ICD (Gambling, impulse spending, overeating, hypersexuality) on Dopamine Agonists. BBC Article.

[Joolsg]

The BBC want to do a story on Impulse Control Disorder caused by Ropinirole, Pramipexole or the Neupro patch.They are particularly interested in speaking to anyone affected by Hypersexuality. The journalist assured me it will be done on a 'confidential' basis and your names will not be used.

Impulse Control Disorder can affect up to 38% of patients taking dopamine agonists. It can happen months or years after you start taking them.

RLS-UK's recent survey showed 11% of respondents taking DAs were displaying signs of ICD.

Many patients affected have successfully sued their Doctors in the UK for failing to warn about this very common complication.

If you have been affected by this, please contact me by Private message and I will pass on your details to the BBC investigative journalist.

The journalist is aware of the billion dollar class actions against Big Pharma in the USA and that Big Pharma put warning notices in leaflets from 2010 onwards. But he still thinks they need to take more responsibility and to advertise this common side effect more to doctors and patients.

The more media attention we can get- the more likely we are to get RLS included in the UK medical curriculum. That will lead to more knowledge and better treatment. And, hopefully, new UK NICE guidelines to reflect the Mayo Clinic Algorithm and the new American Academy of Sleep Medicine Guidance.

Please ask around, and if you are on FB groups- here or in the USA, please ask if anyone affected by Hypersexuality will speak to the BBC. Hypersexuality is the main ICD that people do NOT want to talk about because of the shame /stigma associated with it.

But the DRUGS are causing the patient to act out of character.

I know from speaking to contacts in the USA that there are people in prison for offences caused by Dopamine Agonist induced Hypersexuality. Marriages and relationships have broken down because of 'out of character' addictions to pornography or sudden infidelity/use of prostitutes.

We need to stop these medications being prescribed first line and we need RED FLAG warnings by doctors to all patients that have been taking them.

Please share this post.

[Madlegs1]

I'm not having my Jodie Foster fantasies spread all over the known world.?😃

[Joolsg in reply to Madlegs1]

If only it were that innocent! Some of the horror stories I have heard from USA are terrifying. People in prison for totally out of character behaviour.😔

[Madlegs1 in reply to Joolsg]

Horrible!🥵

[Dotmowatee]

I have issues with eating and shopping if they would be interested. Very angry that my GP prescribed the drug with no warning. Had to jump through hoops to get help.

[Joolsg in reply to Dotmowatee]

This time, the BBC want to concentrate on hypersexuality.However, you have 3 years from becoming aware DAs caused the ICD to bring legal action against your GP. Also, if you suffered augmentation - there is a lawyer who wants to bring a 'test' legal action. But again, it has to be 3 years from realising the drugs caused augmentation.

Let me know & I'll send her email.

[Dotmowatee in reply to Joolsg]

Difficult as my GP has now retired. I got an apology from her and am now with a much more receptive doctor. It's a lottery . I actually got Mark Buchfeuhrer to email her which helped.

[Joolsg in reply to Dotmowatee]

Well done you! 👏

[Merny5 in reply to Joolsg]

Does this attorney represent sufferers in US or the UK?

[Joolsg in reply to Merny5]

Only UK. The law is different here. We can sue doctors for negligence even though the medication leaflets contain warnings.

[sigurdur]

I bought a 500sqm bodega ruin in Spain to renovate while on pramipexole. I have yet to see if it was a curse or a blessing, but in the aftermath(prolonged depression) it has been more of a curse.

[Joolsg in reply to sigurdur]

I do hope it turns out to be a blessing. If you're in the UK you can take legal action within 3 years of realising DAs were responsible.