Mail On Sunday article on RLS and Dopamine agonists

[Joolsg]

A useful article on the dangers of dopamine agonists. Hopefully some doctors will actually read it.

mol.im/a/13877837

[SueJohnson]

Great article!

[yorkie24]

A brilliant 'down to earth' article. It resonates so much with my experience of withdrawal from pramipexole and I too control my symptoms with codeine now. I could hear all RLS sufferers screaming when she stated that she was advised, by a GP, to restart the ropinerole! If we all know that is not the answer, why doesn't the medical profession??

[Joolsg in reply to yorkie24]

Because they aren't taught anything at medical school or during GP training about RLS or dopamine agonists.Even top neurologists in the UK still insist on patients switching to Rotigitone patch after they have augmented on Ropinirole or Pramipexole. It's negligent and scandalous.

[yorkie24]

I agree! Absolutely! 100%! I was given the rotigitone patch by a neurologist while suffering augmentation from pramipexole. And on it goes ........

[Joolsg in reply to yorkie24]

If they bothered to read the mechanism of augmentation ( over stimulation/up regulation of D1 dopamine receptors) they'd learn that another DA will simply mask the augmentation for weeks/months before breaking through again.It's the same with adding another med like gabapentin or an opioid. It just masks the augmentation which will always break through eventually. It might be weeks or years. But it will happen again.

[HipHop1972]

That’s a terrific article Joolsg let’s hope other papers take up the fight and Doctors actually read the article and start to think that maybe their patients suffering from RLS do actually know what they are talking about and take notice

HipHop1972

[SueJohnson]

And I couldn't help myself but had to reply to some of the people who made comments. I even recommended this forum so maybe we will get some new members.

[Joolsg in reply to SueJohnson]

It's so disheartening to read some comments though isn't it?

[SueJohnson in reply to Joolsg]

Sure is.

[Claire_lc in reply to Joolsg]

That's exactly what I thought. So many comments involve people who may have RLS but have certainly never taken DAs or experienced augmentation.

So all you see is a stream of people saying how magnesium is the cure. It dilutes the message and suggests the condition isn't really that bad.

[SueJohnson in reply to Claire_lc]

I thought the same thing.

[Oscarcat63]

Magnesium.Yes it probably helps some.

You'd think it was the 'cure all' from the comments.

Not surprising from Daily Mail readers.

The actual article was good though

[Laineypl]

What a great article. Thanks. It describes my husbands scenario exactly.

[Bowie4eva]

Thanks for this Jools, I’ve written down all the suggestions! You never know. It is dreadful that British doctors are taught sweet fa about this disease, or are taught completely wrongly.

I have learned more (correct) info from this site than from any medical professional. Thank you to everyone. X

[SaltyUK]

Great article! Unfortunately I can’t find a way to share the link on Social media.

[Rameau in reply to SaltyUK]

Daily Mail Online (@MailOnline) posted the article on X yesterday.

x.com/MailOnline/status/183...

[Stiggie]

I wish i could read this, but its a case of paying monthly to read anything from the Mail, and i cannot afford to do that

[Shad0w2 in reply to Stiggie]

I have just read the article and didn’t have to pay anything so it might be worth clicking on the link,

[Stiggie in reply to Shad0w2]

I did that

[Joolsg in reply to Stiggie]

Are you here in the UK?If not, look at RLS-UK Twitter/X account and try the link that way.

[Stiggie in reply to Joolsg]

Yes Joolsg im UK

[Joolsg in reply to Stiggie]

Then go to RLS-UK on Twitter and FB and you should be able to click on the link and watch in full.

[Stiggie in reply to Joolsg]

Thanks Joolsg, that worked, some of those comments tho !!! i was livid, dare not comment

[Joolsg in reply to Stiggie]

I know. The old soap under the sheet etc. And despite the film talking about the dangers of Dopamine agonists, some people are still recommending them!

[Stiggie in reply to Joolsg]

and Magnesium is a cure all, as if, never helped me one bit, my doctors where worse then useless when i went through augmentation, had to sort myself out best i could

[Oscarcat63 in reply to Joolsg]

Calm the farm, Joolsg and make sure you have a banana every day !Sorry, I had to have a laugh at that comment. X

[Joolsg in reply to Oscarcat63]

Stocking up on them!

[Oscarcat63 in reply to Stiggie]

I found it quite odd that the lady in the article finally found relief by using codeine (I think); yet no one commented on that. I am suspicious that anyone who did was derided as an 'addict' by the All Natural (we don't DO drugs !!!) brigade.😏

[Joolsg in reply to Oscarcat63]

Most people aren't actually aware that codeine is an opioid. I've seen many people in the UK express disbelief when they discover codeine is actually a low potency opioid. We can buy it over the counter in the UK with paracetamol, so people assume it's like ibuprofen or aspirin.If she'd mentioned oxycodone, there will have been uproar!

[Oscarcat63 in reply to Joolsg]

Yes.Up until 2017 - 2018 we could by the same paracetamol/ codeine mix over the counter here.

But, oh no - can't have that now.

So it's prescription only

No, I can't get any - because Opioids.

Never abused them in the 54 years I had been alive, when the law came into effect,

Smh.

[SueJohnson in reply to Stiggie]

I'm in the US and had no problem reading it and obviously not a subscriber.

[Shad0w2]

Thank you, this is an excellent article. I fail to understand why the medical profession do not work together with RLS-UK in order to update their advice and train Doctors accordingly.

[Joolsg in reply to Shad0w2]

The RCGPs rejected RLS-UK 2019 campaign to have RLS included on the curriculum.Then the president, Clare Gerada 'ghosted' RLS-UK and stopped acknowledging or replying to recorded delivery letters.

NICE have also refused to engage. And blocked discourse.

RLS-UK have tried to engage Parliament and are still working on this in the hope that Government can direct healthcare to learn the basics.

It's a worldwide problem.

In the USA, there are pockets of expertise, but huge areas where knowledge and treatment is poor.

In Germany, they still prescribe Levodopa!

I can only assume UK professional medical bodies feel threatened that patients know far more about treatment and latest evidence and research than most doctors.

Perhaps they don't want to admit such a huge failure in treatment and knowledge?

[Shad0w2 in reply to Joolsg]

Thank you Joolsg, I had no idea. Could these refusals to engage provide the basis for a follow up article by the Mail on Sunday ?

[Joolsg in reply to Shad0w2]

I believe the journalist is aware of the lack of engagement but wanted to concentrate on dopamine agonists and the very high rates of Augmentation and ICD.Parliament is the next step.

Same in USA. The rls.org people are trying to force education & change through advocacy at Capitol Hill.

[Shad0w2 in reply to Shad0w2]

Thank you

[Simkin]

Yes I too saw the article in the Mail on Sunday. The more press the better.

[LegJimmies]

After being on various dopamine agonists (DA) ending with Neupro patches, I developed a video gambling addiction trying to hide it from my spouse. It almost destroyed our marriage. After contacting my neurologist, I immediately had to stop all DA meds—a rather difficult 3 days. Now I am only on dopamines: low dose of methadone pills twice a day and pregabalin (Lyrica) twice a day. I still have bouts of RLS but at least I don’t run the risk of an addiction. I am 78, have had RLS for most of my adult life, and from my experiences, do not take any DA meds.

[Joolsg in reply to LegJimmies]

Do consider legal action. There have now been hundreds of successful cases against UK doctors for failing to warn and monitor for ICD. It is the best way to stop doctors prescribing them.And report ICD via UK YellowCardScheme.

[SueJohnson in reply to LegJimmies]

You don't need the pregabalin twice a day because one only has RLS at night. Doctors will prescribe it that way because it used to be only prescribed for neuropathy. You can combine the two doses and take them 1 to 2 hours before bedtime.

[Optidad]

I am presently in contact with a class action specialist who is carrying out a literature analysis . The underreporting of Impulse Control Disorder by both GPS and manufacturer provided accompanying drug information sheets has contributed to psycological , social and financial misery is astounding , myself included . I'm will be entering a treatment centre within the next 2 weeks , at 53 with no previous personal or family history of addiction .

[Joolsg in reply to Optidad]

It is VERY common and I really hope the scale of suffering comes to light.The producer of Mr Bates v The Post Office is currently researching this and wants to make a similar television docudrama.

The two UK firms that have successfully sued hundreds of UK doctors are Leigh Day and Switalskis.

I do hope you manage to get off dopamine agonists safely and that you are successful in your legal action.

The manufacturer can't be sued because they were aware of the problem decades ago and put express warnings in meds leaf from around 2009. But the medical profession are supposed to point out the very high risk. Failure to do so is negligence.

Reduce dopamine agonists very slowly. A printable schedule is set out in Useful Resources in RLS-UK website.

[Optidad]

Agreed on the withdrawal but that became evident almost a little too late. My dosage was doubled in June 2022 owing to what I now know as augmentation. By August 2022 I had developed a cocaine habit ( i would freely admit i would have used cocaine in social scenarios perhaps once every 2-3 years previoulsy in my life ) and an increasing obsession with pornography. I successfully hid this from my wife and family up to May 23. I had approached my GP the previous March where she diagnosed me with depression and exhaustion ( I was running my own business managing 2 retail outlets with 8 staff) and started me on Ecitalopram , continuing the Mirapexin as prescribed. My sleep deteriorated rapidly. By May 23 my wife became aware of my habit both narcotic and digital . My GP "assisted" by co prescribing Mirtazapine , an antipsycotic which drove my RLS wild . And such started a 6 month battle with addiction with my wife's support. I suffered a complete emotional breakdown in Dec 23 and was referred to local Psyciatry services who cycled through Quetiapine , Olanzapine and Promethazine , each of which was petrol to the RLS fire . Despite my objections neither my GP nor psyciatrist acted as if they were aware of the RLS aggravation as the antipsycotics were having a beneficial effect on my irrationality and racing mind . My marriage of 25 years broke down mid August 24 and I moved out of the house. Again my GP was aware of my new status and moved me from Ecitalopram to Sertraline with no reference to my mirapexin or RLS . For reasons unknown to me I stopped my mirapexin cold turkey 13t Sept 2024. On Monday 16th night I was admitted to A and E having overdosed on alcohol ( I hadn't drank in 18 years , by choice) , Sertraline and Ecitalopram . 2 weeks later , I am still off all SSRIS and mirapexin , under 24 hour shadow by my brother , and waiting on admission to a treatment centre. The bones of my complaint , being an intelligent , previously stable father of 3 and working professionally in primary care services , is the incidence of impulsive behaviour such as sexual changes , overspending etc is still listed on irish patient leaflets as less than 1 percent . This also was the figure verbally given to me by my GP and this behaviour was never queried at any appointment with the GP or psychiatric services during or preceeding my breakdown . I now glean from my recent research the incidence is somewhere between 18% and 40 % .

My withdrawal from Mirapexin is now over 2 weeks . I am taking a high quality Fe supplement ( Floradex) , about 90g of fresh broad beans daily , complete abstinence from caffeine and a cold shower prior to bedtime and have completed my third night of complete upper body symptom cessation and perhaps a 90 % reduction in leg symptoms , managing 8 hours sleep last night with 2 short wake periods . My thought processes have never been clearer , my cravings for cocaine have subsided ( for now ) and I'm praying my attending inpatient treatment will convince my wife of my commitment to recovery and reduce the possibility of a relapse.

Sorry for such a long reply but while my present situation has to be viewed in a multifactorial, multidisciplinary way , the timing of my behavioural changes , cocaine habit and increasing dosage of Mirapexin cannot be overlooked. I will contact the suggested solicitors in the UK and see if they can put me in contact with Irish counterparts as I both want to highlight this dangerous drug to , what appears to be , an oblivious medical fraternity , and attempt to recoup the considerable financial affect this has had upon me , my family and my business ( closing an outlet at the loss of jobs , income and paying redundancy not to mention 9 months absent from my post ) .I will keep the forum informed of my progress and an so happy I have finally found such a valuable resource. Thanks for reading

[Joolsg in reply to Optidad]

I am SO furious on your behalf. The medical ignorance and negligence is widespread.All SSRI and SNRI and tricyclical anti depressants send RLS through the roof.

The 1% figure for ICD is a complete nonsense. As you have discovered from your own research it's up to 38% AND is probably much, much higher due to underreporting by medics and patients.

English law firms will hopefully direct you to Irish law firms.

RLS-UK is trying to get RLS taught to the UK medical Profession without succesa. So far they have refused.

Legal action seems to be the ONLY solution.

See your private messages under chats.

I will forward your details to Natasha Bondy if you want to tell your story. There are thousands of similar stories.

Withdrawal symptoms can last weeks/months. Do print out the iron therapy help sheets and the withdrawal sheet to show to your doctors.

[amrob123 in reply to Optidad]

What a story, and what tribulation you have experienced. I'm sorry to hear this I hope you get things back on track and that you succeed in bringing greater awareness to the dangers of DAs. It sounds like you are managing to turn things around, so well done to you 👏