Here's Dr Buchfuhrer's response to Temgesic use

[puzzler1]

I asked Dr B if he had any evidence or studies to support Mrs P's request to have Temgesic prescribed for refactory RLS in the UK. I'll try to add the pdf he talks about, later on. This is his reply:

'The use of buprenorphine for treating RLS is relatively new so there is no literature on the use of this drug for treating RLS. However, a group of us have just written the second revision of the Mayo Clinic Algorithm guidelines for treating RLS and this will be published in the Mayo Clinic Proceedings Journal (which is a well-accepted prestigious journal) in the next few months and that will be the first official recommendation for using buprenorphine for treating RLS.

However, I am attaching our article on the appropriate use of opioids to treat refractory RLS. Since buprenorphine is much safer than regular opioids, it should be quite reasonable for any doctor to realize that buprenorphine should be even a better choice than regular opioids for treating RLS. I use buprenorphine extensively for treating RLS and have had excellent results with much fewer side effects than with regular opioids'.

Mark J Buchfuhrer, MD

Stanford University Sleep Disorders Center

[erinjee]

I have exchanged emails with him as well. I took his research with me to my first appointment for buspirone-really helped to have it with me.

[Sampsie]

I spoke to my consultant in the UK at Guy's Sleep Clinic about this, and he had heard of it being used, but he wanted me to start on a lower level opiate first. As it turned out, the Oxycodone that he prescribed has so far been successful for me and I am on a low dose of 15mg which I am pleased about. I do have nausea, a stiff jaw, and it prevents me from sleeping (ironic as it stops the RLS!), but I am also taking medical CBD which knocks me out so the two together are so far a good combination for me. Otherwise I'd be stuck.

From what I have read here, when I was looking at how other members have got on, some have been fine on Oxycodone and not buprenorphine, and some no good on Oxycodone but fine on buprenorphine. It's very interesting that he says buprenorphine is a safer option. I hope you find success for Mrs P. Everything crossed.

[rls-insomniac in reply to Sampsie]

Hi Sampsie. I see that you are in the UK. If you don't mind me asking, but how on earth did you manage to get a prescription for medical CBD? Was it prescribed to you for another condition? Regards. E.

[Sampsie in reply to rls-insomniac]

I found out through Raffs (now my favourite person :-)) about a government project called Project 21.

drugscience.org.uk/project-...

This link will tell you about it.

[rls-insomniac in reply to Sampsie]

Thank you, I'll have a read through. All the best. E.

[Joolsg in reply to rls-insomniac]

I’m also on medical cannabis through the same project. It helps with sleep but sadly it doesn’t stop breakthrough RLS waking me from that sleep! Buprenorphine is my next option as OxyContin 25mg only gives me effective daytime cover. Still struggling to sleep more than 3 hours at a time.

[rls-insomniac in reply to Joolsg]

I'm sorry to hear that medical cannabis doesn't seem to help you sleep through the night. How did you manage to persuade your consultant to prescribe buprenorphine? I'm also looking to change my medication again as I'm still suffering with symptoms most evenings. I also get breakthrough during the night or insomnia. I'm getting rather fed up with all this now. I'm going to try and see whether my consultant will prescribe buprenorphine. I'm not holding out much hope though but I've got to give it a go! I just don't understand why I'm not having much luck with my concoction of meds in addition to having had an iron infusion. Oh well onwards and upwards as they say. I'm trying to keep optimistic otherwise I'd probably be in tears! I do hope that the buprenorphine works for you. I know you've had a tough time with your RLS. I'm keeping my fingers crossed for you! 😊

[Joolsg in reply to rls-insomniac]

I have to wait 3 months before I can ask my GP for Buprenorphine because King’s College London want to see how the medical cannabis works first. A week in and I don’t think cannabis will make much difference. Sigh.

So the next step will be to send a detailed letter to my GP with research articles backing up Buprenorphine. King’s say they have no objections so I am hopeful the GP will agree to let me switch from oxycontin to Buprenorphine. It’s a lot cheaper and less ‘risk of abuse/addiction’ than oxy so how can they object???

I feel your frustration - the constant sleep disruption wears you down. The more people who manage to get prescribed Buprenorphine, the better chance we have of it being made available to all.

Hope you get some rest.

[rls-insomniac in reply to Joolsg]

Thanks. I hope you'll get some rest too and the buprenorphine. Let us know how you get on with it, once you've got it! 🤞

[puzzler1 in reply to Sampsie]

Thanks Sampsie. Glad to hear that you've found some improvement despite the side effects.

Surprised that the oxycodone doesn't bring you sleep. I'll keep you posted on our progress.

best wishes

[Heatherlss]

Waiting for that official recommendation to come out then.

Thanks for this. Made my day.

[B534967]

Has anyone found a dr in Seattle or WA state? Other city of interest is Ft Myers F for buprenprphine?

Jody

[Symbionforlife in reply to B534967]

Hello B534967,

Dr. Lucas McCarthy - Neurology - Virginia Mason - Seattle

[B534967 in reply to Symbionforlife]

Thank you so much! Greatly appreciated. So far taking iron supplements and Ropinirole is working but I would rather take something with lower long term impacts, I'm 71 and have dealt with RLS for the past several years. Thanks again, Jody