An interesting development from the BBC.

[Dotmowatee]

I'm in the UK and recently there have been several articles in the press about the side effects of dopamine agonist, particularly compulsive behaviour. The BBC are planning to highlight people's experiences in a programme. I have been approached and I am under discussion with a journalist. I have to be careful as I have very good care from my current GP and am on an opiate. I was not warned about pramipexole and am still withdrawing. There is help out there but more awareness is needed. The journalist is particularly interested in hypersexuality and gambling. His name is Noel Titherage at the BBC.

[Kaarina Administrator]

Thank you so much for taking part in this, Dotmowatee. We are so grateful. There is a posting from Noel about this on our FB Restless Legs Syndrome: RLS UK page. facebook.com/RLSUK/

[Dotmowatee in reply to Kaarina]

I thought you would be aware of this, I have spoken to Noel, let's hope the programme goes ahead.

[Kaarina Administrator in reply to Dotmowatee]

We do too. 👍🏻🤞🤞🙏

[Madlegs1]

I would be uncomfortable about anyone who has an unhealthy interest in gambling and hypersexuality, dealing with side effects of DAs.

Has he worked through his cravings?. I'm sure the Beeb have a good Mental Health programme to care for their troubled employees?

Seriously --just remember how Channel 5 treated the subject, and avoid being made to look like a fool.

All the best.

[Joolsg in reply to Madlegs1]

Sadly Madlegs, unless we get media coverage, including BBC cover, the UK medics will keep refusing to teach RLS.Bothe the RCGPs and the ABN have effectively told RLS-UK to go away and stop pestering them.

So legal action and media exposure is the only way to shame UK doctors.

I agree the Channel 5 programme was dire.

But the recent Daily Mail and Mail on Sunday articles were more serious.

And the producer of Mr Bates v The Post Office is raising funding to get a docudrama made.

It may be our only chance to force doctors to stop prescribing DAs.

Also, most people who develop ICD have NEVER been interested in gambling etc before they started DAs.

The most common obsession/compulsion is food and overeating.

Fingers crossed the BBC behave professionally.

[Dotmowatee in reply to Joolsg]

I agree, more awareness is needed. My dentist needed to know what medication I was on and why. I gave her my story and she was horrified. As I said it's a minefield and a lottery as to whether your doctor and pharmacist are up to date on the condition and treatment. So many people are struggling.

[Madlegs1]

I've just got this article from the "Conversation".

It includes a video by the BBC, which is very good.

So maybe all will be fine.

theconversation.com/restles...

[Asha1918 in reply to Madlegs1]

I thought that was a great, well-written article without resorting to sensationalism. There has always been gender-bias in medicine. For example women can present with very different heart attack symptoms from men, yet doctors are traditionally educated about men's symptoms only. I wonder if yet again the predominately male medical profession is blinkered to RLS statistics which reveal that more women than men suffer from RLS. Not to mention the average GP's complete ignorance concerning RLS, let alone current medication guidelines. I had to give my GP a copy of the Mayo Clinic paper (I doubt that she's even read it) and find my own RLS specialist - which took years. I live in Sydney there seems to be a growing number of sleep specialists (ageing demographic?), who know a lot about sleep apnea etc, but sweet FA about RLS.

[ziggypiggy]

My mom received a settlement over 20 years ago here in the U.S. for a settlement against the makers of Mirapex for compulsive gambling. The issue has been around for a long time. It's just not reported on enough. Until a high profile figure or celebrity brings a spotlight to the severity of RLS and medication related issues it's going to be slow progress getting anywhere.

[Dotmowatee in reply to ziggypiggy]

It's only fairly recently that some doctors have stopped using the drug for first line treatment, it's shocking. I'm glad your mom received a settlement. Hoping that this programme will bring much more of a reaction from the public, even a so called celebrity !

[fishinphil1946]

I was on Pramipexole 2mg for about 15 years. I reduced by 0.125mg/2 weeks for 32 weeks. Swelling in my legs stopped. I have been on gabapentin 1500mg for the same period. I am reducing G 300mg / 2 weeks. I am trying to substitute Duloxetine 30mg twice per day. While D is an antidepressant, it has some benefit for peripheral neuropathy for my feet and ankles. I have RLS but feel like it is triggered by fatigue and the neuropathy. I also put on regular socks or full-length compression socks as a last resort.

Go slow on the P reduction and expect some time to clear it all after you reduce to 0mg. Everyone is different so keep trying.

[Dotmowatee in reply to fishinphil1946]

I am on an opiate which is making it easier.Am reducing very slowly. Can't imagine how I will be when I eventually get off them. Thanks for the advice. Hope things work out for you.

[SueJohnson in reply to fishinphil1946]

Duloxetine made my RLS go through the roof even while it was under control by gabapentin.

[SueJohnson in reply to fishinphil1946]

Why are you reducing the gabapentin? It is used for neuropathy. That is its primary use.

[Palamino]

Hi I have been contacted by Noel to I'm happy to talk ti them I was just concerned about being photographed or being on an actual video . U never know the comeback you may get . Mine was the sexulised behaviour . I'm in two minds what to do . I obviously want to help