What about if you have Parkinson's and RLS?

[Jess123dog]

On the RLS UK website, on the page called

Managing your RLS with Medication

it says 'Carbidopa Levodopa is a dopaminergic drug and should be used with caution due to the high rate of augmentation (drug induced worsening of RLS) which occurs in up to 70% of patients taking it on a daily basis. For this reason, it should be prescribed only for intermittent use.'

But people with Parkinson's (PWP) are usually on these drugs. So should they (I) be concerned about augmentation?

There does not seem to be much info around about PWP and RLS yet RLS is very common in PWP?

Can anyone put my mind at rest. Just got home after a neurologist appointment where he suggested I start taking DAs because he thinks I am on too much Carbidopa/Levodopa. I declined.

[SueJohnson]

Yes you should worry. I gave you the other medicine for Parkinson's you could take instead which is safe for RLS.

[Jess123dog in reply to SueJohnson]

Sorry, what was that?

[SueJohnson in reply to Jess123dog]

Rasagiline (Azilect)

[Jess123dog in reply to SueJohnson]

He didn't mention that and it will be six months before I see him again. Thanks though.

[SueJohnson in reply to Jess123dog]

I'm sure he knows of it. It's just that for most PD patients carbidopa/levodopa is what is prescribed.

You will probably need to wean off it while starting Rasagiline (Azilect) just as you would wean off a DA.

[SueJohnson in reply to Jess123dog]

Can you get an appointment before that? I would think you would want to keep seeing him if you like him.

[Joolsg]

Which hospital are you under? Prof Alistair Noyce at Bart's is a PD expert & says he no longer prescribes DAs or Levodopa for PD.You might like to get a second opinion.

Out of interest- what does the Parkinson's charity advise when PD patients have both diseases?

[Jess123dog in reply to Joolsg]

I wonder what he advocates instead? The UK PD charity does not seem to advise anything that i can find.

[Joolsg in reply to Jess123dog]

Probably what SueJohnson has mentioned.Is there a PD help group on HU?

I know hundreds of PD patients have successfully sued their doctors for failing to warn them about the very high risk of Impulse Control Disorder on Ropinirole and Pramipexole.

Maybe there's a discussion on which meds are best when you have both RLS and PD.

[Jess123dog in reply to Joolsg]

I am under a neurologist in the North of England. I guess I would need to look at seeing him privately.

[markland]

Hello

My husband has exactly the same issue. We have seen 3 neurologists, 2 privately and cannot get any help. When his RLS is unbearable all they ever want to do is increase the C/L .

This thread is very helpful if Professor Noyce approaches problem differently.