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Restless Legs Syndrome

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switching from Neupro patches - it’s time to get off them

BPN28 profile image
12 Replies

I’m going to start the tortuous journey of coming off the awful Neupro patches. After 23 years of taking dopamine agonists I am dreading it. I think I want to switch back to pramipexole and then start decreasing the doses very slowly.

I am on 3mg Neupro patches. Can I switch over immediately to taking to pramipexole? I was previously taking 3x 0.088mg tablets each night.

Thanks!

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BPN28
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12 Replies
SueJohnson profile image
SueJohnson

It would be better to switch to ropinirole. You would need 4.5 ropinirole to be the equivalent of a 3 mg patch. The equivalent to pramipexole would be 10 of your .088 pills. It will take twice as long to come of the pramipexole than the ropinirole.

You said you have my advice which covers the ropinirole, For pramipexole you would substitute 1/2 of a .088 tablet for the .25 ropinirole in my advice.

Joolsg profile image
Joolsg

Are you experiencing drug-induced worsening ( augmentation)?If so, please file a report via

yellowcard.mhra.gov.uk/

Uk neurologists keep prescribing the Patch and incorrectly tell patients that it won't cause augmentation.

I haven't yet seen anyone on this site or the various RLS help groups who Hasn't experienced augmentation.

But unless we report it, the neurologists will keep prescribing it.

There's a withdrawal schedule on RLS-UK website under 'useful resources' and on the Instagram account.

Go slowly and you may need a low dose opioid to help you through the brutal withdrawal.

Also arrange full iron panel blood tests and raise serum ferritin above 200ųg via pills every other day or an iron infusion.

BPN28 profile image
BPN28 in reply toJoolsg

Yes - the Neupro patches have made my RLS much worse. I have to take codeine tablets to cope with the symptoms. I will fill in a yellow card and tell the neurologist. I’ve had an iron infusion which doesn’t seem to have helped.

Thanks for the advice. Maybe I’ll just try cutting the patches slowly down instead.

Joolsg profile image
Joolsg in reply toBPN28

That is one way to do it. There are many who have cut the 1mg patch into ¼ and reduced by a quarter patch every 2 weeks.Go slowly.

Iron infusions often do not work if patients have been on DAs for years. The DAs cause permanent damage to dopamine receptors.

SueJohnson profile image
SueJohnson in reply toBPN28

My advice would be if you cut them is to divide them into sixths by drawing lines on them and reduce by 1/6 every 2 weeks as that is equivalent o the .25 mg ropinirole.

Busunsc713 profile image
Busunsc713 in reply toJoolsg

Is there a US organization/agency collecting information on patients experiencing augmentation from dopamine agonists?

Joolsg profile image
Joolsg in reply toBusunsc713

FDA.open.fda.gov/data/faers/#:~...

I live in UK and reported via YellowCardScheme AND the FDA. They accepted my report.

BPN28 profile image
BPN28

I’ll give it a go. Thanks very much.

UpAllNightBW2000 profile image
UpAllNightBW2000

Wait, why are the Neupro patches bad? I am taking tramadol with the 4mg patches and for the first time dont have symptoms. I have not augmented in years. Please tell me what to look for if they are harmful.

SueJohnson profile image
SueJohnson in reply toUpAllNightBW2000

I told you 2 months ago and I also told you that you are taking more than the maximum amount and by definition that is augmentation.

Joolsg profile image
Joolsg in reply toUpAllNightBW2000

Do you know what augmentation means? It doesn't mean increase in dose, it means increase in severity of RLS.Dr Berkowski has done a youtube video on Rotigitone and why it's the WORST dopamine agonist. It hides the increase in severity for a long time, but when it breaks through it is far more severe than when it breaks through on Ropinirole.

So read up on augmentation and watch the expert Dr Berkowski talking about Neupro.

youtu.be/Tz7g9sxS0_I?si=P6X...

Hoochybaby profile image
Hoochybaby

I should avoid returning to pramipexole I found having to come off this drug horrendous

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