Looking for comments on this opening info sheet.

[RLSLearner]

I am a doctor who got interested in RLS over 6/12 ago when my wife's RLS went crazy when she was trying to use Phenergan (sedating antihistamine) to sleep. After a couple of sleepless night she was a mess and complained "And there is no treatment for restless legs!!". I thought that could not be right and now spend many, many hours every week researching RLS. This forum has been great. Obviously the management of RLS is not a secret, just that most doctors - even the ones meant to know how to manage it - dont know how. I am looking at every option I can find. We will be starting in Australia. One big delay is creating a training program for doctors.

Here is my first draft of part of what I think patients should get sent when they first make an appointment. Maybe it is too negative? Wanting to set realistic expectations. Hopefully lots of patients will be rapid fixed with oral/IV iron, other supplements, removing aggravating meds, life style changes, some exercise and won't have the issues that makes people come to a forum like this. Here it is -

Thank you for asking the RLC to assist you with your restless leg journey. We know that for some people Restless Leg Syndrome (RLS) is a minor, occasional inconvenience and that many doctors and non-medical people feel the same. But we also know that for many people with RLS it can be a huge burden on their lives and be as significant as any other major illness comparable to cancer, epilepsy or mental illness.

I wish I could tell you by taking a certain supplement, doing an exercise, wearing some device or even taking a particular medication we could guaranty that your RLS would stop tonight permanently. But just by being on this website means that that has not been the case for you so far and unfortunately will not likely be the case for you into the future.

There are so many factors involved in predisposing to, aggravating and causing RLS in each person that there is no certain way in any one person to stop it. There are some basic things that everyone with RLS should address right from the start – avoiding medications known to aggravate RLS and taking iron/increasing your iron stores. These 2 simple factors substantially help many RLS sufferers. Improving your diet – reducing sugar, preservatives, caffeine, alcohol and many other changes have been associated with better outcomes. Low Vitamin D is associated with worse RLS (supplementing with vitamin D has not been shown to significantly help but we usually suggest it as a minimal risk way of shifting the balance in your favour). Moderate exercise has been shown to be beneficial but extreme exercise shown to aggravate.

Only once we have considered these and many other lifestyle factors do we start looking at medications. All mediations have potential side effects. All medications. How any particular medication will adversely affect any particular patient cannot, for now, be reliably predicted. Just because one group of patients are using something and getting great results does not mean you will too. Similarly the fact that someone had some significant issue that they blamed on the medication does not mean that you will have that side effect.

Many of the medications used in RLS are powerful drugs and can have very significant side effects. Some side effects are predictable, manageable, and worth putting up with if the benefit with your RLS is sufficient. Some side effect we can expect to reduce over a period of time and we will ask you to try and persist for a while to see if they improve. Unfortunately individual side effects of ‘good’ medications is the most common reason to struggle with finding the best treatment for you. Please understand and expect this. Even if you get a great improvement with the first supplement, exercise, device, medication you try - it is to be expected that at some time RLS will return and we need to start again in finding the best management for you.

Many of the medications used in the management of RLS are used “Off Label”. Off label means using an approved medication for an indication (reason, illness) that it is not the approved indication by the Australian Register of Therapeutic Goods (ARTG). It is not illegal and the way many medications are used for many conditions. The medication may be approved for that indication in another country or has been shown to be beneficial in published studies but not put through the (rigorous and expensive) process of assessment by the ARTG.

There is a group of approved medication for the management of RLS in Australia - dopamine agonists (Rotigotine,Pramipexol, Ropinirole). They can significantly improve the symptoms of RLS in most users. However over time they can be expected to worsen the symptoms very greatly – a condition called Augmentation. Follow the link to learn more this most dreaded outcome in RLS. So even though it is the on label ARTG/TGA approved medication for RLS we try to avoid it if at all possible. This is in line with the consensus of RLS experts world wide.

We want you to know there is hope. We want you to know there are doctors that do know about RLS and care deeply about improving the lives of people who suffer with it. We want you to understand it may not be a simple fix but we will stick with you and keep working towards getting you into a better place. There is always more that can be done.

You may see this message more that once while with us. It contains a lot of useful general concepts about managing RLS. Follow the links to more detailed descriptions of your points of interest. Use restlesslegclinic.com.au as your source of trusted information on RLS. There is a lot to read there.

Thanks for getting through this. Maybe something to read while night walking...

[ChrisColumbus]

Good progress. Am I right in thinking that 'the RLC' = Restless Leg Clinic, and that this draft is preparatory to setting up the website?

restlesslegclinic.com.au/

This September 23 paper by three NSW profs seems to be leaning towards similar principles:

www1.racgp.org.au/ajgp/2023...

[Madlegs1]

That's a great letter and should be very encouraging for patients on their "last legs". Offers practical guidelines and some realistic hope.

In addition to the "stuff" to avoid, I would be inclined to ask them to keep an intake diary to help pinpoint possible triggers.

All the very best with your project.

[RLSLearner]

Yes this is just one of lots of info sheets on every subject I have info on hopefully leading to a body of useful education.

RLC = Restless Leg Clinic , keep the name/website simple.

Chris - seen the Aust article but they still focus on dopamine agonists as first line therapy.

[ChrisColumbus in reply to RLSLearner]

The NSW paper actually does say ref DAs: "Once considered first-line therapy, expert guidance suggests that the alpha-2-delta ligands should be trialled first, unless there are significant contraindications. This recommendation comes from the increased recognition of augmentation and impulse control disorders that might complicate the use of dopamine agonists."

[ChrisColumbus in reply to RLSLearner]

BTW, just to clarify: will the RLC be a free information source/charitable operation or a commercial venture? Either good of course

[RLSLearner in reply to ChrisColumbus]

Commercial venture in that there will be a cost to patients. Significantly less than US/UK experts and set up as a Social Enterprise/Certified B corp .

[ChrisColumbus in reply to RLSLearner]

Best wishes for what I'm sure will be a great resource!

[SueJohnson]

Great job !!!

Just a couple of suggestions:

Change "will not likely" to "may not"

Change "taking iron/increasing your iron stores" to "checking your ferritin and taking iron if needed" as taking iron without first checking if needed may be dangerous if their TSAT is over 45% so they are on the borderline for Hemochromatosis

[RLSLearner in reply to SueJohnson]

may not - yes not so negative.

Patients new to RLS will probably not know what ferritin is and iron levels are complicated, as we know. There will be whole sections devoted just to iron, this is just an introduction . Protocol is to get iron studies (and a bunch of other tests) before their first appointment.

[SueJohnson in reply to RLSLearner]

OK - how about taking iron/increasing your iron stores if needed"

[Joolsg]

Excellent. There is increasing evidence that dopamine agonists cause permanent damage to the dopamine receptors.Dopamine agonists need to be banned as first line meds and kept as a last resort, where all other meds have failed, or the side effects are intolerable.

In the UK, RLS -UK is hoping to get Parliament to listen and ask NICE and the NHS to update their guidance.

It's a slow and tortuous process.

Good luck over there in Australia.

[restlegs1]

I think this reads well and has a good balance of 'scientific' information and reassurance. I look forward to attending your clinic, once is it operational!