A case report of DAWS presenting as confusion, emotional liability and headache.
Most of us who have been through withdrawal from Ropinirole, Pramipexole and Neupro recognise these symptoms, but hopefully, this article and others will help doctors to understand the trauma of withdrawal.
Other common symptoms of withdrawal are listed, including anxiety, panic attacks, nausea and pain.
The article states that his symptoms improved after restarting Ropinirole and he was discharged with the possibility of a taper of Ropinirole. It doesn't say how he originally stopped the medication, but possibly he did not follow the slow withdrawal method we usually suggest.
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Joolsg
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but once again , a serious side effect affecting 19% of people !! In what world are these side effects including ICD and augmentation acceptable. And still they prescribe them willy nilly including first line in many instances !!!😡
I guarantee there will be double that figure affected! GPs don't link depression, anxiety, nausea, headaches with DAs and as they've never heard of augmentation, they certainly won't have heard of DAWS.
and yes , it might well be a mickey mouse paper but considering the relatively high incidence of DAWS adds to the crime of continuing prescribing DAs because of ICD and Augmentation.
I suspect DAWS is under researched and under reported! Like so many serious DA complications.I may speak to Switalskis and Leigh Day again to see if there's a possibility of legal action against UK doctors for refusal to learn about RLS, DAs, augmentation, ICD, trigger meds and the benefits of iron infusions for RLS.
the legal case should also be against the RCP, Royal College of Physicians for not having it properly in the curriculum to teach medical students, GPs or trainee neurologists… and also NICE for having incorrect management information for doctors . It’s therefore not surprising that docs know naff all about RLS, and if they do seek information, they then read about incorrect management….
January 2024 — minor update. Restless legs augmentation syndrome (earlier onset of symptoms in the evening/afternoon, increase in symptoms, and involvement of other extremities) added as very common adverse effect to pramipexole in line with the manufacturer's summary of product characteristics.
Thanks for that. Very interesting. I think the drug manufacturers are aware that there time making billions out of dopamine agonists is drawing to a close.They have avoided further legal action for ICD by putting warnings in med leaflets. But so many patients are now experiencing severe augmentation that they can no longer hide the elephant in the room.
Well having all the tests privately with Doctor Jose Thomas in Wales and him writing to my GP practice withe the recommended medication Methadone or Buprenorphine and another approved by NICE for use in treatment of RLS and with follow up letters my GO Practice have refused all treatment but I think you know this already. I then wrote a letter to each of the GP Partners again referring to the Mayo Clinic and background in withdrawal from Dopamine Agonists and what that was like. I also advised of my mental state, depression, frustration, severe sleep deprivation and the fact that at times I feel my life isn’t worth living, but I think of my family and my wonderful grandchildren whom I love more than I can say so will continue to fight my demons. I get very angry with some of my family, my wife is very supportive but for the life of me I can’t get her to read anything about RLS even though I print it and hand it over, head in sand syndrome!!. My 50 year old son asked how things were going, so I told him and I got very cross because he sided with the doctors and said I shouldn’t take Opiates as he didn’t want me to become addicted and that he had researched it and watched documentaries about addiction. He suffers mild RLS now and then and takes no medication, for an intelligent son who I know loves me I found his comments indefensible as he has witnessed my distress and pacing when they come and stay. These people who like to comment suggest treatment they have read about somewhere or other, subways or toilet walls, have not the first bloody idea of the daily fight RLS sufferers have especially when your forbidden the medication you need. Addiction, ha ha, I’m 78 for crying out loud would it really matter as long as I had a relatively good quality of life again.
Anyway I received a letter from a hospital Neurology department, presumably my GP has referred me no doubt to cover themselves, just in case. So this as a triage where my case will be reviewed by the hospital on 11 April and they will then decide what to do with me, appointment or putting down like a Rabid Dog. I have been a pain in the butt of one of the GP Partners so maybe that’s his plan 🤣🤣
No more suggestions thanks I just needed to get this off my chest, it’s quite a big chest ? I am currently reviewing GP Practices in my local authority catchment with a view to finding a practice that’s aware of RLS or would be more sensitive and understanding to their patients needs. Onwards and upwards comrades ✊🏼
It makes me so angry. As Kakally writes, the opioid bias is very real. Doctors seem to have this inbuilt refusal to read the research about opioids for RLS.
Opioids do NOT cause addiction for RLS patients ( unless there is a history of abuse). We do not "crave" a "hit" or need to take higher and higher doses. The Massachussets opioid register is proving this.
Doctors need to realise that the drugs that DO have serious problems are the dopamine agonists. And there are now tens of thousands experiencing drug induced worsening of RLS in the UK.
I'm so sorry that your family members choose to believe the UK GPs, even though any one of us would wipe the floor with GPs in an RLS quiz!
I just really, really hope that the hospital neurology department has at least one neurologist who will get off his backside and read the Mayo Clinic Algorithm, the American Sleep Academy draft guidelines, the Massachussets opioid study and the research articles on iron infusions and buprenorphine.
Bart's neurology dept and St George's neurology department in London no longer prescribe dopamine agonists, but there are still hundreds of UK neurologists who simply haven't got the knowledge to treat RLS effectively.
Leigh Day and Switalski's solicitors know more about RLS than any doctor I've met or spoken to over the last 10 years ( apart from Dr Jose Thomas) and, like me, are appalled that doctors don't seem to have to take part in "continuing education" to ensure that they are aware of the latest research and the best drug treatments for a very common disease.
That was a very good rant Joolsg, hope mine hasn’t affected your sleeping 💤. I read that doctors have been awarded a £20k pay rise, a junior doctor now earns over £100k a year and our PM welcomes it and says it’ll bring down waiting lists, what planet is he on. Apologies to those of you who think he’s wonderful 🙏
Just to reiterate, my GP and pharmacist are wonderful. Incredible that the rest of the practices in the country don't follow suit. Opiates have made a huge difference to me.
I am lucky enough to have a wonderful, young, female GP who reads the research papers I send to her and who is aware opioids do NOT cause tolerance or addiction in RLS patients, unless there's a history of abuse.But sadly, too many GP surgeries in the UK refuse to learn about RLS or read the research.
Others are constrained by the crazy NHS postcode lottery. North London cannot prescribe Buprenorphine, but South London can. It's heartbreaking for those with refractory RLS who have failed all other medications.
Methadone and Buprenorphine are highly effective for refractory RLS.
Hi I understood all the things you right here there should be some laws brought out to stop all this suffering with these medications especially the UK GPs l been going through all the different side effects since my early 30s now 65 and Still no answer to keep my legs under control and recently being weened off Premiprexol 0.18mcgs 2 early evening and 2 before bed because of the effects they were causing the tops of my arms to ache l couldn't believe it when my GP said we can up the dosage l was Gob smacked not a clue and of course she didn't want to listen to what l had to say l then proceeded to her what l wanted to do.
I come off Premiprexol and go back on tramdol this was a drug prescribed for me years ago and here l am thirty odd years later. Yes I've been on Amitriptyline premagablin gabapentine Deuolacitin
Help me!!! The nightmare as started again so down with existence 😞🥴l have had a doctor to my home while my legs have been in full flow she was wasn't exactly in the know but couldn't believe the frustration and pain in my face to try to stop the urge not too move my legs then on top of that the sweating and then cold because of the the side effect of coming off Premiprexol. And l told her l want to see a neurologist regarding having the Stellate Ganglion block. I have read up on this this procedure it will help sciatica Fibromyalgia pain and a slight chance for RLS l wold go private tomorrow if l had the funds wouldn't hesitate unfortunately on a waiting list so god knows how long l have to wait and wether l can have this procedure on the NHS. over the years I've also have herniated Discs and fibromyalgia Hypothyroidism l don't know if any of these are related to the drugs l have taken over the years but enough is enough l cant cope no sleep no LIFE!!!
That's terrible about your son. As he gets older and suffers more he may come around but by then you will probably be gone. I do hope you can find a new doctor who is more knowledgeable.
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