I’ve read many posts here which has given me hope. IF YOU FOUND COMPLETE RELIEF from buprenorphine or any other drug, please write a short comment to give me some hope!
I was previously on pramipexole, pregabalin and rotigotine patches. Currently on gabapentin and medical cannabis. Sadly, while they do relief symtomps to a certain extent, I can still hardly get any sleep and it’s just becoming rather unmanageable. RLS is affecting each and every area of my life - constant exhaustion, RLS in arms, day time RLS every single day. Just trying to get through and “exhausted” is how I describe myself every single day for months if bot years now.
I’ve read about some of your great experiences with buprenorphine - is this the only option, or is there anything else to try? I believe the majority of you have had amazing results, and it’s just so refreshing to read! I’m slightly concerned about the long-term effects after rotigonine - magical drug to begin with, absolute hell at the end. Hope buprenorphine does not work in the same way.
Iron check underway - no referral for over 6 months (surprise surprise). Did get blood tests years ago, was fine, so assuming it’s not related to iron, but always good to check (I’m the third generation person with RLS, so I guess it’s genetic, started in childhood as well).
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I get COMPLETE relief from RLS with 0.4mg sublingual Buprenorphine.I NEVER get any RLS and sleep 8 hours every night.
It literally saved my life as I had logically reached the conclusion I wasn't prepared to carry on living with severe RLS on my previous meds ( 150mg pregabalin and 25mg Oxycontin).
I had an iron infusion and my serum ferritin raised to 805. Still no relief. I tried EVERY possible vitamin and mineral supplement, grounding sheets, restiffic leg straps etc.
Buprenorphine worked instantly the first night I took it. RLS score went from 38/40 to 0/40 overnight.
I did have to fight for it. There were several heated exchanges with Professor Ray Chaudhuri at Kings College. Eventually he sent an email to say he would have no objections if my GP agreed to prescribe.
Luckily I live in an area where Buprenorphine is not red listed. My young, female GP was happy to read any research I sent.
Side effects were severe at first. Extreme nausea for 7 to 10 days. However, I resolved it with medical cannabis taken for a week.
Then opioid panic attacks at week 4. But I had suffered with them on Oxycontin so was prepared. I had a stock of pregabalin and Dr Buchfuhrer had emailed me to say pregabalin would stop the panic attacks.
I took 50mg for around 4 weeks and slowly reduced down to 12.5mg. It stopped panic attacks and helps counter 'opioid wakefulness'.
I also get opioid sweats and I take half a cetirizine anti histamine. Pregabalin also helps sweats. But I'll take a few hot flushes and sweats over severe RLS any day.
Hello Joolsg, just read your post to Artificial with great interest. You say you take 0.4 subliminal Buprenorphine which completely removed RLS but it appears you suffered quite extreme side affects, is that normal, as you may remember I am using 10mg 7 day parches and so far I have not experienced any side effects. The only issue is that my body does not always absorb the medication and I have to dispose of that patch and use a new one. I’ve had to dispose of 4 patches in the past 3 months. I have reported this to my specialist Dr Christopher Murphy and he is aware of the issue and I’m waiting for a call from him. I’ve requested a change to tablets. Is a 0.4 mg Buprenorphine tablet equivalent to a daily absorption of 10 micro grams through the skin and do you think a higher dose patch could help. I like the convenience of the patch. As you are the fountainhead of knowledge RLS, I’m hoping to be armed before I speak to Doctor C Murphy
The above link shows comparative opioid doses. It’s a little complicated, but footnote 4 basically helps you convert patch dosage to sublinguals. The shortcut answer is to multiply your patch dosage (shown as mcg per hour) by 60 to derive sublingual dosage. So a 10mcg patch is equivalent to 600mcg (.6 mg) of sublingual. This isn’t necessarily exact for everyone, but I have found it to be fairly accurate. At least it’s a good starting point.
You are so lucky to not be experiencing any side effects!! While buprenorphine completely handles my RLS, I have been struggling to find alternatives and/or the lowest dose possible because of side effects (constipation and fatigue for me).
Lol!Not everyone suffers severe or any side effects. I was probably unlucky. But I no longer have any side effects. The nausea responded to medical cannabis oil with 20% THC and I then stopped the cannabis and the nausea was gone. The panic attacks also settled after 2 weeks on 50mg pregabalin. I reduced pregabalin to 12.5mg as it also reduces sweats.The patch is notorious for stopping after 4/5 days. Too many people on here report it!
Many people keep the old patch on BUT add a new patch at day 4 or 5 to avoid this.
So try that before switching to a higher dose. But Dr Murphy will need to agree to the change in prescription to a new patch every 4/5 days.
I have no idea why neurologists prescribe the patch. It releases a steady amount each hour, which is ideal for constant pain; But RLS follows the dopamine cycle which is why RLS is worse in the evening and night when dopamine levels drop. So a pill is better suited.
The pill releases the majority of the active ingredient during the first 11 hours. So if you take the pill around 9 or 10 pm, it is highly effective at covering the RLS until 8 or 9 the following morning. And there is no loss of effectiveness at day 4/5.
The mechanism of action of the patch compared to the pill is so different, it's difficult to get the equivalent dose exactly. However 10mcg patch releases 240mcg over 24 hours. That would seem to equate to 0.24 mg pill. But Buprenorphine comes in 0.2 or 0.4mg pills. So probably switch to 0.4mg pills and you can start by cutting it in half and take 0.2mg at 9pm. If RLS breaks through during the night, take the other 0.2mg ( it will work within 30 mins).
Well there we go Joolsg I was correct that you are fountainhead, you’ve just proved it in your reply 🤣, but a big thank you for a very full and detailed answer. In a sticky position at the moment as Doctor Christopher Murphy is ill having just returned from holiday and I need additional medication before I go away a week on Friday. His temporary Secretary is wonderful and endeavouring to sort it out via an alternative Neurologist, Professor Silverdale who I have consulted in the past, but he doesn’t specialise in RLS. Fingers crossed and for other patients of Doctor Murphy who may be trying to contact him. This is what happens when a specialist in RLS is unavailable through holiday or illness no other Neurologists in the department are qualified in RLS.
I’m not surprised Doctor Murphy is I’ll, he has clinics in a private hospital and National Health Patients in 3 other Hospitals, poor man must be working all hours available.
It is terrifying HipHop1972.I always worry that my surgery will stop prescribing OR that the area bans it. We can only get one month supply so anything that gets in the way, like doctors away or supply issues and we're stuffed.
I do hope it can be sorted.
Buprenorphine is banned in many countries so make sure you check the rules and have a letter from the GP/neurologist confirming it has been legally prescribed.
I know it's impossible to take any Buprenorphine into Japan, even if you have a prescription.
Thanks for the reply Joolsg and I’m now in that position. I previously posted that I could see the light at the end of the tunnel and the sun was shining, well I’m now watching as explosive charges are being placed at the mouth of the tunnel and I’m still inside. Doctor Murphy’s secretary is being an absolute trooper, she has spoken to Professor Silverdale wi shares an office with Doctor Murphy, he specialises in Epilepsy and passes RLS sufferers on to Doctor Murphy and visa versa. The issue is that the Professor can’t write a prescription that’s previously been authorised by Doctor Murphy as it’s a controlled drug. So nothing can be done until Doctor Murphy is back at work. This is my 3rd week trying to renew my prescription, it usually comes in a 3 month pack from the hospital via courier but he was on holiday when I had 4 weekly patches left, I now have just 1 seven day parch left and I go on holiday, in this country on the 15 Nov.
As you say terrifying if your consultant is away on holiday or I’ll, that illness could be long term, who knows, so I feel I’m walking a tightrope without a safety net. So I hope he’s back at work by Monday before I either fall of the tightrope or they blow the exit from the tunnel up. I’m sorry Doctor Murphy is I’ll, but selfishly hope it’s not serious
Absolutely. It's crazy. My GP can issue prescription for controlled drugs but I know your GP surgery is dreadful. Normally I'd suggest begging the GP to issue an emergency 1 month prescription. However, that is a problem with your GP.Fingers crossed it can be sorted.
I just want every other RLS patient to get the same result. Dr Buchfuhrer made a video for RLS-UK and it's on the website. He makes it clear that 95-98% of patients can be RLS free with the RIGHT doctor using the RIGHT tools.
I have had a look for that video - am I being blind? I'm going to email Mum's gp now, following their appt (so far she's said she'll be 'open' to look further) - might be useful to add in!
My resting heart rate has always been extremely low, even though I do no exercise. It's normally 52 to 54. I actually had increased heart rate. Anything above 70 and I really notice it. It would shoot up to 150/160 sitting down.That's settled now as my body has adjusted to the meds.
Also, ask for numbers after blood tests. Doctors do not know that RLS patients need much higher serum ferritin and serum iron than the general population.That's why iron therapy (pills or infusions) is first line now.
What other meds are you currently taking and where do you live, as Buprenorphine is difficult to get in many countries and in parts of the UK.
Gabapentin can help many BUT there are research papers showing gabapentinoids do not help after years on dopamine agonists.Also, make sure you're taking Gabapentin correctly. At night only and in split doses of 600mg 2 hours apart.
Taking 600 at 10 am, 600 mg at 3 pm and 600 mg at 8 pm.
When I started, wad taking 600 mg at 4pm, 600mg at 6 pm and 600 mg at 8 pm - but waking up was literally impossible. Literally. When I spoke to the neurologist, he said it wasn’t surprising as it has sedative effect, so asked to spread it throughout the day (morning and afternoon).
Taking 1200mg gabapentin during the day is a waste of medication.The 600mg you take at 10am and 3pm will not be helping your nighttime symptoms.
Have you tried 600mg at 8 and 600mg at 10pm? You would need to drop the 10am dose by reducing slowly by 100mg every few days. And then monitor to see whether it's too sedating.
You could also consider switching to pregabalin instead and take 150mg in the evening. Although it's in the same class of medications, the side effects can be slightly different.
Great, thank you Joolag! Was considering reducing the dose gabapentin anyway. Might try dropping the morning/afternoon dose slowly, or moving the afternoon dose to later in the evening, that would make sense. Thank you!
By the way in looking back at your replies, You replied 9 months ago to one of your own posts 11 months ago. Nobody will see that since people usually only look at replies to posts for 1 to 3 days ago. And I might add that was a hell of a way for you to do the reduction but I am glad you are off it. I assume you were completely off it months ago and your symptoms have settled.
Buprenorphine does not work in the same way as the DAs and though withdrawal if needed is not pleasant but if done very slowly if no where like withdrawing from a DA.
My RLS is completely controlled by gabapentin. Are you taking it the correct way? Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.
If you later decide to come off gabapentin, do not just stop it. Reduce it by 100 to 200 mg every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.
What is the delay in getting a full iron panel? You were trying to get it a year ago. You say the tests were fine before but what is fine for others is not fine for those of us with RLS. Be sure you ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
It is very strange to have symptoms in your arms and during the day. That is more typical of withdrawal symptoms from rotigotine which is why I asked if you have been off it for awhile and your symptoms have settled. Sometimes this can take several months or more especially reducing the way you did. Are these symptoms what you had before you took DAs?
It's also possible that your dopamine receptors were damaged by taking the DAs in which case the gabapentin won't work.
However the most likely possibility is you are taking a medicine or OTC supplement that is make your RLS worse. If you are taking any I may be able to provide a safe alternative.
Yes, off ritigotine completely. It took me probably a month or two to go down to 0 back in March. This is not to say I’d recommend anyone do the same in such a short period of time - unless you fancy an A&E visit. This was back in March (ish). So now for more than 6 months on gabapentin alone 1800mg (+ circa 1g of medical cannabis). Would not want to increase gabapentin any more. Taking 600 at 10 am, 600 mg at 3 pm and 600 mg at 8 pm.
When I started, wad taking 600 mg at 4pm, 600mg at 6 pm and 600 mg at 8 pm - please don’t do that - waking up was literally impossible. Literally.
How would you reduce gabapentin in 100mg/200mg doses? Neurologist did say that he’d recommend reducing by 100 mg but tables do come in 300mg, so he said need to go by 300mg.
Got an appt with the neurologist but nothing new. They messed up the blood tests and just said: well, if you don’t get a letter for bloods again, just call the hospital. So will be calling hospital again.
Thanks for suggesting dipyridamole. Neurologist doesn’t have any other suggestions, so will need to do own research.
I can’t recall having symptoms in my arms before DA really. Started mostly while I was on DAs. Currently on and off but still there. Same with day time RLS - mostly since augmentation, just constant. Not taking any supplements or medicines.
The only difference gabapentin makes is that it somewhow masks the symptoms. They’re still there but not as horrific as they would be if I was off all meds. It’s bad but bearable. It’s just that I still cannot sleep, cause RLS is there, every single night.
Gabapentin comes in 100 mg capsules. Since you are only taking 600 mg at night it is not surprising you have symptoms at night. You might want to try increasing the nightly dose to 1200 to 1800 mg the usual effective dose for RLS according to the Mayo Updated Algorithm.
I strongly suspect your symptoms are the result of your too fast withdrawal from rotigotine especially since you are having daytime symptoms and didn't have them before. That could also be why the gabapentin hasn't worked better.
When I started, was taking 600 mg at 4pm, 600mg at 6 pm and 600 mg at 8 pm - so 1,800 mg between 4-8 pm. This was after a few weeks of starting (started from 900mg to begin with). But I literally could not wake up. Missed work a few times, couldn’t remember what happened it the morning. The neurologist just laughed - he said it wasn’t surprising, as I was meant to be taking the dose throughout the day, hence splitting the dose now in the morning, afternoon and evening. Just followed Dr’s advice…
I’m surprised if day time symptoms are due to ritigotine… 6 months later… wow, it must have been a hell of a drug!
You might not need 1800 mg at night and with a lower dose you might not have the problem of not being able to wake up in the morning. And if you do you can take adderall or ritalin. Taking either one of them in the morning they will wear off before night.
You don't need gabapentin other than at night because one generally only has RLS at night. Doctors will prescribe it that way because it used to be only prescribed for neuropathy. In your case you do need it during the day because of your symptoms.
But Dr. Buchfuhrer an RLS expert and one of the authors of the Mayo Algorithm says that can happen and it is commonly believed by the experts that that can be the case.
In the Restless Legs Foundation quarterly magazine NightWalkers in the Fall 2021 issue on page 14 it says " In the Garcia-Borreguero study, RLS patients with augmentation who stopped taking dopamine agonists and were then prescribed an alpha-2-delta ligand were compared to RLS patients who only took an alpha-2-delta ligand to manage RLS symptoms. The RLS patients who previously took dopamine agonists did not respond as well to alpha-2-delta drugs (gabapentin, gabapentin enacarbil, pregabalin) as patients who never took dopamine agonist drugs. It has been hypothesized that the dopamine agonists left permanent damage, preventing them from getting to their baseline symptoms prior to dopamine agonist administration."
Unfortunately most doctors in most countries do "happily prescribe DAs without 2nd thoughts" because they used to be the first line treatment for RLS and they have not kept up to date.
Thank, you for the link to this paper, Sue. I appreciate it. I live in Germany and refused to take Pramipexol (pills) and the Neupro-patch (Rotigotin) which my former neurologists advised me to take. Now I should officially take Pregabalin which my new neurologist recommended me 1.5 years ago. I took it now with mixed results.
Yes, I'm pleased to reply and say I get complete relief from taking Buprenorphine. For me no more than a single 0.2 mg tablet. I've had the usual side effects of nausea, constipation and some daytime tiredness but these have abated over a few months and now cause next to no problem. Long term I don't currently see a problem, any fears are overwhelmed by the ability to have sleep again.
Yes my husband had very bad RLS, reading your description sounds just like he was. He has been on buprenorphine patch for just over 4 weeks and it is truly unbelievable. I can't recommend it highly enough. After a small glitch in first week he's now sleeping like a baby, 8 hours or so uninterrupted EVERY night!! He's so much better physically and mentally n getting back to his old self. I know it's still early days but here's hoping🙏🙏🙏.Go for it, n good luck x
I have has RLS since I was 36 & I am now 74. I had tried every drug going & yes pramipexole & neupro patches but nothing was working & I was at my wits end.However, joining this forum has been a life saver. The knowledge of Sue & Jules and the encouragement & help I have had from everyone on the forum has been second to none.
I did not want to go on an opioid but it was Jules who said to me "have courage, Simkin, give buprenorphine a go" and I did and it has changed my life.
I have had one whole year on 0.2 buprenorphine and no RLS. Bliss oh bliss!
Like you, over the years I have tried everything and received very little relief over 40 years.
With great thanks to Jools and this group I finally got off pramipexole, after three years, and have been on Buprenorphine, .6mg for the past five months. Amazing results and now I very very rarely get restless legs. It has been a life saver for me.
Keep going as I believe there is a solution for ever.
Hi, I'm sorry to hear about your issues with the RLS. Have you ever tried no sugar and no carbohydrates diet? I have recently tried it and first 2 nights I had very bad RLS but after that it settled
Hi, I get great relief from 10mg of Ocycodone (longtec). Took a while to build up but once it did its been great. I wish you luck in finding something that works well for you!
Thank you! Same here with no caffeine, but probably need to look at sugar as well in the diet! Zabka also suggested no sugar no carbohydrates diet above.
Completely, it is commonly caused by inflammation of the nerves caused by foods in the diet, You can google 'foods that cause inflammation' for the foods that affect everyone but there are foods which individuals find problematic like dairy, seafood, nightshades, artificcial preservatives etc. Then there could be yeast and other infections.
I've completely eliminated my RLS without drugs by concentrating on lowering my inflammation. The first thing i noticed was an intolerance of artificial preservative E202, then I became ware of foods that cause oxidative stress and most recently I found that even butter can cause RLS.
Tramadol works great. I’ve suffered since childhood. Undiagnosed until about 20 years ago (I am 68). This forum has many people who agree with the wondrous effects of tramadol. I think it’s a crappy drug for regular pain relief but it does something that helps the neurological pain. It has been a miracle for me since the first day I took it. Best of luck to you.
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