for continuous pain.
Thanks for your replied. I rightly or wrongly took a 5mg Targinact Oxy tablet shortly after removing the patch (about 4am) and whilst naturally feeling very tired and weak I have had no RLS since I got up at 9am.
My next appointment with GP is not until 29th so I thought i might stick with 20mg of oxy until then. You of course be right, on the opioid withdrawal, as it was not the normal (for me) RLS ache in feet and calves but a more "creepy" sensation which became more and more unbearable to the point where i was throwing my arms around.
Did I allow enough time between last oxy 5mg and first patch ie 10-12 hours? That shouldn't matter though if Bupre pushes oxy off the receptors and the patch gives instantaneous effect?
The GP did say I could add a second patch after 3 days if first one not effective but i am nervous to do that -equivalent to 0.48mg per 24 hours
Do you think there is any problem to go back to oxy after a longer period (say a week or two) on Buprnorphine?
I am going through a difficult time with the medications at the moment and am very grateful for your comments and support
Davchar
Until you see your GP again, I would stick to Oxycontin.Explain what happened.
The patch only gives a very tiny dose of Buprenorphine over an hour.
For RLS, symptoms are worse between 10pm and 6 am so ideally, we need the biggest 'hit' of Buprenorphine around 9pm. Taking a 0.4mg pill at that time gives out most of the dose over the first 12 hours when we need it most, but still keeps delivering some dose over the next 12 hours and thus prevents mini opioid withdrawals.
I suggest you ask your GP for the pill version.
In the UK, my pharmacy can source 13 different brands of Buprenorphine. They start at 0.2mg and go up to 8mg.
You should ask for 0.4mg pills as that is the nearest dose equivalent to 20mg Oxycontin.
If your GP refuses pills ( no idea why he would do so) then you could ask for the 20mcg patch and start it in the morning.
Dear Joolsg,
Thank you so much for you support
Davchar
Dear Joolsg,
You wont believe this but all my local pharmacies or their suppliers have any stock of Targinact. i have asked my surgery to prescribe an alternative as i run out tomorrow! The thought frightens me! Is it a solution to put use 2x10mg Buprenorphinr patches or 1 and a half?
The surgey have promised to comer back to me
Do you know an alternative to Targinact please?
If all else fails over the weekend is something like oramorph a solution temporarily ?
Davchar
Good morning Joolsg,
I have continued to use a10mg Bupre patch but also took at 10pm my penultimate Targinact 5mg tablet. had a reasonable night so perhaps Lotte eas right that patches do not "kick in" for 24hours or more. This is also supported by the fact that even now (ie 9am) I am beginning to get some mils RLS symptoms This is new to me and surely must confirm that the patch is either not yet providing sufficient absorption or I need a bigger patch? I am still waiting for my GP to comeback to me on my next move as no Targinact available
If the weekly patch does not provide a barrier to RLS for say24 hours then does one overlap at say 5 or 6 days on?
Davchar
Dear Joolsg,
I am sorry I haven't come back to you earlier but the following has happened in the last 2 days.
I am now of the opinion that the awful night I had when i thought I had reacted badly to my first buprenorphine, was caused by the patch firstly not "starting up" for 24hours and even then not enough opioid provided. Hence a mini withdrawal caused the bad place!
I managed to get some Shortec 5mg oxycodone tablets (ie no naloxone) and have used those tablets to act as a barrier until the Bupre patch has started to act and last night with one 5mg Shortec tablet and the 10mg bupre patch I had a really good night's sleep. The 2nd patch (I removed first one when i thought it was upsetting me) has now been in place for nearly 3days and so tonight i think I might take a chance and drop the 5mg oxy tablet? At least this will test whether the 10mg patch is sufficient for me
i have kept my pregabalin at 150mg per day in one dose in the evening.
Do you think i am on a path which will lead to my "escape from augmentation"?
Kind regards
Davchar
I am not Jools, but yes Davchar, I think you should not take any more oxy as of tonight. Otherwise you won't know whether your current patch is sufficient. If you still get 'some' symptoms, you may be able to walk them off fairly easily and/or you know that you current dose is insufficient. Although you should try a few more nights without the oxy. To be sure.
Dear Lotte,
Of course I know you are not Joolsg so sorry but it must be the elation of a good night's sleep. just think how bad i might be without it! Thanks again for your support and i will keep you posted. I hope you got my post of this morning?
Davchar
I did!
Good morning Lotte,
I did as you suggested and did not take any oxy last night. I did have a few milder RLS incidents but as you thought i was able to walk them off quite quickly. i will repeat again today & tonight to see if the 10mg patch is providing enough Bupre to work for me. I have continued with 150mg per day of pregabalin but hope to reduce that in the near future.
Kind regards and thanks
Davchar
Good news so far! I hope tonight and the next nights will be even better (without any rls-twinges..).
Lotte,
Tks your support...appreciated. i haven't taken any further oxy so let's see how it goes tonight
Kind regards
davchar
Good morning Lotte,
I am well into my second week on 10mg Bupre patches and so far so good. I seem to have managed a satisfactory changeover of patches by using the single day overlap you suggested.
I have this morning read some slightly concerning posts about the "notorious" (Joolsg words) short lived patches ie running out after 3/4 days, change of brand( I use Bulou), and the use of sublingual tablets (your post I think). Naturally when I seem to be heading in the right direction I don't want to confuse the issue but should I be concerned and what is the best strategy on these issues
Kind regards
Davchar
Good morning Lotte and i hope you had a nice Christmas?
I am please to say patches seem to be helping a lot and the only problem i have is that they seem to be affected after I take a warm shower. Did you have this problem?
I am currently overlapping two patches such that at any one time I have 2x 10mg patches on. I still get RLS breaking through shortly after getting into bed but am able to walk it off quite quickly and sleep regime is comparatively much improved. i have slightly reduced my pregabalin intake to 125mg per day
Regards Davchar
Good news Davchar. It is up to you how you want to deal with the minor breakthrough rls just after bedtime. I can relate to it being annoying, but I am personally also of the opinion to keep medicines at the lowest effective dose. Do discuss with you doctor to decide what will work best for you.
I have been stable on the patches for well over two years and counting. I hope the same will apply to you. Meanwhile don't worry about things that 'may' happen, as it may not happen to you.
Dear Lotte,
Thanks and i know what you are saying. Do you find the the patches are affected by warm shower. I find that patches only last about 4/5 days.
Davchar
For me that depended on the brand. I have had Teva brand from the beginning that worked well for (almost) 7 days. But in the beginning of this year I received Solgar brand and indeed that one lasted only 4-5 days. Currently I find that putting the patch on the back of my shoulder gives the best results. Last week and this week I put it on the top of my arm and the patch seems to release a lower amount of buprenorphine. I am currently standing and stretching to allow going to bed in a few minutes. But maybe for you that location (top of arm) will give better results? Worth a try?
For me, a shower doesn't make a difference, but I don't shower long and not every day. (I do wash myself daily though 😉).
Dear Joolsg,
I am sorry I haven't come back to you earlier but the following has happened in the last 2 days.
I am now of the opinion that the awful night I had when i thought I had reacted badly to my first buprenorphine, was caused by the patch firstly not "starting up" for 24hours and even then not enough opioid provided. Hence a mini withdrawal caused the bad place!
I managed to get some Shortec 5mg oxycodone tablets (ie no naloxone) and have used those tablets to act as a barrier until the Bupre patch has started to act and last night with one 5mg Shortec tablet and the 10mg bupre patch I had a really good night's sleep. The 2nd patch (I removed first one when i thought it was upsetting me) has now been in place for nearly 3days and so tonight i think I might take a chance and drop the 5mg oxy tablet? At least this will test whether the 10mg patch is sufficient for me
i have kept my pregabalin at 150mg per day in one dose in the evening.
Do you think i am on a path which will lead to my "escape from augmentation"?
Kind regards
Davchar
Davchar, I am also on buprenorfine patches. Sorry I didn't see this thread and your questions earlier.
1. The patch takes a day (or sometimes even a bit longer) to start working. So you were experiencing uncontrolled RLS possibly coupled with some withdrawal from the oxycontin.
2. The amounts in the patch cannot be compared directly to the amounts in the pills as the absorption rates differ. Absorption from the patch is higher than from the pills. I do well on a 5 mcg/h (7d) patch, but I usually do not require high doses for effectiveness.
3. So what caused the awful feeling that got better when you removed the patch? It could be a reaction to the buprenorphine, but it only starts to work after some 8-12h, so the amount that got into your body was still low. AND, upon removal of the patch , the buprenorphine that had entered your body is still there. So most likely it was withdrawal coupled with maybe some anxiety over it?
4. If I were you I would put the patch back on. And maybe even start with half a patch. If it isn't enough, but works, it will still reduce the symptoms markedly. You may still be up with bad symptoms, but the buprenorpbine should start to work in 8-12h. By tomorrow evening/night you should be able to gauge its effectiveness. I advise against increasing the dose of the patch, as some people get initial strong side effects. Better start low and increase if needed, but not too quickly.
Finally, I really hope the patch works as well for you as it does for me.
PS. If the patch doesn't last the 7 days, ask for a different brand. I do well on the Teva brand, but the Sandoz brand made me feel dizzy for 3-4 days and the last 2 days it didn't work any more.
Dear Lotte,
Thank you for your helpful reply which i found very informative especially the facts about the starting point of "bupre" patches.
However i am a bit confuse as in point 1 you talk about 1 day to start and in points 3 &4 you quote 8-12 hours. If they only start to work after 1 day then yes I must have had very severe RLS as I had no "barrier" for probably about 6-8 hours
Joolsg explained that the bupre "displaces" oxy so one should not overlap the two. However if the patch takes say 12 hours to start then I had better take one again tonight as the oxy (5mg) I have just taken will not be displaced?
It was also interesting to note that you cannot directly compare the absorption from a patch to a bupre pill.
I will let you know tomorrow how it goes but admit to being very nervous about going to bed!
Thank you for you support
Davchar
Good morning Lotte,
I am pleased to say I believe you were right. Last night about midnight having taken a 5mg tablet of Targinact(oxy) at 10pm I put on a 10mg patch and have not had the very bad RLS symptoms as on the previous night. As I now only have one 5mg tablet of oxy left (and none available locally) I am hopeful that the bupre patch will at least keep my RLS at a reduced level later today and tonight.
Without your post I would have been chasing around the county today to try find some targinact! So thank you sincerely and keep posting.
Davchar
Lotte,
Does the fact that the patch doesn't start to work mean that say after 6days you need to add a second patch ?
Kind regards
Davchar
Dear Davchar, if the patch works for the full 7d, like mine does for me,, you should put a new patch on on the same day of the week you put on your current patch. I started on a Saturday morning, and put a new patch on each Saturday morning. I keep the 'old' patch on for another day, thus do not remove it until Sunday. Just in case there is some buprenorfine left in the old patch and in case the rising amount of the new patch isn't enough yet.
Sorry I didn't reply earlier, I eas occupied all day.
Davchar, I did some very quick reading through the (Dutch) information about buprenorfine patches from the Dutch institutes that is very loosely comparable to the NHS. It says that the first 12 h after applying the patch other (painkilling) medicines should be taken if coverage of (pain, in out case RLS) symptoms is needed. Hence what stuck in my mind is the time it takes for the patch to start working. That, coupled with my own experience as I once forgot to put on a new patch on a Saturday, its 'due date'.
That text also says that whether the patch is effective van only be evaluated after 24h. Also that the max effect is reached after three days, and that potential increases in dose should not be done within these first three days.
I hope this selection of information suffices for now. Don't hesitate to ask more questions about my experience with the patch, if any remain. I hope the patch starts working tonight! If not, consider potentiating with a paracetamol (1x 500mg).
Dear lotte,
Thank you for the useful informative. Today i have found some oxycodone tablets and have taken another this afternoon. Depending on my symptoms later this evening (RLS usually bothers me late evening whilst watching TV) i will decide whether to take another 5mg oxy or just depend on last night's patch (plus perhaps paracetamol as you suggest).
Do you take any other RLS drug such as pregabalin and have you been through augmentation?
Kind regards
Davchar
Hi Davchar, just about to go to bed...
Yes, I have been through (early) augmentation (with ropinerole), tried tramadol, gabapentin, pregabalin but couldn't reach effective doses because of unbearable side effects. Oxycontin gave me mini withdrawals and made me feel 'not me'. Then landed on buprenorphine after a post from Shumbah. Took the sublingual pills for quite a while, but switched to t he patch to avoid mini withdrawals during the day. Since buprenorphine, my RLS symptoms are few and far between. I hope yours will be like that soon too! Sleep well 😴
Lotte,
Good morning and thanks for your answers which I found matched my experience in many ways mainly the side effects from pregabalin and oxycodone.
Last night at about 10pm I took a 5mg tablet of oxy to back up the patch simply because RLS started as I was watching TV. The result after a limited period of walking and stretching was a good RLS free night after about 1am. This morning I feel a lot better in myself, except for a headache, and have not taken any more oxycodone so far hoping that the patch will now suffice. Fingers and toes crossed
I am encouraged to know from your experience that Buprenorphine has significantly reduced your RLS. My augmentation was caused mainly by rotigotine patches but before that i had also been prescribed ropinerole and other DAs.
How long did it take to overcome your augmentation. It is now about 3 to 4 months since my last DA patch but my RLS is, at its daily peak (1am) , still severe.
Kind regards
Davchar
Davchar, fingers crossed too that you can have a rls-free night tonight on the patch only.
The severity of one's rls is difficult to gauge unless one stops all meds for some period of time (weeks?). I found that when I still used oxycontin, I also got some (rebound? witjdrawal?) rls-like symptoms after the effect of the last oxy pill wore off. You may experience that too. Maybe better focus on how the 10mcg/h bup patch covers your symptoms. That should become clear over the next few days. If symptoms remain that interfere with good sleep, you should discuss with your doctor an increase in patch dose. There are also 15 (and 20) mcg/h patches. But I hope you won't need these. Will you let me k ow in the next few days? Just being curious. Meanwhile: well done so far.
Lotte,
Thanks your reply and your experience. i find that every "scrap" of information is useful. i will of course let you know how my situation develops ...or otherwise!
Kind regards
Davchar
Good morning Lotte,
....and it is a good morning as I had the best sleep for "years"! It is early days yet and I have to admit I took a 5mg oxycodone at 11pm last night to supplement the patch. i did have some symptoms but after one early "walkabout" (approx 12-30am) I slept very well. The symptoms I had in my feet were ones which I didn't associate with my usual RLS aches etc.
This morning (9am) I am getting some unusual tingling sensations in my feet as I suspect the 5mg oxy has "run out" and the patch alone not putting out enough strength to block what I think you are calling "rebound withdrawal"? I will attempt today & tonight to stop the oxy completely and see what happens.
Thank you for your continues interest & support
Davchar
Dear Joolsg,
Thank you for your prompt reply.
I think that my GP realises that I will need to add a second patch after 3 days and I must admit I am nervous about the direct switch from Oxycodone to Buprenorphine. What am I likely to experience in the ways of side effects in addition to anxiety and wakefulness? I will stick with 150mg of pregabalin during change over. You mentioned "panic " attacks in an earlier reply and I worry that the 10mcg patches is less than equivalent oxy I currently take ie 20mg/day? Would it be better to up the pregabalin a little to balance this?
I am not sure which is worse the daily "urge to move" RLS symptoms or the very bad balance/coordination problem caused over the years with pregabalin.
I am very appreciative of your support and will put out a summary post for a wider site viewing later.
Kind regards
Davchar
Dear Joolsg,
I forgot to add a comment from a consultant neurologist who i saw quite recently. I wondered if you my like to comment on following;-
"i suggest a rotational programme as follows:- The Dopamine agonist , clonazepam, and low potency analgesic is a very reasonable approach forthis difficult condition"
Davchar
My view is that this neurologist is completely and utterly WRONG.But I'm not surprised. Most UK neurologists have had zero training in RLS. They are used to prescribing very high doses of dopamine agonists to Parkinson's patients.
Dr Jose Thomas of Gwent Sleep Clinic says he spends most of his time undoing the damage caused by neurologists.
The UK is around a decade behind best practice. Most US experts will not prescribe dopamine agonists.
If you have experienced drug induced worsening of RLS caused by Ropinirole, Pramipexole or Rotigitone, your D1 receptors have been over stimulated and 'up regulated' and they scream out for their dopamine hit. This drives the worsening of the RLS.
Once this has happened, taking another dopamine agonist or going back to the same dopamine agonist will quickly cause augmentation again.
I don't know many people who would choose to go through the hell of withdrawal more than once.
I'm sure that if this neurologist watched a video of withdrawal or actually spoke to 3 or 4 people who have experienced augmentation and withdrawal, he would soon be persuaded that his views are outdated.
One day, these neurologists will be forced to admit they were totally wrong and that they contributed to the unnecessary suffering of thousands of RLS patients.
Rant over.
Hi, Joolsg. Are you saying that since I used an opioid to get off the DA's, and did not go drug free, that I can't tell what my baseline really is?
Also-I had an infusion but Dr. B said that if it isn't the right cocktail, it probably wouldn't be the one to count on. I also had the infusion while I was still taking ROP and PRAM, because I had to talk a local neurologist into it-crazily and typically, he knew nothing about it and was/is still using the DA's. But he did get me an infusion and short term methadone. I just wish it had been done AFTER I was off the DA's, and written up by Dr. B so it was the correct concoction for RLS.
Thanks!
No, I don't think that.
Dr Earley at Johns Hopkins is the man who proposes that theory. It's why he insists on a totally drug free withdrawal period of 14 days after stopping dopamine agonists.
He thinks you can only see the true base level of RLS by removing all medications that affect/interact with dopamine receptors.
Most other RLS experts in the USA believe it is far too difficult to withdraw from Dopamine agonists without the help of opioids and without starting a new medication, like pregabalin, a few weeks before the last dose of DA.
I know I could not have done it. It was bad enough for me and I used tramadol and kratom and cannabis.
Perhaps if you are in your 40's and otherwise fit and healthy, it might be bearable.
Cheers.Very helpful.
Hi DicCarlson,
I’m very keen to see the Prof Chris Earley talk you mention but I can’t seem to access it directly. I wonder if you are able to send me an actual link rather than finding it via the ? “more’ button etc. (I know it is my fault for being a computer illiterate.
Thanks
Kakally
Thanks for your post as video quite direct and in some ways frightening as seems to me to say if you want to be clear of RLS and drug free after augmentation from DAs then you have to go through the 12 day detox "hell"! Do you read it the same way?
Best regards
Davchar
If you are on DAs currently - you need to begin a VERY SLOW taper period. Look at some of Sue Johnson's protocols depending on what DA you are on. 12 days - WAY too soon to be off any DA! Watch on YouTube - click on "more" and use the transcript to go to the part you need to watch.
Yes, Davchar, I heard it the same way. Dr Earley says that if you use another medicine, especially an opioid, during the reduction and drug-free period to help with the withdrawal symptoms, you WILL NOT REVERT the augmentation. In the questions at the end, someone asked specifically on what experience and/or data this statement was based. Dr Earley then only gives the example of one woman, with whom he got in a legal procedure about the withdrawal after she stopped the methadone - that replaced her earlier dopamine agonist - after one month.
I can hardly believe this is the sole underpinning of his statement. Because if so, it is extremely weak. N=1, of course. But also we know from our collective experience that withdrawal symptoms can last much much longer than one month. It may be, that this person still was in withdrawal from the dopamine agonist. Amplified most likely by the methadone withdrawal symptoms, that can occur even when withdrawing from a low dose and after a short time. I experienced that myself.
As I find it difficult to believe that dr Earley bases his statement on only one patient experience, I hope he has far more to substantiate his claim. We can ask him, e.g. through Karla Dzienkowski of rls.org.
I really hope he has other patiënt experiences, especially from those having been on a low dose opioid for a long time after stopping their dopamine agonist. Because, if what he says is true, even this increasing group can return to likely a lower severity of their symptoms. If indeed one return to baseline after withdrawal from all RLS medicines, the symptoms might be more responsive to iron treatment, and the rate of 60% will indeed reached. Or, alternatively, more people would respond better to alpha-2-delta ligands / gabapentinoids.
I don't know. I wish. I would indeed opt for the withdrawal if I really knew things would be (far) better afterwards. Based on the information dr Earley has provided, I doubt it.
Veronal is one, the others have left the site. 60% show dramatic improvement after iron infusion, 20% moderate improvement and 20% do not respond at all.I suspect that those in the 60% do not come back to the site because their RLS is gone,or completely under control.
I keep meaning to keep a list of everyone on here who has had great results. Someone posted within the last 3 days about the success of their infusion. I'll find it.
You fail to realise that here in the UK, methadone and buprenorphine are NOT prescribed for RLS. Buprenorphine is red listed in MOST areas which means a GP is UNABLE to prescribe it. Only a neurologist or sleep specialist can prescribe. The current waiting list for neurologists is around 13-14 months as our NHS is falling apart. Paying £350 to see a neurologist privately often doesn't help because the local GP can refuse to fulfill the prescription.
Asking a UK GP for opioids to help with DA withdrawal is of course the obvious solution and I DO suggest it to everyone. BUT, very few UK doctors will agree. In 2016, my old GP laughed in my face when I begged for help getting off ropinirole. She refused opioids and told me to drink milk, for the calcium. Seriously!
Just read the desperate posts from many in the UK. No one is listening.
In an ideal world, where doctors have been taught everything about RLS, of course opioids would be prescribed and buprenorphine licensed for refractory RLS. We are NOT in an ideal world, so we have to play along with the existing system.
Buprenorphine is NOT licensed for RLS and the MHRA will not accept US evidence. That's why I am trying to find a team in the UK to carry out trials of buprenorphine so GPs can prescribe it. So there is little point me advising Boofoo to go straight on buprenorphine. It isn't even set out in the Mayo Algorithm- pregabalin is first line treatment and opioids are reserved for REFRACTORY RLS.
I wasn't even aware of buprenorphine for RLS until Shumbah posted about it.
Also, as I understand it, you have not ever been on a dopamine agonist. For those of us who have experienced augmentation, staying on DAs, or switching between them, is NOT an option. Severe augmentation nearly drove me to suicide. It was relentless, severe RLS in every part of my body. I couldn't sit still or rest. No way on earth could I have stayed on the poison. UK doctors would simply refuse to believe augmentation exists. As you know very well, the situation in the USA is very similar.
I'm not putting a dark cloud over every one who comes here, I'm telling them how to navigate the UK health care system to achieve the best result.
And I prefer to follow the top US experts and RLS.ORG. The patch is a long lasting DA and is harder to get off than the shorter acting versions.
So, yet again, we will have to agree to disagree.
Just to correct you- I did use ferrous bisglycinate every night while going through withdrawal from Ropinirole. I was also given tramadol by my MS neurologist. So iron and opioids while withdrawing did NOT make it easy.It made no difference to the hellish withdrawal.
For every person you produce that has had an easy withdrawal, I can produce someone who has gone through hell, even with ferrous bisglycinate and starting pregabalin/gabapentin.
As you should know from reading posts on here, we all respond differently.
Not everyone pops a ferrous bisglycinate before bed and miraculously has no RLS.
I'm glad I was warned by members on here that it would be hellish, otherwise I would have panicked completely and visited A&E.
I knew what to expect from Dr Earley's webcasts and Dr Buchfuhrer's emails. But I also knew that by the end of 2 weeks, the severity of withdrawal would be over.
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