My response to the AASM Guidelines For RLS

[SueJohnson]

I am posting this in the hope that it helps in forming your own response and if you agree with some of them, including them in your own response might help them pay more attention to them.

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The title should not be "guidelines" but be a review of studies and what they show and their recommendation as a result of these studies. It should note that these are not inclusive of all of the at least partially effective treatments for RLS and PLMD. The reason is that new doctors will look at this and think it is the ultimate guideline and not look further nor even read the discussion.

There should be a third category of conditional neutral between conditional for and conditional against. "Conditional against" implies don't prescribe it.

For Bupropion this study isn't as large but it does show it improves RLS. Https://pubmed.ncbi.nlm.nih.gov/21737767/

It would help if there was an explanation for each as to why it was conditional. An example is conditional against valerian when this study shows it improves RLS. Https://pubmed.ncbi.nlm.nih.gov/19284179/

It has lots of references for the discussion. There should also be references for the studies that the recommendations are based on.

Under "there was insufficient and inconclusive evidence to make recommendations for the following" clonidine is mentioned but this is a study that shows it helps pubmed.ncbi.nlm.nih.gov/865...

Also under "there is insufficient evidence ..." Tramadol is listed. Tramadol is an opioid and as it is mentioned in the discussion opioids in general help RLS. I could understand being conditionally against it as it can lead to augmentation.

In The Discussion:

The discussion is excellent but busy doctors are likely to just do a quick read of the recommendations. So it should be emphasized at the beginning of the Guidelines that it is important that they read the discussion or at least follow the line number as mentioned below.

There should be a reference to the line number in the discussion in the recommendations where important - for example ferrous sulfate and oxycodone so doctors won't think that only ferrous sulfate and oxycodone can be used for iron or opioids. And for PLMD as I mention below.

Although the Mayo Algorithm Updated Algorithm on RLS is in the references it should be specifically mentioned as many doctors and patients consider it the bible on RLS.

It mentions constipation with iron but doesn't mention iron bisglycinate which largely overcomes this.

It should also mention that it the elemental iron in the product that matters.

It should mention that short acting opioids that last 4 to 6 hours like oxycodone can cause mini withdrawals if not taken that often, as many doctors will just prescribe enough for one dose a day.

It should mention that Horizant is a 24 hour medicine where for most people it is only needed at night so gabapentin or pregabalin which are also cheaper are preferred.

For PLMD it should say that the prevailing opinion is that it is treated the same way as RLS.

Https://merckmanuals.com/profession...

Https://uptodate.com/contents/manag...

Https://medicalnewstoday.com/articl...

A line item reference from "there was insufficient and inconclusive evidence to make recommendations for the following" in the discussion could include ketamine,, Oxcarbazepine, Lamotrigine, topiramate, Depakote, Sodium valproate, divalproex sodium, Epilim, Alti-Valproic, levetiracetam, Buspirone, botox, Bambuterol, Naltrexone, Piracetam, Propranolol, Modafinal and note that they have helped at least some people.

At end it says "the TF is confident that these new guidelines most closely reflect the current best evidence-based recommendations and that most clinicians should feel comfortable using this CPG as a basis for clinical management of RLS" It should add "with the help of the discussion."

[Merny5]

You wrote an excellent and thorough response Sue, thank you!

[ziggypiggy]

Well done Sue. My suggestion, near and dear to my heart, was that they include a section with guidelines on the best current ways to treat RLS patients with comorbid depression and anxiety, as there seems a high correlation between them.

[RiversW]

Thanks, I have sent a response as well. Rivers

[Madlegs1]

Good job , Sue.

I sincerely hope they take it all on board.

Otherwise you'll just have to submit a minority report from the majority of sufferers.

[Joolsg]

Thanks Sue.

[metalone]

Thank you for speaking up for so many of us who might not be able to articulate the appropriate response right now. It means more than you can probably imagine. I just want to make sure you know that what you have done gives us all a little bit more hope. I can’t say thank you enough for that. 🙌

[soundofmetal]

Thank you for taking the time to review the guidelines and to prepare your response - it is all very helpful and much appreciated. Knowledge is indeed power and having the excellent information, support and advice provided on this site is a great comfort - and part of a coping strategy for me and I’m sure many others x

[Lysonic]

Well done, Sue. We all owe you a thanks!

[DicCarlson]

Wow - that's as complete a response as anyone could do - well done!

[John_naylor]

Well done, thank you on our behalf. I don’t have the ability or knowledge to do a response.