A salutary article in today's Mail on Sunday about addictions on Dopamine Agonists.Dr Guy Leschziner confirms it's common and that UK doctors must warn patients about this when prescribing Ropinirole, Pramipexole or Neupro.
We know they don't.
If you've experienced gambling, impulse spending, overeating, hypersexuality on DAs- you have 3 years from discovering DAs are the cause to bring legal action for negligence against your doctor.
youtube.com/watch?v=R6xbXOp...
I found this interesting research as well re. Dopamine and addiction.
Very interesting. And adding extra dopamine is just scary.
thank you Joolsg, about time it got a write up in a National newspaper. It’s a start but needs even greater coverage and I know RLS-UK is working tirelessly to achieve this
Regards HIpHop1972
We have to keep chipping away. Raising awareness through Newspapers, magazines and TV. And try to educate one GP, one neurologist at a time.It's just tragic that there are so few neurologists who are up to date.
Really. There's only Dr Jose Thomas who bothers to visit the USA to learn the latest research and treatment.
Meanwhile we have UK doctors telling patients withdrawal from Dopamine agonists doesn't cause any problems !! And refusing to prescribe opioids after DAs and gabapentinoids have failed.
We desperately need detailed, official NICE guidelines written by knowledgeable UK specialists. But we don't have any! Apart from Dr Thomas.
Hello Joolsg. Exactly on the button but I’m afraid it’s not working on my GP Practice, well I don’t think so. I made up file after file of documents relating to RLS and its treatment also the dangers of prescribing dopamine agonists. I would hand them out whenever I saw a new GP, you never see the same one. They all said that’s very interesting and they would mention at practice meetings, did they, I don’t know, but they certainly aren’t helping with my treatment. I have to contact Doctor Murphy’s secretary every 2 weeks to order my 3 weeks prescription of 3 number 10 microgram Buprenorphine Patches and then drive to Salford Royal Hospital on the last Friday of the final week to collect prescription and just pray they have sufficient in stock. The hospital isn’t that far away but depending on time of day and traffic on the motorway, no alternative, it’s taken over 3.5 hours round trip.
I shouldn't be surprised because I have had exactly this experience! Word for word. I am so sorry that you are going through this and our experiences are , no doubt, repeated worldwide. I spoke to my Dr. today and I had put the RLS information into our Surgery but they haven't bothered to read anything because he was still trying to get me to take Ropinirole. I won't! I told him they aggravate my 'massive ' hernia! He said that there is nothing that they can do for me now except to keep giving me Tapentadol quick release. No to Buprenorphine Sublingual tablets! I asked to see a Neurologist....there is a 2 year waiting list! My leg's and spine have been in agony and kicking since 6.30 p.m. but I now have to learn to cope with this without medical help....and I will! Thank goodness for this Forum and for Jools posting information for us and advice from others like Sue.All the best. Danni
Hello Joolsg. RLS are ok on Buprenorphine Patches but stress levels are through the roof as I have to notify Doctor Murphy’s secretary at the beginning of the week I place my last patch and then have to check with her to see if prescription has been signed and delivered to the hospital pharmacy for me to collect on the Friday, I have also to contact the pharmacy to ensure they have in stock so I don’t have a wasted 3 hour round journey. His secretary is great and a great help to me, she passed on my emails to him but I don’t receive any reply’s. He works in numerous hospitals and his secretary only sees him for 15 minutes on a Friday, if I don’t get a prescription then on the Friday night I have run out. It’s absolutely rediculous and am going to have to pay a regular fee to the Curaleaf Clinic to purchase the specific Canabis they prescribe for RLS and for the follow up monitoring by their medical team on a very regular period.
Can’t really afford this but it’s my only option as Doctors won’t prescribe and hospital unreliable. I’ll let you know how it goes
HipHop1972🤞
This is just SO unacceptable. All because your GP surgery is so backward.I'm so sorry to hear this.
Can Chris Murphy issue double the prescription so you effectively have a 3 month supply ready at all times?
If you explain the distress it causes he may be more amenable.
Hi Joolsg, I have requested that, when he first started prescribing it ways for 3 months, the hospital pharmacy has been taken over and my last prescription was for 3 weeks which means I can’t leave home for more than 2 weeks at a time. He seems to be hog tied as pharmacy won’t accept new prescription before the due date ie. When previous one has reached its end date. I will send you a copy of the letter I received from my GP in response to Doctor Murphy’s letter to them but I’ll have to cover my address before I send.
Going to the gym now for some gentle exercise to calm the savage beast.
Regards HipHoo1972
Hello Joolsg this is the reply we received from our surgery after Doctor Murphy had written to them again and my wife had written explaining what it was doing to our lives and the effect it was having on hers, never before did she suffer from high blood pressure and stomach issues that are now medicated. Banging heads against a brick wall I’m afraid 😧
I’m signing onto Curaleaf Clinic again as I won’t have the stress of chasing prescriptions if Doctor Murphy is prevented from issuing a 3 month supply of patches as he did originally. I think something has drastically changed at the hospital relating to the prescribing of opioids as he has to request a prescription for him to sign and pass on to the outpatient pharmacy. It’s all gone bloody mad and sod the patient. So much for care at source, let’s all cover our backside.
Regards and thanks for support as always HipHop 1972
Hi Hiphop, the end of the 4th alinea is a bit puzzling. They say they MAY be able to take over from the specialist once your condition is stabilised. But is IS stabilised, isn’t it? It also seems contradictory to what they write before, that they cannot prescribe due to regulations. Puzzling….
Maybe they mean with ‘stabilised’ as ‘no longer needing an opioid for treatment’. Sigh. That won’t happen.
Hard to say whether arguing further with them will help. I do hope you find a solution and continue to get the patches.
Hello dear LitteM. Thank you for your reply and support, you are correct it is confusing and contradictory. I think it’s excuses as they do tend to change. I have been fighting them for over a year now with letters from Doctor Thomas in Cardiff ( but he can’t prescribe as I don’t live in Wales) and my own GP who doesn’t understand and won’t take the time to be educated on RLS. He brought in the National Triage system which now makes it doubly difficult to actually see a doctor face to face. He loved the accolades heaped upon him and the black tie presentation that was screened for months after in the waiting room along with the other partner who has MBE or OBE and was interviewed on breakfasts TV about 9 months ago. Loves the lime light. Could have more if they became a centre of excellence for treatment of RLS.
Kind regards HipHop1972
Their letter says they will reconsider and take over prescribing when your condition has 'stabilised'.Your condition was stabilised by the patches - UNTIL you had difficulty getting the actual prescription from.Chris Murphy.
Surely now is the time for them to take over???
I would write back and say that the stress of getting the prescription on time from Chris Murphy is triggering illness in your wife and stress worsens RLS.
You can tell them that many patients are now doing very well on Buprenorphine and that they need to now put the patients' health first.
A neurologist did prescribe and monitor. A neurologist has asked them to prescribe.
They will NOT be prosecuted by BMA/GMC etc as they have stuck rigidly to all guidelines.
So now- to 'stabilise' your disease and stop the constant worry and loss of continuity- they should take over prescription..
Hello Joolsg, exactly and have done just as you have suggested but still won’t shift their stance. Originally started off by saying that there was no evidence that Buprenorphine works. I am that evidence. being pig headed. Looked into changing surgeries but no one will take new patients even out of area. Think I may have over egged the work I did trying to educate the practice about RLS and its treatment, with the files I put together on the subject.
HipHop1972
This is just so distressing.
I thought so. Sorry to hear that, HipHop.
Now what? Will dr Murphy continue to help? At what cost to you?
Back on the Pramipexole
Ropinirole, Pramipexole and etc
From Ropinirole to Pramipexole 
Anxiety brought on by ropinirole withdrawal?
Pramipexole and compulsive disorder
