Dopamine Agonists no longer first line treatment of RLS

[YodaDog]

Can anyone point me in the direction of reputable UK, US national health guidelines regarding the above? Also approaches to withdrawing off DAs.

I'm wanting to arm myself before visiting my new doctor. Thanks.

[Hidden]

Not sure where you got that info but the UK still maintains DA's as first line treatment:

cks.nice.org.uk/restless-le...

although it does add in that Pregabalin and Gabapentin are first line also. Might be worth researching Targinact (can't remember what it is in US).

Good luck.

[YodaDog in reply to Hidden]

Thanks raffs. I believe I read it on here somewhere, but maybe I'm just imagining that I did (sleep deprivation?!).

[Hidden in reply to YodaDog]

I think it may be the RLS experts across the pond who are not using dopamine meds as first line treatments, but i am a bit hazy on that. That could have been mentioned on here somewhere by someone. But most doctors still do use them as first line treatment, as most dont know or understand what augmentation is and when they keep increasing people's doses to ridiculous amounts, then you know they havent a clue.

[Hidden]

As raffs states. the UK national guidlines on RLS still still recommend dopamine agonists as a first line treatment for RLS.

However, to their credit, you will note that they guide prescribers to make people "aware" of the risk of "loss of efficacy", "augmentation" and "Impulse Control Disorder". which might dissuade some prescribers.

The guidelines DO recommend Gabapentin or Pregabalin as an alternative. So a reasonable prescriber should respond positively to a request for this rather than for a DA as a first option.

I have yet been able to discover any US national guidelines. This is probably because it is a federation of states rather than a nation in the same way that the UK is and there appears to be no national health service.

These links might be helpful

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/145...

hopkinsmedicine.org/neurolo...

[YodaDog in reply to Hidden]

Thank you

[Hidden in reply to YodaDog]

Apologies. I assumed that you would be able to follow the link to the UK guidelines which raffs posted. However, you may be unable to access this website which is UK restricted.

Note NICE is an agency that produces guidelines that all UK National Health Service prescriberrs should adhere to. This ensures that treatment is standardised and evidence based. The RLS guidelines are due to be updated in December 2020.

The reference for the guidelines is

National Institute for Health and Care Excellence 2016

Restless legs syndrome - Scenario: Management of restless legs syndrome

URL : cks.nice.org.uk/restless-le...

Here is an excerpt

What drugs should I consider to treat restless legs syndrome?

• First-line recommended drug options for people with frequent or daily symptoms are either:

o A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or

o An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications).

• Before commencing drug treatment, ensure the person is aware:

o Of possible treatment complications. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs).

o That if a dopamine agonist is taken, the person (and, ideally a carer or close family member) should be warned about the possibility of an ICD developing. Symptoms of an ICD should be sought on each review consultation.

o That treatment for idiopathic RLS aims to control symptoms, and is likely to be needed lifelong. However, it is reasonable to have short drug holidays every year to see if a remission or easing of symptoms has occurred.

• Drug dosages should be kept to the minimum required to ease symptoms as the higher the dose, the greater the risk of augmentation.

• Factors that may influence the preferred choice of drug include:

o A dopamine-receptor agonist is generally preferred for people with severe symptoms, who are obese, have co-morbid depression, are at increased risk of falls, or have cognitive impairment.

o An alpha-2-delta ligand is generally preferred for people with severe sleep disturbance (disproportionate to other RLS symptoms), co-morbid insomnia or anxiety, RLS-related or co-morbid pain, or a history of an ICD.

o Consider rotigotine transdermal patch if the person has significant daytime symptoms as it has a long duration of action.

• A weak opioid (such as codeine), taken intermittently or regularly (depending on symptoms), is an alternative, particularly for people with painful symptoms of RLS. However, take into account the risk of opioid dependence.

• For people with significant sleep disturbance, consider a short course of, or intermittent use of, a hypnotic (benzodiazepine or z-drug).

[Hidden]

This in an excerpt from an online article I believe was written by Dr C J Earley a recognised expert in the study of RLS based at the John Hopkins RLS Quality Centre USA

"A clinical trial of the effects of pregabalin versus pramipexole in RLS patients over 1 year showed pregabalin to be significantly better than pramipexole in improving the severity of RLS symptoms. The alpha-2 delta drugs are an effective treatment option for many patients with RLS and should be considered one of the choices for first line treatment of RLS."

hopkinsmedicine.org/neurolo...

[YodaDog in reply to Hidden]

Thanks again.

[Graham3196]

There seems to be some difference between the "official" view and the current opinion of the leading researchers.

I think most people would agree that Doctor BuchFuhrer in USA was among the leading authorities and most reports from people who have met him or been assisted via email regard him very highly.

I haven't had time to search for all his quotes but from what I have seen over the last few years I think he would now say that getting your ferritin right was the first line of attack. Get your ferritrin up to 350.

If fixing your ferritin is not successful then I think the first drug he would recommend would be methadone. This seems to be almost impossible to get in some jurisdictions but we should be collecting evidence and all be writing to our political representatives to make their life miserable until they make methadone available. I think it appears to be a question of morality or ethics or something non-medical that is obstructing this. I haven't seen anything that says the very low dose of methadone that might help us is dangerous in any way. It couldn't be money. Without any evidence I would guess that methadone would be one of the cheapest drugs around.

There was a post recently from someone in Queensland, Australia, who apparently got methadone without any hassles. I haven't asked my GP if he would prescribe it for me because my RLS is generally under control by following a diet.

Cheers

Graham

[YodaDog]

Thanks Graham. I am taking iron supplements and my ferritin has risen to over 100 and I intend to keep taking it. I am eliminating gluten, dairy, MSG and processed and artificial sugars from my diet.

[Hidden in reply to YodaDog]

Iron supplements are a good idea. A ferritin level of 100 sounds as if you're on the right track. Also your dietary restructions sound reasonable.

If one American expert recommends an opiate as a first line treatment for RLS, whereas another suggests an alpha 2 ligand, it isn't really a contradiction. It doesn't mean one is right and one is wrong. Both are effective, the difference may be a matter of "expert opinion".

If anyone has the choice between the two, they can make that choice, in which case it may be a matter of personal preference, having first been informed about the merits and drawbacks of each. I believe Dr B recognises that. I have corresponded with him and he supported my switch from Pramipexole to Gabapentin and never mentioned Methadone.

The UK guidelines do not mention methadone and whether this is good or bad, it isn't licensed for RLS in the UK.

Targinact, IS licensed for RLS and is the only opiate that is. However, in practice it would be very difficult to persuade any doctor to prescribe it, especially without first having tried "first line" treatments (DAs and Gabas ) and had them failed. What happens in other countries is largely irrelevant.

You did ask for reputable UK guidelines and the "official" NICE guidelines are as reputable as you can get here. They aren't based on any individual person's opinion.