Hello Sue, Joolsg & all you lovely people,Today I rang my GP to ask if he would up my oxycodone from 5mg to 10mg.
I was all ready with the information you had all sent me from your own experiences as ammunition but he just said "yes"!
Obviously he talked through the pros & cons and I did say that my RLS friends had good results on 10mg but he said he was very happy for me to try the stronger dose & see how I get on.
As always thank you all for your help & encouragement.
Finding this site is the best thing that has happened to me.
Simkin
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that’s brilliant 🤩. Wish we all had Doctors like him. I’ve been told by prof Walker that I have to continue and increase the rotigotine patch. Therefore I have no choice but to fry my dopamine receptors 😞.
I found rotigotine patches brilliant for years. Then stopped working. Back on pramipexole. Then back on rotigotine .....Back then we did not know about receptors etc.
exactly. Thing is the consultants know this . But the dopamine meds are still used before opioids but seem to have side effects and then augmentation. I’m a nurse and like you guys have done so much reading around this subject. The US the seems to be way ahead of the UK in regards to mayo algorithm and where they prescribe the opioids in place of dopamine agonists because of augmentation. But now my RLS is so bad I can’t wait until November where I am sue to see him again for review so have no choice but to try then 😞
So sorry to hear this Lola. I am disappointed that Prof. Walker is still stuck with the outdated UK view that dopamine agonists are acceptable. As you say, they fry our dopamine receptors. Dr Andy Berkowski, who co wrote the Mayo Algorithm and sees thousands of patients with RLS, warns about these drugs.You could always decide to slowly reduce the patch and get off it with the help of cannabis & then ask for alternative meds when you next see him.
I just wish UK doctors would stop prescribing dopaminergic drugs when it's clear they ALL cause augmentation and permanent damage.
yes exactly 😞. Oh Joolsg I tried medical cannabis and ended up in hospital hallucinating - it was awful . Thought I could see a panther in the ED dept 😂. (I can laugh about it now but not at the time !) think the issue is all Doctors in the UK regardless of what they know have to follow the blasted NICE guidelines and many of the NICE guidelines are mostly outdated. It’s a sad situation. Hope your doing ok Joolsg 😊
I’m just wondering if I went to the US to see a consultant, (and I’m quite prepared to do so as so desperate ) if they would write a letter to Prof W and my GP with their recommendations- do you think that might help?
It's what Shumbah did. She flew to NY from Australia!I think you should write to Prof. Walker again and say you aren't happy on Dopamine Agonists and want to follow the Mayo algorithm.
Is your RLS completely controlled with zero symptoms and you can sleep 8 hours a night and sit comfortably through a film or a plane journey?
If not, then the dopaminergic drugs aren't effective any more and iron infusions, then pregabalin would be better.
I'm on 0.4mg Buprenorphine and now have ZERO RLS and sleep 8 or 9 hours every night. As Dr Buchfuhrer says, any doctor who cannot achieve resolution of RLS and 7 or 8 hour's sleep a night for their patients, is not a knowledgeable RLS doctor.
I’m so glad you are managing a proper nights sleep. It makes such a difference to daily life. I’ve been awake since 4am with RLS again even though I’ve worn that damn patch. They really make you feel sick too. I haven’t been able to eat . I’m going to email Dr Buchfuhrer. Thing is in the UK regardless all Doctors have to abide by NICE guidelines 😞. So they may not even listen to Dr Buchfuhrer. I’ve literally had it with this 💩.
I pushed Prof. Chaudhuri at Kungs London for Buprenorphine. He initially refused but I kept emailing him with research papers. Eventually he emailed back to say he'd have 'no objections as long as my GP agreed to prescribe'.Luckily my GP agreed to a 3 week trial and my UK health area doesn't have Buprenorphine on a red list.
You will need to be more pushy.The patch isn't working. Email Prof. Walker with your sleep and symptom diary. Sounds like augmentation has hit and you need to get off it. You can start that process without Prof. Walker. Let your GP know it's not working and augmentation has set in and you plan to reduce by 1/8 every 2 weeks. Your GP can prescribe 30mg codeine or 50mg tramadol to help.you with the withdrawal symptoms at each reduction. Cannabis really helps as well. It's legal in the UK now. Just sign up to any cannabis clinic. Sapphire and The Medical Cannabis Clinic are both easy to contact.
Professor Walker is still wedded to dopaminergic drugs, unfortunately, because he clearly doesn't see the thousands of patients suffering augmentation that Dr Buchfuhrer and Dr Berkowski see. If he realised the scale of suffering, he'd never prescribe these drugs again.
However, he has DEFINITELY prescribed Buprenorphine for several other UK patients and has agreed to arrange iron infusions for them. So he would not refuse Buprenorphine. But you need to be off the patch for any new drugs to be effective. Otherwise, the D1 receptors will remain over excited and drive that intense daytime and nighttime RLS.
The NICE guidance and NHS website need URGENT updating to reflect best treatment.
hello Lola43, I can’t believe that the foremost Neurologist on RLS in the country is still in the Dopamine Agonist mind set. I think it’s totally irresponsible and puts you back to the beginning again. I’m just thankful that I didn’t get to speak to him and pay the consultation fee. So far I’m going it alone and have so far managed to reduce from 6mg / day to 1.75mg of Ropinirole/ day augmenting with small doses of Codeine twice daily to tak the edge of until I can take my next dose of the dreaded drug Ropinirole. I have been referred to a neurologist as I got an emergency appointment with a GP as I said I was at the end of my tether and was seen within 2 hours of my call but not quite sure he fully understood what I was talking about apart from the fact he might have thought I could be teetering on being suicidal, I wasn’t but. Not in a good place. I thought I had a telephone consultation booked last week with a Neurologist but it was just a notification of the day and time my notes would be read, not heard anything further so heaven only knows what the outcome will be. We are like medical flotsam left adrift in a sea of non comprehension and what appears to be a reluctance to research the latest developments and treatments. So Lola43 if you can afford it and combine a USA consultation then I would definitely go for it. I’m afraid our once great medical service is terminally ill and no longer the envy of the world.
hi Hip hop , you are so right! The NHS is no longer the envy of the world like it used to be - it’s just terrible -at least you didn’t pay 370 pounds for a half hour appointment to be told to try’ a different dopamine agonist 😞. Goodness knows when your appointment will be. If there was more eduction re RLS in primary care and then being able to prescribe things for RLS like targinact we wouldn’t have to go to the extremes of seeing a neurologist. I do hope you’re ok. You have done so well tapering the ropinerole,. I can’t really afford to go to the US , but I’m seriously considering it. I was going to see a Doctor in New York that’s specialises in beuprenorphinue for RLS , but then I heard about prof W , so thought I’d try that first . Alas the only thing they would prescribe was dopaminergic drugs and opoids are last resort, but from what I’ve read- have less risks of augmentation and less side effects! I think we should all be on the NICE Panel to be honest . I won’t stop until I find a way to stop the RLS . I’ll go to the other side of the world if I have to. I have a child who needs his mum around . Big hugs to you hip hop
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