Massachusetts Opioid Register 5 year Update

[Joolsg]

acrobat.adobe.com/id/urn:aa...

Dr Winkelman's Massachusetts Opioid Study has just released its fifth year results.

What is very interesting is how many people have switched to Buprenorphine.

Feel free to share the results with your medical doctors.

[Ticki]

Thank you for your research.👄

[RiversW]

Thanks Jools, this is fascinating. Is it possible to see the results of previous years?

[Joolsg in reply to RiversW]

Yes, by looking at the main website.

massgeneral.org/rls-registry

[MrCrow]

where can I find the latest algorithm recommended by AASM. All I see in their PDF are statements like conditional for/against.

Is there no step wise algorithm that recommends something as first line and then something else as second line if/when it stops working.

Also correct my understanding, its gabapentin and pregabalin first. In case it stops working you then need to try opioids right? And dopamine agonists are not to he touched at all?

[Joolsg in reply to MrCrow]

Yes, that's correct.There is no algorithm.

And you are right. It's a very strange layout and an odd presentation.

Many European RLS bodies have expressed concerns at both the presentation AND the lack of robust clinical evidence to back up many of the conditional/strong recommendations.

I suspect the authors used their own extensive, personal experience as Sleep doctors, rather than any gold standard trials.

But the main problem is that there are so few drug trials for RLS!

[Greenleaf360 in reply to Joolsg]

Ive been involved with this study since day 1. All participants complete an online survey every 6 months. I would expect the questions and responses are available at the source.

[TheDoDahMan]

Good stuff...thanks, Jools!

[Qalba]

Thank you so very much for sharing this study. It is one more study of support we can share with our mdical caregivers. Unfortunately even most sleep specialists are uninformed and still will not help us get the treatment we so despartly need.

[Insomniak]

Thanks Joolsg

[LotteM]

Thanks for posting and sharing, Jools. The link in my mail (to massgeneral.org) didn't work, but now I can read. Looking forward to their paper later in the year.

[Jumpey]

Thanks.Dr. Jose Thomas told me that it's being pushed/ proffered in the US because it's so cheap.

[Joolsg in reply to Jumpey]

It's highly effective AND as it's generic and cheap, very helpful for our friends over the pond who usually have to bear the high cost of RLS meds.It's also very cheap for the NHS. So we are saving money for the NHS by using a more effective drug that is a lot cheaper than the dopamine agonists or Targinact.

[Madlegs1 in reply to Joolsg]

Unfortunately it isn't available in Ireland.As far as I can make out.

I'm still waiting on my pain clinic appointment after 18 months.

[Joolsg in reply to Madlegs1]

It is Madlegs. My friend in Dublin managed to get it.I suspect it will be similar to the UK though- some GPs refuse even if neurologist asks them to prescribe.

[Madlegs1 in reply to Joolsg]

Thanks. I'll investigate further!👍

[Joolsg in reply to Madlegs1]

Message Involuntary Dancer.

[teakabeagle]

Thank You Jools. Can't seem to get it to print out, maybe blocked until presented.

Although Buprenorphine is listed in the AHFS or DrugDex compendia, it only has off label use for acute and chronic pain. Not sure what goes into getting something listed for off label use. I'm going ahead with the appeal and maybe I can get some infor on that. Although Horizant is in the AHFS for use in RLS, Medicare usually denies it due to cost in California. they will cover the DA's , of course!

[Joolsg in reply to teakabeagle]

It's a worldwide struggle! Buprenorphine is really cheap- a lot cheaper than dopamine agonists.