Interview with BBC Sounds

[Snoops112233]

Hi everyone, my interview was on live on Radio 5 this morning at about 8.47. If you Google BBC Sounds - The prescriptions drugs that gave me a gambling addiction, you will hear the recorded interview (I couldn’t share the link on here). We need as a group of sufferers and victims of this horrendous drug help to make some changes. There are also lots of other things in the pipeline to raise awareness of the danger of Dopamine Agonists. Sue

[Joolsg]

bbc.com/news/articles/cgkmr...

Hopefully the above link will work.

[DicCarlson in reply to Joolsg]

From the article: How scary is this!

"In a statement, GSK told the BBC Ropinirole had been prescribed for more than 17 million treatments and undergone "extensive clinical trials". It added the drug had proven to be effective and had a "well-characterised safety profile"."

[Joolsg in reply to DicCarlson]

Yep. Unbelievable.But if no one reports ICD or augmentation via Yellow Card Scheme- the serious side effects are not recognised.

[Joolsg]

Thank you so much for raising awareness of this very common serious side effect.

[Kickabout]

Well done for talking about it. I’ve just listened to it.

Unlike you I was warned about impulse control and was asked about it at each medication review. However when I started to experience what I now know is augmentation last year I was refused a gp appointment twice and made to speak with the pharmacist who works for my surgery. He didn’t listen to what I said and only focused on what he could change which was upping my prescription to the dose I’d already had to start taking. I lived with this for another five months until the widespread pain I’m suffering from some other as yet unknown condition made me try again to speak with a gp. He chose to focus on my restless legs and at first wanted to up my ropinirole until I requested a different medicine to try. If only I’d known!

I’m currently tapering off pramipexole and have had to go sick from work to try to deal with the withdrawal symptoms. The gp offered me no help other than an online talking therapy which has no spaces and I sleep app which is brought to their attention after ignoring me when I asked twice if a referral to a sleep specialist would be possible. I’m having unwanted suicidal thoughts and anxiety. I feel like the gp’s I’ve spoken to about this are just sticking their fingers in their ears and going “lalala can’t hear you”.

I was on antidepressants for 25 years and managed to come off them in 2020 so these thoughts aren’t new to me but I’d been free from them for 4 years. It’s so hard to try to sit and let the thoughts wash over you rather than acting on them or self harming. I’m exhausted and with different life circumstances I quite possibly wouldn’t be here now.

Something needs to change. I know I’ve been advised to sue, but I’m not strong enough and don’t have the funds.

[Snoops112233 in reply to Kickabout]

Wow - you saying that the GP’s are sticking their fingers in the ears, is something I have been saying for years. They just dish at the tablets to desperate people and then cross their fingers - it’s awful. It sounds like you are having a torrid time. Stupidly (but desperately) I went ‘cold Turkey’, coming off both Pramipexole and Ropinirole simultaneously, it’s horrendous. But please do your best to stick with it, I’m not going to swear but xxxxxx to the GP’s, sadly you have to do this by yourself. Look around you at all the things you love and appreciate and use them as your focus, it does sound a bit flippant to say that, but that is how I did it, my daughter previously had had an eating disorder, and I looked at her looking skinny and pale again, and my determination surged at the same time of a moment of clarity, and was done. Like you, I have been on anti-depressants for 12 years, I am still on them. I suspect if I hadn’t been on them at the same time as the DA’s things could have been a lot worse, so I completely understand what your saying about suicidal thoughts and of course anxiety, but grasp those moments of clarity and do something nice for yourself, and ever so gradually things to improve. I am also a CBT counsellor and happy to help anyone. A sleep app is a good idea once you are regulating your sleep, but not necessarily now. I would also like to suggest ‘mindfulness’, but again - when you are through this transition stage. I do wish you well, and know that I am here if you need it. Sue x

[Joolsg in reply to Kickabout]

I'm so sorry to hear this.Contact

[e-mail]

She wants to bring a test case.

It won't cost you anything as the firm will take their fee out of damages.

[Joolsg in reply to Kickabout]

Your GP should know that anti depressants cause/trigger RLS.The only safe ones are trazodone and wellbutrin.

See RLS-UK website.

[Kickabout]

Thank you. It’s definitely a bit of a dangerous situation with gp’s handing out medication with no official training on the condition. I get the feeling that mine are unwilling to engage because they’re wanting to cover their own backs in case any complaints are made. And I absolutely don’t blame them. The NICE guidelines need to be looked at and updated.

I’m getting through it, I’ve done it before and I can do it again!

[Joolsg in reply to Kickabout]

NICE guidance has sneakily been updated! See my post.They now state that dopamine agonists should NOT be prescribed because of the high risk of augmentation and Impulse Control Disorder.

[Kickabout in reply to Joolsg]

Really? Must have missed your post. I’m going to look at it now.

[Joolsg in reply to Kickabout]

healthunlocked.com/rlsuk/po...

[Joolsg]

This is such a brilliant interview Sue.Huge congratulations.

And I can't thank you enough for speaking out.

As you say- there will be thousands of other people affected by this who are unaware that dopamine agonists have caused it.

And I recognise a Wirral accent there! I'm from Bootle.

[Snoops112233]

Yep from the Wirral - guilty! Thank you for your kind words, it was a big thing for me to put myself out there, but I want to help all those people that are still suffering. Take care Sue x

[NonnieJ in reply to Snoops112233]

I have read a summary of the programme but I would love to hear it. I had unwanted side effects on Ropinerole, and had never heard of Augmentation(other than in the context of music terms!)

Coming to this group I had such wonderful advice and over a period of months gradually came off Ropinerole.

Please can someone tell me how I can listen to the recording.

Many thanks

Nonnie.x

[Annieapple]

adding my thanks & congratulations for a clear testimony… just brilliant… now to get the augmentation side of the story out there.. I have begun by filling out the yellow card scheme & making a statement to the NHS how their website advice ( still advocating DA’s) is different to the current Nice guidelines!! Joolsg

[Joolsg in reply to Annieapple]

Yep. Not surprised at all. NICE changed their guidance under the radar last week. I suspect because the BBC had been in contact with them in the last month.Smacks of 'covering their back...'.

NHS websites are harder to change as there's no immediate contact details.

Bit the complete contradiction now between NHS website with DAs as 1st line treatment & the newly changed NICE cks guidance (which carries no weight) is farcical.

[Annieapple in reply to Joolsg]

Exactly

[Tildabri]

Well done Sue: that was a great interview, which will no doubt reach a very wide audience and raise awareness of the terrible impact of these drugs. I'm very sorry that you had to undergo such a horrible experience.

[Daisy2408]

I posted yesterday about an interview at the top of the BBC South Today programme. It was a long informative piece including a g p saying RLS not mentioned in training. The item was regarding Ropinirole leading to gambling addiction. Is it just coincidence you were doing radio this morning? How interesting. The more exposure the better. Not sure where my post went!

[Joolsg in reply to Daisy2408]

This was all co ordinated by The BBC and RLS-UK were involved in the filming. The GP is Julian Spinks, chair of RLS-UK.

[Daisy2408]

I forgot to mention, the interviewee on South Today who lost £70,000 to a newly acquired gambling habit due to Ropinirole was able to retrieve this money from the g p who had not warned him of the possibility of this side effect.

[Gmc54]

Sue, you did really well. You put your feeling across clearly and succinctly. Well done you!

[LondonGir]

Thank you so much for raising awareness, the interview should be sent round to every GP surgery where Ropinirole is being prescribed, especially where GPs increase dosages due to patient symptoms increasing. I am on a 20 week journey off of Ropinirole with 5 more weeks to go :). When talking to GP about this horrendous withdrawal journey, the labelling 'Restless Legs Syndrome' sounds so trivial. However, I go armed with data from this forum and it's been a tremendous help. ***I am surviving the journey because of you all and the postings here ***

[Snoops112233]

Thank you everyone for your kind comments about the interview that was on the BBC yesterday. I won my case against the GP, the reason I won, is that I was put on two DA’s. LondonGir, you hang in there with coming off them, I went cold turkey which was just horrific, so you are sensible in the way you are doing it, so I do so hope it goes well for you. So stick in there everybody, we have strength in our numbers. Sue

[lamujer]

Just listened to your interview Sue, it was excellent. And although I know from personal experience how DAs affect people it was still shocking to hear how you and your family were affected. I agree with LondonGirl that your interview should be sent to GPs to help them understand the seriousness of the problem.