Dr John Winkelman, a top RLS expert based in Boston has set up a website for health care professionals to visit.
If you're having trouble with your doctor in the UK or the USA, refer them to this website.
They may not believe we have more knowledge than they do, but hopefully they will take notice of Dr Winkelman.
The open resources on here looks good Jools, but do we know for sure that non-US doctors will be able to give "healthcare provider licensure upon registration" that will be acceptable to the site?
Good point. I'll ask Prof. Toby Richards to try accessing it, to see if it works for UK doctors.
Otherwise I'd just thought of using the Contact Form on the site just to ask the question...
I sure don't like his reference for the long term treatment to sciencedirect.com/science/a... For example "Evidence is insufficient to make a recommendation on the use of gabapentin in the long-term treatment of RLS/WED." and "Pregabalin is effective for the treatment of RLS/WED for 1 year (Level A). There is insufficient evidence documenting the effectiveness of pregabalin to make a recommendation beyond 1 year of treatment." but worse "Pramipexole is effective for the treatment of RLS/WED for up to 6 months (Level A) and probably effective for 1 year (Level B). Pramipexole is also possibly effective for up to 10 years in the 10–40% of patients who tolerate therapy and do not experience augmentation or loss of efficacy." It does say under the critical updates that "alpha2-delta ligands should be first-line agents for chronic persistent RLS, with dopamine agonists considered more second-line drugs. " But unless the health professionals read everything . . . I sure wouldn't refer a doctor to this website. It might just convince them that DAs are A-OK, and certainly not that almost everybody will eventually augment.
That's a 2013 paper, written by Garcia Borreguerro and Winkelman. The Mayo algorithm has superceded this earlier research paper.
True, and he does link to the Algorithm. But as Sue points out I see that his 'Resources' also link to his joint-authored papers on Long Term Treatment dating from 2013 and 2015. I'd wonder whether these might confuse the narrative
It shouldn't be out there at all since it is outdated.
I think the algorithm they have published is out of date The most recent Mayo algorithm is dated DOI:doi.org/10.1016/j.mayocp.20...
They do have that one . BUT I am a member of the RLS Foundation and the link under Resources --> Symptoms and Diagnosis leads to the RLS Foundation site where it says the FDA has approved 4 medicines to treat RLS - Ropinirole (Requip), pramipexole (Mirapex), gabapentin enacarbil (Horizant) and rotigotine (Neupro). While this is true they just say "several drugs approved for treatment of other medical conditions have undergone clinical studies with RLS patients and provide symptom relief when used “off label.”
WOW, I guess I will have to again write Karla about this.
I am past my bedtime but will look into this further tomorrow because again it implies treat with dopamine agonists or the expensive Horizant which since it lasts 24 hours is not needed by most,
Hi Joolsg. Thank you so much for the link, I will definitely pass it onto my GP. I’d actually piggybacked an update on me and where I’m at. It didn’t make positive reading but then a went and lost it and can’t bear to go through again but will report once I’ve got all th blood and other test results and spoken to Doctor Thomas’s week commencing 8 jan. I hope 2024 is a better year than 2023 for all of us, what was it Tiny Tim said in Charles Dickens book a Christmas Carol .
God Bless us every one 🤗
Cheers for this.
thank you for the link! I will offer it to Dr Cooper!
And under Validating the IRLS section: " 6-month double-blind trial of rotigotine transdermal system in patients with moderate to severe idiopathic RLS [7]. Patients who were treated with rotigotine for up to 6 months achieved significantly greater improvements from baseline in IRLS sum score and Clinical Global Impression item " Again it would encourage the doctor to prescribe a dopamine antagonist.
And under iron it is recommended to take iron twice a day when we now know hepciden is released when iron is taken preventing the full absorption of additional iron for 24 hours. It is mentioned later on in the article but not applied to the recommendation. There is no harm in taking it twice a day at least - it just will take longer to raise ones ferritin.
He does include the Mayo Algorithm and Critical updates, but I am concerned the doctors who access this website will still overlook those and prescribe dopamine agonists.
He ought to include a READ FIRST section that clearly states that dopamine agonists should no longer be prescribed and include the warnings about compulsive gambling, augmentation, etc.
I agree with your concerns. Dr Winkelman does make it clear in all his recent talks, research articles and webinars that he is anti dopamine agonists.He has included a lot of older research papers, pre Mayo Clinic Algorithm.
I have his research assistant's email so will pass on the concerns.
Please do - a READ ME FIRST would go a long way to helping. Thank you.
I just wrote to Karla Dzienkowski, who is Executive Director of the Restless Legs Syndrome Foundation: Recently a post on the forum indicated that Dr. John Winkleman has set up a site for health professionals to learn about RLS at rlscurbside.org/resources/. Naturally I went out there and was quite disturbed about a number of things I found , but the link under Resources --> Symptoms and Diagnosis leads to the RLS Foundation site where under Treatment --> Medications it says "the FDA has approved 4 medicines to treat RLS - Ropinirole (Requip), pramipexole (Mirapex), gabapentin enacarbil (Horizant) and rotigotine (Neupro). And there is a line of space between each making them stand out. While this is true it just adds "several drugs approved for treatment of other medical conditions have undergone clinical studies with RLS patients and provide symptom relief when used "off label." Anyone reading this, doctors or patients, would think that DAs are the correct medication or Horizant which is expensive and not appropriate for most since it lasts 24 hours. I know this is not what the RLS Foundation would want doctors or patients to see. And the "several drugs . . . off label" are not even mentioned even though they are the first line treatment for RLS. Please, please, please consider changing this.
well I seem to be 33% of the doctors using rlscurbside....
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