DR Winkleman’s RLS Latest Report

[Joolsg]

I have asked Dr Winkleman’s assistant Ben Wipper for permission to share the latest opioid registry report & he has confirmed I may do so.

mcusercontent.com/068feaf31...

[Shumbah]

Thank you so much for sharing 🙂

I would love to know the different opioids people on the study are on .

[Joolsg in reply to Shumbah]

I've attached a link to the 2019 summary and it sets out in much more detail the opioids participants are taking. Methadone and buprenorphine are in there. If you would like to participate, I've include the link. You do not have to be based in the USA. I take part and I'm in the UK. There are also members of this site from Ireland and The Netherlands taking part.

massgeneral.org/rls-registry

gallery.mailchimp.com/068fe...

[Shumbah in reply to Joolsg]

Thanks Joolsg

I applied on line before I meet Prof Winkelman in Nov2019 and thought I will wait until I see him in person due to time zone difference for phone call with nurse was proving difficult.

By the time of my visit the numbers had been filled and capped at 500 he said he was hoping for 200 and was surprised at the numbers .

🙂

[Eryl]

I wonder why he calls it 'treatment' when it's not treating the rls, but masking the causes and symptoms of rls?

[LotteM in reply to Eryl]

'Treatment' is what you do to 'treat' the symptoms. 'Cure' is when you 'treat' the underlying cause. Which is as yet elusive, as we all know.

Well, that is how I interpret the words. But I can be wrong, of course.

[Eryl in reply to LotteM]

Cure may not be elusive for everyone. I found that mine was caused by a high carb diet. I have not experienced an episode for at least a year since I changed my diet

[Jumpey]

Cheers for posting. X

[martino]

Thanks for this. I use Tramulief which I think helps although my situation isn’t as clear as it could be due to me also having neuropathy. Dr B has suggested using methadone both to help with the RLS and also the neuropathic pain. I saw a neurologist on 11thNovember where amongst other things it was agreed I would be referred to a pain clinic. I still haven’t heard anything about this and have another neurologist appointment booked for 12th May. It is possible this will go ahead but on the phone. I hope to be able to discuss opioid use and raise the matter of methadone. I am not optimistic but .......

[Joolsg in reply to martino]

If in UK- they’ll refuse unless you find a truly experimental doctor willing to break rules. I asked King’s College Hospital for methadone and sent all the links. They are supposedly the UK top RLS experts. They refused on basis - 1. No tests done in UK 2. In cash strapped NHS - no money for tests.

Pharmaceutical companies won’t fund tests because methadone has no patent/licence protection so it’s cheap and they won’t make money. Conclusion = if one of us wins lottery we should fund private research.

I’ll keep fingers crossed that you get it.

[martino]

I go to the National Hospital in Queens Square in London. I am hoping that IF I speak to a neurologist who will listen I might have a chance. I will let you know what happens. I might just add here that I have all the signs of augmentation but I don’t know what is causing the problem. I have 2mg of Neupro with 300mg of Tramulief and 600mg of Pregabelin and don’t want to start fiddling about. A clean break to methadone might be an answer?

[Joolsg in reply to martino]

That’s a tough one because the patch and tramulief both cause augmentation and pregabalin has also been linked to augmentation ( although it’s rare).

I really hope Queens Square are forward thinking and listen to you. However, pregabalin should be reduced slowly as it can cause seizures and you are on a very high dose. You could do the straight switch for the patch and tramulief though.

Good luck.

[LotteM in reply to martino]

If you really think you're experiencing signs of augmentation, Martino, your attention should first go to the Neupro patch. You can reduce by cutting parts of the patch. It may help to start using (2) 1 mg patches and ten cut a small part off of one of them. The idea is that if you go slow, in small steps, the reduction is more tolerable. And don't take the next step before symptoms have settled after the precious step.

Incidentally, you take quite a high dose of pregabalin. I think the recommendation (by IRLSSG?) has a maximum of 300mg.

[Nlthomp]

Thanks for sharing Joolsg 👍🏼

[Insomniak]

Thanks Jools - very interesting