Rotigotine Holiday !: Hi everyone, I’ve... - Restless Legs Syn...

Restless Legs Syndrome

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Rotigotine Holiday !

AngryKen profile image
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Hi everyone, I’ve just started a rotigotine holiday as ordered by consultant to fix the start of augmentation. Been given 25mg Pregabalin to take at night. I was on a 3mg patch. Got to do this for a month !! Currently going through hell ! Any suggestions?

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AngryKen
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I try not to interfere with the medical care of others but it’s very likely you’ll need more than 25mg of Pregabalin. I’m certainly not recommending you do that on my advice but if possible I’d try to contact your neurologist or GP to discuss how you are feeling. I should add that a max of 25mg is the dose if you have certain medical conditions so it is essential that a dr who knows your specific situation advises you

AngryKen profile image
AngryKen in reply to

Many Thanks I will take your advice.

You may be suffering withdrawal effects from stopping the rotigotine. This is especially if you stopped taking it suddenly.

It should not be stopped suddenly, there are warnings about this. It should be in the information leaflet.

To quote one such leaflet

"Do not stop using Neupro without talking to your doctor. A sudden stop could lead to a medical condition called ‘neuroleptic malignant syndrome’ which could be life-threatening."

To minimise withdrawal effects it's best to taper off the dose of the patch slowly. So slowly in fact that it can't really be done in a month!

From personal experience and advice I received from Dr Buchfuhrer an internationally reputed RLS expert, the gabapentinoids e.g. pregabalin aren't particularly helpful in alleviating dopamine agonist withdrawal effects.

In any event it is considered that the usual effective dose of pregabalin is between 150 and 450mg. 25mg would appear to be simply ineffective.

see this link (click on "pregabalin").

uptodate.com/contents/treat...

also see this link

cks.nice.org.uk/topics/rest...

The usual starting dose is at least 50mg (see link above) and it has to be titrated up.

The other thing about pregabalin, which is widely accepted is that it takes 3 to 4 weeks to start working. If that's true, logically, it would have been better to start the pregabalin 3 - 4 weeks before stopping the rotigotine. If you only started it after stopping the rotigotine then it will have only really started at the end of your "holiday". Then presumably you'd stop it.

Pregabalin has its own withdrawal effects.

A better way of reducing withdrawal effects, as advised by Dr B and other experts is to take an opioid. This would need to be prescribed by a doctor. The UK guidelines on RLS do suggest that codeine can be prescribed for RLS for a short time.

Some people resort to taking an over the counter paracetamol and codeine. This is NOT advisable.

This is just my personal opinion, but

The idea of taking a 4 week break from rotigotine doesn't seem feasible because of the above factors. It might be more feasible to take a longer break, e.g. 3 to 6 months.

In which case, how would you manage during the six months.? Well it's possible that if you took a recommended dose of pregabalin that it would relieve your RLS symptoms. If that were the case, why bother starting on rotigotine again?

The risk of suffering augmentation due to taking pregabalin is signifcantly less than taking a dopamine agonist. If you start taking the dopamine agonist again, augmentation may occur again. It seems you'd have to repeat the holidays. That means possibly repeating what you're eperiencing now!

The other things that could be doneare -

- to have a blood test for "ferritin" and if this is below 75 then it can be helpful to start on an oral iron supplement.

- to look if there is anything which may be making your RLS worse (exacerbating factors)

See this link

cks.nice.org.uk/topics/rest...

This same link suggests some options for dealing with augmentation. In my opinion the third option is best. I'm biased however, this is what I did and it worked!

"If there are no apparent exacerbating factors, and symptoms are severe, stop the causative drug. An option is to switch to a non-dopaminergic drug such as an alpha-2-delta ligand,"

Whatever you decide to do you must of course consult your doctor. It always helps however, that you are well informed yourself.

This is a good resource

cks.nice.org.uk/topics/rest...

AngryKen profile image
AngryKen in reply to

Thank you so much, I will discuss this with my Doctor.

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