As mentioned recently I have my nhs uk neurologist appointment soon and I’m gathering all my paperwork and evidence.
I’ve looked at the Mass Gen study and the other study that Sue passed on.
Is there anything that I can use that I can start a conversation about Buprenorphine in UK.
I never took DA’s, it is red listed here but things work differently in Scotland.
Thank you as ever 🙏
neurologyadvisor.com/report...
This is Dr Berkowski's Buprenorphine study. It's not a 'gold standard' study.
But tell your UK neurologist that there are now at least 10 of us in the UK taking it very successfully with miraculous results.
Show him our names and posts.
I take 0.4mg and my IRLSS score went from 38/40 to 0/40 overnight.
It is still 0/40 over 3 years later.
HipHop73 is on patches. Biscuitface takes sublingual pill.
And tell your neurologist that I've been trying to get a UK trial of Buprenorphine for the last 2 years. King's college London recently said they can't do it because they don't have time or spare resources.
Barts will take part in Stage 3 trials.
I've sent requests to Liverpool University and Dr Robin Fackrell.
Maybe your neurologist would like to arrange trials.
RLS-UK can probably help arrange funding.
Thanks for all of that Joolsg!
Yeah that’s the study I meant, couldn’t remember what it was called. It seems to be mostly talking about folks coming off augmentation though which I’m not so don’t know if that will make a difference.
Your results are amazing, I’m really happy for you. I’ll see what this guy is like and I’ll suss him out.
Much appreciate all your support in here!
I wasn't augmented. I had been on 25mg Oxycontin and 150mg pregabalin for 5 years after getting off Ropinirole. I had an iron infusion as well. My RLS was very, very severe and I'd be woken at least 3 times a night with RLS.So, Buprenorphine literally saved my life.
I had decided there was no point continuing with such torture, night after night.
Total relief of all symptoms from day 1.
It should be more available.
And we don't get addicted or develop tolerance.
Dr Winkelman's opioid study is proving that.
Ah, my mistake.
What you’re describing is how I feel. Waking at least 3 times a night, every single night for 4 years. I’m a shadow of my former self, and don’t feel there is much lower I can go.
Definitely contemplated giving up and certainly cannot continue like this for much longer.
I’m terrified that if this guy is not knowledgable in RLS/open to discussion then I don’t know where to turn next.
I’m so grateful that there are people who not only understand but can give us hope.
I’m struggling to find the bit in Dr Winkelmans study on Buprenorphine? Or is it about opioids in general?
Thanks again.
It is about opioids in general BUT the study shows that in the last 2 years, 6% of participants have switched to Buprenorphine. It is becoming more popular amongst US doctors as it has a long half life of 24 hours, so covers RLS for the whole night and during the day.I do hope your doctor is not a dinosaur, refusing to listen to the latest evidence and research.
But perservere and do NOT let him try another dopamine agonist. Many in the UK try to persuade patients that Rotigitone has a lower rate of augmentation. That is nonsense and everyone on this site who has been switched to Rotigitone experiences augmentation again very quickly. And then it's even harder to get off the poison.
Buprenorphine is the only thing that has ever worked for my diagnosis of extreme restless leg syndrome, it wasn't actually confined to my legs but went into my arms and neck.
Hi David, I wonder what happened at age 20 to kick off your RLS so extremely? An injury? Any comorbid illnesses? SSRI or an anti-psychotic?
Hi Desert Oasis,My RLS was extreme at times when I was 21, due to being on 200 mg of imipramine, a tricyclic antidepressant.
It was a regular thing when I was put on ssris.
I do recall having pain in my legs as a child a lot, and my mother calling it 'growing pains'.
I know that DAs can damage dopamine receptors...I wonder if the 43 years of antidepressants worsened mine ?
No, not at all. But let’s not believe me. Let me find you an article.
We don’t want the mania, but we with RLS definitely want all the other results of SSRI use ncbi.nlm.nih.gov/pmc/articl...
Interesting article:But wait !
It was interesting they noted that antidepressants INCREASE dopamine and can cause mania...
And bloody Dopamine agonists can cause Impulse Control Disorder...
And what is characteristic on Mania ?
Loss of impulse control.
Hmmm.
It seems impossible doesn’t it that SSRIs would down-regulate the dopamine receptors the way DAs do?Just the opposite, right? They seem to up-regulate them. Exactly what SSRIs do to the brain, especially in terms of serotonin and serotonin reuptake inhibitors, is not something a lot of us on here are well-versed in, except that in terms of antidepressants, allegedly Wellbutrin is RLS friendly. With all that said, I personally doubt the SSRIs worsened your receptors, even after 40 years of use.
I’m glad you found a solution, great to hear.
I am Robin from the U.S. and I take the sublingual Buprenorphine 1/2 to 1 mg every night, along with Neurontin and a very low does Xanax, and it has been a lifesaver. Best of luck to you!!!!!
Hi I've been on it for about 2 yrs or more I think. I was on 0.8mcg x2 twice daily although I stated on only two a day and went up . After a knee replacement and a sore thigh I ended up on 10mcg slow release patch which has helped with pain to I stil take a pill in eve ro be on safe side as I had it really bad after my operation which can happen hopefully it wears off. I tried all the other drugs over the years and luckily my doctor in Hampshire England let me have Bupromorphine. Good luck
Hiya, I’m going to ask to try buprenorphine. I’ve augmented on pramipexole just managed to wean of it. I’ve had about 4 ten minute naps for last few nights I’m exhausted!! 😩
I hope you have some luck with your neurologist 🤞🏼😊
Thank you, I hope you do too!
Buprenorphine
Buprenorphine
Buprenorphine/Naloxone (Suboxone)
