I am struggling baldly with my RLS. I’m over two years off ropinirole and currently taking garbapentin. I have had RLS for over 25 years. It is now diagnosed as “severe”.
It does not help my sleep.
Is there an uk specialist I could seek a referral to in the hope they can assist with my chronic RLS.
Thank you for your help/advice.
John
Hi John,As gabapentin isn't working- you now need Buprenorphine.
There are very few knowledgeable specialists in the UK.
Where are you?
It's often better to see a neurologist in your 'formulary' NHS area so the GP will prescribe Buprenorphine on the specialist's recommendation.
John, did you file a report about Ropinirole causing RLS to worsen? If not- do so now. We need to alert the medical profession to the extent of serious side effects on Ropinirole and other dopamine agonists.bnf.nice.org.uk/medicines-g...
Hi John: there are few UK doctors or neurologists who are up-to-date with current RLS research and best practice. I note that Joolsg and SueJohnson gave you three possible names between them - who might prescribe a low dose opioid - in their replies to your last post. There are a few others, but where are you in the UK?
There were also questions in their replies about your serum ferritin (and transferrin saturation) levels - the actual numbers, rather than a doctor's comment that they were 'above minimum' or similar. Did you get a fasting full panel iron test, and have you read this paper on iron therapy?
rls-uk.org/_files/ugd/b0a19...
I haven't been through your previous posts and replies thoroughly, so has your attention already been drawn to this list of other Medications To Avoid?:
I used to take statins, sedating antihistamines etc - and now that I do not (and as I was lucky enough never to have taken a dopamine agonist) with a few small changes to diet I find myself symptom free.
As you augmented on ropinirole and gabapentin has not been totally effective you will probably need that low dose opioid, but raising iron and avoiding triggering medications can only help.
Thanks Chris, remembering what I know at circa 3.00am and close to desperation is clearly not one of my strengths.
Yes I know my serum ferritin and transferring saturation actual numbers but didn't want to share personal health information on a public forum. I had also read the iron therapy paper before thanks.
I'm in Glasgow.
I'll review my statins status as I had thought of that before. Thanks.
The slow move to opioids now seems all to inevitable unfortunately.
Best wishes,
John
Just to give you some hope John- I was in your position 5 years ago. I came off Ropinirole in 2016. I was then taking pregabalin AND Oxycontin until 2021. My RLS was very severe. 38/40. I dreaded night time. No point going on as my sleep was disturbed ( which I can handle) but the horrendous RLS was driving me crazy.I begged Prof. Chaudhuri for help. He refused an iron infusion and said there was nothing else available. Nothing he could do.
However, I knew from Dr Buchfuhrer, a top RLS expert, that there are solutions if you find the right doctor willing to prescribe the right medication.
Shumbah posted on here over 6 years ago that her Severe RLS had disappeared when she was prescribed Buprenorphine.
I asked my GP for a trial. I showed her the research papers and the Mayo Clinic Algorithm.
She agreed to a 3 week trial.
Overnight my RLS went from 38/40 to 0/40..
4 years later and I still have zero RLS and sleep every night without RLS.
It is utter bliss.
Side effects can be resolved.
So you need to see a UK specialist who will recommend Buprenorphine to your GP.
But first, check your local formulary.
Buprenorphine is 'red listed' in many prescribing areas and GPs are not allowed to prescribe it. You then need to collect a monthly green form prescription from the specialist or set up a 'shared care' arrangement with the specialist and GP.
It's the usual NHS Postcode lottery.
Thanks again Joolsg, your detailed and helpful message does indeed give hope as I am getting beyond desperate. The last 7 years have been horrendous and I should have acted before now (2 to 3 hours sleep a night on a good night!).
Stupidly I kept thinking it would get better/stop being so bad. That logic doesn't work with a progressive ailment!
As I said the Consultant is happy to prescribe Buprenorphine but I have been a bit reluctant to go down that step. More out of fear that if it doesn't work I would have no/little other options.
I see the Consultant next month and will raise this with him then - thanks again,
John
John- I had severe RLS in 2000. Very severe in 2007 so was started on Ropinirole. Then augmentation turbo charged my RLS. It was 24/7 .Now I have zero RLS on 0 4mg Buprenorphine.
So much for progression!
The right meds from the right doctor should settle your symptoms.
You will soon be sleeping 7 hours a night!
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