Intermittent RLS: why carbidopa/levod... - Restless Legs Syn...

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Intermittent RLS: why carbidopa/levodopa????

Petru profile image
10 Replies

Can anyone enlighten me as to why the Mayo Clinic suggests carbidopa/levodopa (sinemet) as prn therapy as opposed to ropinorole/pramipexole? I used to have persistent RLS (managed with ropinorole) which thankfully stopped after I stopped my SSRI. Now it’s intermittent and I can’t understand why I should use Sinemet rather than Ropinorole.

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Petru profile image
Petru
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ChrisColumbus profile image
ChrisColumbus

While the Mayo Algorithm does still reference carbidopa/levodopa for intermittent RLS, it suggests low potency opioids and benzos - this link takes you to the appropriate part of the Algorithm:

mayoclinicproceedings.org/a...

And of course as you know the Algorithm cautions against the first line use of dopamine agonists pramipexole, ropinirole and rotigotine for RLS, and I see that you successfully weaned off ropinirole.

Unfortunately, the Mayo Clinics do not entirely follow the Mayo Algorithm, and continue in at least some cases to recommend dopamine agonists.

Petru profile image
Petru in reply to ChrisColumbus

Thanks for your reply, Chris. What baffles me is that they recommend Sinemet for intermittent RLS, and another type of Dopamibe agonists for persistent RLS (second line) Why two different types of dopamine agonists?

ChrisColumbus profile image
ChrisColumbus in reply to Petru

You'll have read that it says "Because the action of dopamine agonists generally commences 90 to 120 minutes after ingestion, these agents are less helpful once symptoms have started and are rarely prescribed for intermittent RLS".

But why mention carbidopa/levodopa at all and then talk about opioids and benzos?

The Algorithm is a consensus document and we know that there were compromises: perhaps this was one? I don't know, perhaps someone else will enlighten us!

Petru profile image
Petru in reply to ChrisColumbus

I think the only instance where intermittent use of a dopamine agonist with onset of 90-120 min is useful is prior to air travel or theatre attendance or movies. Otherwise opioids or BZD.

ChrisColumbus profile image
ChrisColumbus in reply to Petru

I used to worry before going to the cinema or theatre or on a flight, but thankfully now I've identified my triggers and avoid them (and was thankfully never on a DA, or other RLS med) I don't have concerns. I hope that you get to control your intermittent RLS!

Badger2024 profile image
Badger2024 in reply to ChrisColumbus

I wear knee high compression socks on flights now. Game changer

Joolsg profile image
Joolsg

Good point. I suspect it's a 'compromise'.In your case, I would recommend you never use a dopaminergic drug again as you took Ropinirole consistently. Levodopa is mentioned in the Mayo Clinic Algorithm for intermittent RLS, a few times a month, presumably where no other dopamine agonists have been used. Your dopamine receptors will have been affected by Ropinirole, so to avoid augmentation, it would be better to use a low dose opioid, like codeine or tramadol, for occasional RLS.

There will be a new guidance out soon from the American Academy of Sleep. That will make it clear that dopaminergic drugs should be reserved for 'end of life' scenarios, where short term benefit outweighs the long term harm.

I suspect dopaminergic drugs will be stopped for RLS within the next 10 years as further evidence emerges on the damage they cause.

Petru profile image
Petru in reply to Joolsg

Thank you Jools. Do you think once you’ve taken it, you’re doomed? Don’t you think the receptors normalise after a while?

SueJohnson profile image
SueJohnson

It might also be because it is faster acting - 20 to 50 minutes and since intermittent RLS can't be predicted, one wants relief quickly. Just guessing.

RCHD profile image
RCHD

my husband tried one day of this years ago… had terrible terrible headaches, felt terribly doped up. Never took it again, threw the whole package away.

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