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A very interesting and helpful article by Dr Andy Berkowski on opioid use for refractory RLS and concerns about addiction.
Dr Berkowski recently did a study on Buprenorphine and believes it is the safest opioid to to use for RLS bevause of its low risk of respiratory depression and its long half life.
His website contains lots of webcasts and useful information.
Very usefull Jools, thank you for posting 
Great job 👍
Yes, very interesting, thanks, but the truth is that it`s the Doctors who should be reading this rather than us the Patients.
Absolutely agree. They should be learning the basics of RLS as well.
They were talking about opiates on the tv this morning and being addicted to them. I felt like getting in the screen and educating them on taking opiates where RLS was concerned !
Hi jules we have chatted before but im so desperate . Im 67 live in uk . Diagnosed with chronic rls 26 yrs ago and been on various D A 's since until I realised i had augmentation. Withdrawing was pure hell and I had many suicidal thoughts . My long marriage is taking the strain .I finally got off Ropinirole 4mgs last November .With a lot of begging and paying I now take 1800 mgs Gabapentin in the evening 2mgs Clonazepam around 8.30 and 10mgs Targinact before bed . All was going well and in fact daytime and evenings are pretty good but get into bed and off the crazy legs start. I dont speak to pharmacist at surgery til March but she would like me off everything ideally !! I see a neurologist on the nhs in March if it doesnt get moved again but he didnt inspire me and knew very little about rls . Any suggestions greatfully recieved. The Gaba makes me sleepy in the evenings and i could sleep til mid morning but i cant .I generally drop off around 3am . Thanks Angela
You have only been off Ropinirole for 3 months. Withdrawals can last months.
My first concern is why on earth does the pharmacist want you off all meds? RLS is a severe, life long disease. Most people with severe RLS need meds to control the symptoms.
Back to your meds.
Gabapentin 1800mg has to be taken in 600mg doses 2 hours apart. Targinact has to be taken every 12 hours according to the medication leaflets. You're only taking one dose. Targinact/Oxycontin is supposed to last 12 hours. It DEFINITELY doesn't. That has been confirmed after the Oxycontin scandal in the USA. For RLS patients, unless Oxycontin is taken every 4 to 6 hours, it causes mini opioid withdrawals for most of us. The main symptom of opioid withdrawals is RLS.
Your RLS cycle is very common after withdrawal from Ropinirole. Best sleep is between 3 or 4 am and midday.
So, continue with the gabapentin, but split the dose. Take 600mg just before bed, 600mg 2 hour's before that, and 600mg 2 hour's before that. If you find it difficult to take so many separate doses, consider switching to 250/300mg of pregabalin which can be taken in one dose 2 hour's before bed. Ask for Targinact 5mg and take 5mg at 10am and 5mg at 10pm. It might prevent the mini opioid withdrawals.
I presume your GP has arranged full panel iron blood tests? What is your serum ferritin and percentage saturation?
Raising serum ferritin can improve your RLS.
Which neurologist are you seeing in March? Some know zero.
If the severe RLS continues every night when you get into bed, you might do better on Buprenorphine. You could then stop clonazepam, gabapentin and Targinact. You can make a straight swap from Targinact to Buprenorphine, but should slowly reduce the gabapentin to avoid withdrawals.
Buprenorphine is a long half life opioid and very effective at low doses.
Hi jules , my pharmacist seems to think I should be off all drugs , after many long conversations I thought she was finally getting it but no clueless about rls . Im seeing Dr Roswell Martin . In past saw Robin Fackrell who kept upping my ropin ! I had booked a phonecall with him but the fee was crazy so cancelled and I let him know ! I take the Gabapentin correctly. I did take the 2 x 5mgs Targinact 12hrly but I couldnt function so thats why I take it at night. Bloods were all fine for Rls tho cant find figures .I did ask for Buprenorphine but he said there hadnt been enough study on it so reluctant to give me . Have you got anything I can take with me to prove differently. He said he has used Methadone on patients in the past . It takes over your life doesnt it ? Getting off Ropin was hell but best thing I ever did . Thanks again Angela
Ps I did try.Pregabalin but it made me feel very low so switched back to Gaba . 5 week wait to speak to pharmacist !
My GP surgery makes me have a medication review with a pharmacist every 6 months. Very nice people but they know even less than UK doctors about RLS. Stand your ground and tell the pharmacist to look at RLS-UK website, the NHS and NICE guidance which mentions gabapentinoids and opioids.
So if Im successful by getting Buprenorphine , I presume I wean slowly off the Gaba , Clonazepam and Targinact quite slowly ? How slowly ? Thanks Jules, great help
You make a straight switch from Targinact to Buprenorphine (or methadone) as they're opioids. No need to slowly reduce Targinact as Buprenorphine will instantly replace it.But it's best to reduce gabapentin and clonazepam slowly to avoid any withdrawals.
Ignore your pharmacist. If a neurologist accepts you need medication, then the pharmacist should listen to them.Methadone is a very good option. If Dr Roswell Martin will prescribe Methadone, take it. It will cover your RLS 24/7 & enable you to reduce the clonazepam and the gabapentin slowly. Like Buprenorphine, it has a long half life and that is why it is SO effective.I attach a study on Buprenorphine which might help and Dr Berkowski latest blog which explains Buprenorphine has the lowest risk.of respiratory depression. Show it to Dr Martin and mention that many members of this forum, including several in.the UK, take low dose Buprenorphine pills very successfully. I take 0.4mg and my RLS score dropped from 38/40 to 0/40.
Also ask for the ACTUAL numbers for serum ferritin and iron. You will be told they are 'normal' even if they are too low for RLS.
Exactly. This is something that we can either print and take into our GP surgeries, or send the document to the practice manager for distribution to the practice doctors.The practice I belong to has 27 GPs!
We need to take action to fascilitate change and the internet is a brilliant tool to hasten that.
Thanks so much to those posting evidenced scientific information thats needed to inform doctors and medics
Thank you so very much, I find your post very helpful. I finally asked my GP for methadone for my severe RL (I was terribly reluctant, as was she). But...so far...25 days on 5mg, it has dealt to my RL well and I can finally sleep! I feel a hint of RL occassionally but would like to stay on this dose as do feel a little sluggish during the day. I hope I can continue like this for some time! This is why I am grateful for your post - it gives me some confidence that I'll be ok on this medication. It was a message I needed to hear just now. I will show my GP too.😊
Great, thanks Joolsg
You might to ask Kaarina to add this to the one on the sidebar on Opioids For Treatment.
finding a doctor who prescribes opioid for RLS
opioids
Severe rls
