NHS still recommending Dopamines - Restless Legs Syn...

Restless Legs Syndrome

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NHS still recommending Dopamines

Doghorse profile image
9 Replies

nhs.uk/conditions/restless-...

Astonishingly NHS is STILL recommending Dopamine Agonists as treatment for RLS. I read NICE has accepted that dopamines are not recommended but it seems NHS has not got the message & more importantly are misleading RLS sufferers & GPs who are still issuing prescriptions for drugs that incease RLS problems.

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Doghorse profile image
Doghorse
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Joolsg profile image
Joolsg

Yes. This is known to RLS-UK.Hopefully the woefully outdated NHS website will be overhauled soon.

The RCGPs told the BBC by email that they would be including RLS on the GP curriculum from August 2025 (they previously rejected RLS-UK campaign in 2019 and 2021 to teach RLS properly and stop prescribing DAs).

RLS-UK will try to be involved in the content.

Still a long way to go. But.... change is happening. At last.

BluesHealer profile image
BluesHealer

Hi, Doghorse,Could you please indicate where did you find the NICE statement where you read that NICE has accepted that dopamines are not recommended? This is important for me, because since I'm taking SINEMET (a dopamine agonist?) I'm feeling bad and it seems my RLS is getting worst when I recently increased the dosage. Kind regards and pls apologize myself for my poor English (... I'm a Portuguese language speaking native...)

Doghorse profile image
Doghorse in reply toBluesHealer

It was highlighted through RLS charity, they also state that new doctors training are being taught not to use dopamine, there is a wealth of RLS sufferers on this site that can confirm that dopamines cause and increase RLS

BluesHealer profile image
BluesHealer in reply toBluesHealer

Is Sinemet a Dopamine Agonist?

No, Sinemet is NOT a dopamine agonist. Instead, it is a dopamine precursor.

Sinemet contains Levodopa (L-Dopa), which is converted into dopamine in the brain.

It also contains Carbidopa, which prevents Levodopa from breaking down before reaching the brain.

This makes Sinemet different from dopamine agonists, which directly stimulate dopamine receptors without needing to be converted into dopamine.

However, Levodopa (Sinemet) can still cause RLS augmentation, just like dopamine agonists, when used for RLS treatment. Some RLS patients find that Sinemet initially helps but later worsens symptoms, leading to earlier onset, more severe episodes, or spreading of symptoms.

Doghorse profile image
Doghorse in reply toBluesHealer

no idea if it is a dopamine based famaly of drugs, but if it is don't take it

SueJohnson profile image
SueJohnson in reply toDoghorse

It is not a DA but acts like one.

JustVisiting23 profile image
JustVisiting23 in reply toBluesHealer

My experience may guide you: I was prescribed Sinemet by a neurologist. Soon required more as my symptoms began to affect my thoracic area, neck, and shoulders. As treatment for this. The Neuro increased the dose. She clearly knew nothing about augmentation, nor did I. I then went through a tough withdrawal experience. Sorry to say, but you are being medically mismanaged. With the rarest of exceptions, none of us should be taking DA’s,(or it’s precursor as stated in BluesHealers response), especially Sinemet which has the highest rate of augmentation.

BluesHealer profile image
BluesHealer in reply toJustVisiting23

Hi, JustVisiting23, you are absolutely right! I' m being medically mismatched. Fortunately, I had a recent consultation with a new neurologist who recommended me to leave Sinemet, progressively. I will report and as soon I get positive outcome. Many thks.

JustVisiting23 profile image
JustVisiting23 in reply toBluesHealer

I so relieved to hear that. All of us need physicians skilled in treating our maddening condition.

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