After 10 years with pramipexole and gabapentin I have reached the end of the line with augmentation and I am considering moving to bupenorphrine. Can someone please tell me if there is an authoritative study, or preferably a hospital protocol, recommending bupenorphrine, which I can show my GP?. The Mayo Clinic protocol seems to be pretty discouraging or lukewarm about bupenorphrine, in contrast to the enthusiasm for it on these pages. Anybody’s help would be much appreciated. Thanks in advance!
(PS. I am in New Zealand)
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Wairahi
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There have been no gold standard trials of Buprenorphine anywhere in the world yet.I have tried to get trials in the UK for the last year, but have been refused by 2 hospitals. Bart's London do prescribe Buprenorphine or methadone for refractory RLS, and have said they'll take part in stage 3 trials, if I can find a main site for stage 1 trials. I'm still looking!
Chris has sent you the links to Dr Berkowski's study on Buprenorphine. However, it doesn't comply with international gold standard trial requirements, so is regarded as anecdotal.
It's infuriating.
My RLS went from 38/40 to 0/40 overnight on a very low dose of 0.4mg Buprenorphine sub lingual pills.
I am in NZ too, in Auckland - nice to meet a fellow Nuer.
I went cold turkey in December, not realising the consequences. It was sheer hell. After 4 days and nights with no sleep, unable to lie down for more than a couple of minutes at a time, my husband had the bright idea of giving me my bike helmet to wear as I was bumping into walls and objects as I staggered about the house. The nights were endless. On the fifth day, I began hallucinating. My cognitive function declined and couldn’t carry out a proper conversation. I couldn’t think, couldn’t see properly as I was “resting” one eye at a time. I began to micro sleep, falling asleep on my feet for milliseconds at a time. I fell off a chair, I fell off the toilet, I had lots of bruises and my husband was scared I would really hurt myself. It was truly awful.
Then I began to fall asleep for a couple of minutes at a time, then 5 minutes, 10 minutes, half an hour.
I can’t really remember what came next but I tried gabapentin the Pregabalin and codeine.
My son helped me do some research and came with me to my GO where I requested methadone.
It’s now almost 6 months on and I have titrated up to 8.75 mg methadone and am getting 6-8 hrs sleep most nights. I still have some breakthrough symptoms which I am hoping will disappear when I get to 10 mg next month, which I think will be my highest dose.
So … I wouldn’t advise going cold turkey!
Sorry about the long post, but I hope it helps someone.
You may find that the breakthrough will stop over time. I went off Prami very slowly while taking Buprenorphine, and even then the final decrease caused breakthrough symptoms that lasted 4 months. It was mild and usually stopped with a quick walk, so I just put up with it, and it has stopped. It takes time for the dopamine receptors to “reset” and start to function again. Many will say the damage is permanent, but I have always bounced back( I’ve been on and off it 5 times over the last 35 years).
I think the first step might be to have a chat about it. Personal information deleted for your own security. Please use the Chat function to discuss further. Thank you. Kaarina
One thing I think we could do is inquire how to win the confidence of the moderators of this healthunlocked webpage/group so that when other NZ’ers pop up here they will mention our newly-minted group to them.
As to purpose, I don’t know about you, but I might suggest that two important purposes would be 1) to lobby the relevant government agency (Medsafe?) to move quickly to approve the latest treatments (eg buprenorphrine if it hasn’t already been approved which I doubt) and 2) to lobby the RNZ College of General Practitioners and the RNZ College of Neurologists to make their members more aware of the seriousness and prevalence and varieties of the condition.
Actually there might already be an RLS patient advocacy group in New Zealand, I guess we should find that out first.
I’m 72, retired, married.
I look forward to hearing from you. Frantically busy this week but perhaps you could give me a shout next week?
Hi Waihiri and Mongolia, to het in touch between the two of you, you’d better use the chat function. Maybe copy this message into chat and delete it here. We all can read your phone number and you may not want that. The chat is confined only to the people participating in it. It can even be used for a (small) group.
And good initiative to set up an advocacy (and support?) group in NZ.
As Mongolia2020 said it is dangerous to come off pramipexole cold turkey.
Gabapentin won't help you while you are on pramipexole so don't give up on it.
You are on twice the maximum dose of pramipexole which is .5 mg.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
Ask your doctor for a prescription of .125 tablets. Then to come off pramipexole, reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.
The beginning dose is usually 300 mg gabapentin but you are already on it. It won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks I suspect it will control your symptoms. If not wait a few more weeks and if it is helping but not completely controlling your RLS then you will need to switch to pregabalin which can be taken all at 1 time. You can switch directly and the equivalent dose is 300 mg pregabalin.
Take the gabapentin 1-2 hours before bedtime as the peak plasma level is 2 hours. Since you need more than 600 mg take another 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. Since you need more than 1200 mg, take the last 600 mg 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)" but you can take more.
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Hi Wairahi, I too have to spend time pacing around the house at night - I have legs that twitch and kick even though I'm on 400mg of Pregabalin which is not really working - and your descriptions of wearing a bike helmet and resting one eye at a time had me laughing, although I very much understand. I too have microsleeps, leaning against wardrobes and walls. I listen to downloads of Night Tracks on BBC Radio 3 which is really wonderful.
Hi Wairahi, I similarly reached an end of the line with ropinirole, then pregabalin and then gabapentin. I came off them very slowly. I have RLS worse in my hands, arms and shoulders but can have the symptoms all over my body at times, generally evenings and when going to bed. I do also have Carpal Tunnel and I Thoracic Outlet Syndrome which I believe contributes to some of the sensations in my hands, arms and shoulders. I take a number of supplements such as B12, B Complex, Iron and Magnesium and believe they help, I can give you a full list of what I take if you're interested. I went to my doctor to try oxycodone as this is licensed in the UK for refractory RLS but was prescribed codeine to start with to see if that helped; I take a low dose of codeine before bed and have found a consistent improvement in my sleep. It does appear to hold back my symptoms and allow me to drop off and get a good nights sleep. The slightly drowsy feeling/side effect is also a benefit and seems to work like a sleeping tablet but without making my RLS symptoms worse. I don't have the drowsy feelings in the morning. Andrew
Whilst limited Buprenorphine trials opiods have some good evidence. Professionals who are hesitant to prescribe opiods for RLS may prefer to prescribe Buprenorphine over trialed opiods because A) you dont get a high B) Consequently it has lower abuse rates and C) its prescribed intent is to help you get off opiods. My path was I was on Targin which is the only opiod in Australia that has TGA approval for RLS (so can get on PBS) but they wouldn't extend use past 3 months due to opiod prejudice so they gave me Buprenorphine and as I'm technically coming off opiods it can be prescribed on PBS even though it is off label for RLS. Link follows but if doesnt work google 2 year opiod study RLS ... thos is what I presented together with Mayo proceedings to firstly get Targin and then Buprenorphine when they tried to take me off Targin (I was refered to QEH pain clinic for anyone in South Australia) (google.com/url?sa=t&source=...
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