National Opioid Register USA

[Joolsg]

Dr John Winkleman at Massachusetts General Hospital is a world expert in RLS and has set up a National Opioid Register in the USA to study long term low dose opioid use for RLS. He has asked for more people to take part and you do not have to be based in the USA. If you are currently taking an opioid ( tramadol/ oxycodone/ codeine/ morphine/ methadone) then please use the link below to register. It is a very simple process- an initial phone call followed by a one hour phone call ( Dr Winkleman’s assistant Julia Purks will call you using whatsapp or internet call) and thereafter 6 monthly email questionnaire. The study aims to show opioids help RLS and the dose does not increase over many years.

It will help doctors and legislators understand that long term low dose

opioids are essential for refractory RLS, especially after Augmentation.

Dr Winkleman feels strongly that most doctors do not understand RLS or Augmentation and the biggest challenge is to educate doctors and neurologists who prescribed dopamine agonists and increase the dose, which he equates to pouring gasoline on a fire.

Please sign up, even if you are not in the USA, as what happens in the USA will influence what happens here in the UK and in Europe.

massgeneral.org/rls-registry/

[LotteM]

Thank you Jools. Good find. I will certainly contribute. Dr Winkelman is indeed one of the leading RLS researchers. Sounds like a good study.

[Joolsg in reply to LotteM]

I signed up about 15 months ago and they didn’t mind that I was in England as they wanted evidence of opioid use and dose and history.

Almost 90% of participants so far are on opioids because they augmented on dopamine agonists.

I listened to The webinar this evening- it’s available if you’re a member of RLS foundation USA. They are having a march in May to Washington to raise awareness of RLS and to campaign for opioids to be made available ( so many are being denied access because of the addiction crisis in the USA).

Dr Winkleman says he was responsible for the original Mirapex trial and it only ran for 12 weeks. He feels guilty because the appalling consequences of Augmentation weren’t discovered until much later. That’s why he has set up this long term study, although he stressed that his patients have not experienced side effects even after years on the same dose of opioids.

[Madlegs1 in reply to Joolsg]

I've joined this survey from Ireland a year ago, due to your post. Very glad to be contributing to any research on long term opiate use.

[Joolsg in reply to Madlegs1]

Thanks Madlegs.

[Pam34 in reply to Joolsg]

Sounds a great idea. Sorry I can’t take part, I’m no longer on Tramadol, but I urge everyone who can to do so.

I expect that at some point my Pregabalin may cease to work and I will either need to supplement it or replace it with an opioid.

So I’ve a vested interest in this!

Pam

[Joolsg in reply to Pam34]

I asked a question- if I develop tolerance to OxyContin, can I switch to another opioid. Dr Winkleman said all opioids work on the same receptors in the brain but , if that happens, he would switch his patients to methadone. It’s his preferred opioid because it doesn’t cause euphoria/high and is long lasting.

The only problem is it’s not available in the UK for RLS but that may change if this study is published and accepted in USA- maybe???

[Pam34 in reply to Joolsg]

We can but hope! It’s how long these changes take to happen that’s the concern. But there won’t be any changes if we don’t do anything!

[Anne_liz]

I have taken codeine 30mg every night for last 10 yrs. It completely stops my Rls. However I now have medication induced headaches which were disabling at times. Have now reduced Codeine to 15mg, which still works for rls, and taking beta blockers to reduce headaches. This has been quite successful. I have certainly not become addicted to codeine. If it was not for rls I would stop taking it immediately. I am in UK and got codeine prescribed by GP. Did not see neurologist and only found out by chance that codeine worked when was prescribed some for a few days after undergoing a minor operation in hospital.

[Joolsg in reply to Anne_liz]

Definitely helps. Dr Winkleman discussed codeine in the webinar which will be available on the RLS foundation website to listen to if you are a member.

[rls_optimist]

Thank you for this, Jools! Two questions:

1. Does one have to be taking only an opioid to participate in the study, with no other medications? (I take methadone plus gabapentin.)

2. Do you know if Friday's webinar by Dr. Winkleman on opioid treatment for RLS has been recorded and posted on the RLS Foundation website?

[Joolsg in reply to rls_optimist]

You can take part in the survey if you are taking many meds as long as one of them is an opioid.

The webinar can be accessed from the RLS foundation website.

Dr Winkleman actually discussed the benefit of taking an alpha2delta ligand alongside an opioid and said it works very well and often better than an opioid alone. He also adds in a benzodiazepine if necessary and stressed that all could be kept at lower doses than required for other conditions. It was a very helpful webinar.