Methadone for refractory RLS - Restless Legs Syn...

Restless Legs Syndrome

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Methadone for refractory RLS

Joolsg profile image
19 Replies

academic.oup.com/sleep/arti...

An interesting case of a female patient whose RLS was controlled with methadone.

Clearly the patient is experiencing augmentation and I'm, yet again, shocked that the people treating her don't recognise the signs of augmentation!

Unfortunately, they have left her on Ropinirole, so I suspect the hyper effect of augmentation on her RLS may break through. It's a shame they didn't use the methadone to get her completely off Ropinirole.

I would write to the authors at Shreveport university Louisiana if they had left a contact email.

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Joolsg profile image
Joolsg
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ChrisColumbus profile image
ChrisColumbus

Authors are Fellows in Sleep Medicine at LSU Health Shreveport under Program Director Prof Oleg Chernyshev (one of the listed authors). His contact details:lsuhs.edu/departments/schoo...

Joolsg profile image
Joolsg in reply toChrisColumbus

Excellent. I googled Brittany Monceaux & she's a psychologist. I've sent her an email.It just seems counter productive to start the poor woman on methadone, but leave her on Ropinirole! It WILL break through the methadone at some point and is still causing damage in the meantime.

ChrisColumbus profile image
ChrisColumbus in reply toJoolsg

Yes, she's on that Faculty contact list as well. Agree entirely that they need to know about augmentation on ropinirole. Louisiana generally still seems to be a bit behind on best RLS practice: the Louisiana Heart and Vascular Institute still recommends dopamine agonists (as well as gabapentin/pregabalin).

Joolsg profile image
Joolsg in reply toChrisColumbus

academic.oup.com/sleep/arti...

Bloomin heck. Another case where they have given someone methadone for refractory RLS BUT kept him on the Rotigitone patch. They then go off on a wild goose chase, blaming androgen receptor inhibitor therapy for hid breakthrough RLS completely failing to realise that adding the Rotigitone patch and then Pramipexole to a patient suffering augmentation is just going to make matters worse.

We really are going to be fighting an uphill battle.

The lack of knowledge is widespread!

ChrisColumbus profile image
ChrisColumbus in reply toJoolsg

And the authors are at the Mayo Clinic Rochester, which is an RLS Foundation QCC!!

Joolsg profile image
Joolsg in reply toChrisColumbus

It's mind blowing. 😌

LotteM profile image
LotteM

Just sent you a personal note, Jools. I think I found the email address of the forst author

Joolsg profile image
Joolsg in reply toLotteM

😊

HipHop1972 profile image
HipHop1972

That’s absolutely shocking, thought they were more enlightened over the pond, but apparently not universally.

I received a notification from a hospital neurology department saying I had an appointment on the 11 April, but not to attend as this was a triage appointment where the hospital would review my case on that date. I made a face to face appointment with one of the 3 GP Partners it only took 10 days but I saw her today as I wanted to know what was going on as I’ve not received any replies to the letters I’ve written since I received a call from the GP I was seeing to say that they were unable to prescribe Opiates but with no further information although I think it was my GP who has referred me to the hospital and not the partner I saw today. Aparantly all 3 partners with the other 8 GPs in the practice met to review my case and the issue of prescribing Opiates and apart from prescribing to people with drug addiction it was outside their remit and it’s so well scrutinised and regulated that they could lose their jobs. The partner I saw today couldn’t understand why Dr Thomas couldn’t give me a private prescription and I explained that h would need a special license to do that and he had spoken to a colleague who has such a license only to be told it only covered him to prescribe to patients with drug addiction. So if the neurologist at the hospital is willing to prescribe Opiates then after the first prescription has been dispensed then my surgery would be able to carry it on. What is confusing me is that several people on this forum have been prescribed Opiates by their GPs so what have they got that my GPs don’t have, or have they initially been prescribed by a specialist and then their GP has taken it on. I explained everything RLS-UK (Joolsg) has been trying to do but the Partner I saw today , who incidentally has been on TV said training for RLS is all well and good but it would need the government to effect a change in policy.

I asked if the hospital neurology department has all the paperwork relating to my case as I’ve heard nothin from them since the Hospital review on the 11 April. She said she would write to them and make sure they had the paperwork.

They should be flaming experts on RLS with all the files Ive made up and handed over to various GPs but I guess if legislation it blocking them from progressing it then I’m now just a pain in the Arse. Anyway that’s all from me now until I hear from the hospital so it’s a bit like the cartoon Road Runner and the Coyote but not so funny

Jumpey profile image
Jumpey in reply toHipHop1972

I have had opiates from my gp s for years without problems.

HipHop1972 profile image
HipHop1972 in reply toJumpey

Good morning Jumpey. You are most fortunate with your GP and maybe he / she has other qualifications, I don’t know 🥲

Jumpey profile image
Jumpey in reply toHipHop1972

I am indeed fortunate.

Joolsg profile image
Joolsg in reply toJumpey

Me too, but I suspect HipHops surgery have their own 'in-house' rules. They seem to be completely anti opioid, even though Targinact is licensed in the UK for RLS.Many surgeries are constrained by local rules which differ throughout the UK.

I can get Buprenorphine from my GP in South London, but in parts of North London, it's red listed and only available from a neurologist or sleep specialist.

It is a national disgrace.

Joolsg profile image
Joolsg in reply toHipHop1972

I absolutely do not understand this at all.Targinact is an opioid and is licensed for RLS in the UK, meaning any GP can prescribe it.

In South London, GPs can issue Oxycontin and tramadol for RLS. They don't need any government permission.

My GP agreed to prescribe Buprenorphine to me on a 3 week trial. The neurologist at King's didn't issue the prescription.

My GP does.

However, in North London, they cannot prescribe Buprenorphine.

The whole system is a confusing, unfair mess.

I suspect your GP surgery has made its own rules about prescribing opioids in general.

By law, you can move to another GP surgery in another area, if they agree to take you. So you could try calling/writing to other GP surgeries within an hour's drive to explain your predicament. A sleep doctor in Wales has recommended you try Buprenorphine, but your GP surgery refuses to prescribe.

There are at least 5 people in other parts of the UK receiving Buprenorphine pills from their GPs.

I can only hope that the hospital doctors are more humane and have bothered to do their research.

It is absolutely disgraceful. You are not an addict. Low dose opioids are highly effective and do NOT cause addiction(unless there's a history of abuse) or tolerance.

They are more than happy to overprescribe dopamine agonists and cause nationwide addiction. Just look how many people are increasing their dose of Ropinirole/Pramipexole and unable to get off them without horrendous withdrawal!

Aaaaaaaghhh!

Jumpey profile image
Jumpey in reply toJoolsg

I agree with everything you say.

Elisse3 profile image
Elisse3 in reply toHipHop1972

I can have codeine ,dihydrocodeine but not Targinact even though it’s licensed to use for RLS. I have to see a neurologist to get him to allow it so my surgery can prescribe it. Will take weeks before i get an appointment in the mean time i am left with taking one pramipexole and low dose codeine to get through. It’s absolutely madness.

DicCarlson profile image
DicCarlson

Amazing, but it's the way medicine works apparently - current treatments, even when failing continue. And doctors when presented with contrary information and studies will want none of it. My docs response when I refused Requip "I don't need to be schooled by you!"

Joolsg profile image
Joolsg in reply toDicCarlson

Yep. I had the same. 'I hope you haven't been using Dr Google'. This was the doctor who watched me sob after 4 nights without sleep, refused to prescribe Oxycontin and suggested I drink a glass of milk'.I don't know any other profession that would be allowed to get away with such a gap in training or knowledge.

Dotmowatee profile image
Dotmowatee

I saw a consultant privately who wrote to my doctor and informed her that I needed an opiate to help me withdraw from pramipexole, which I should never have started. Targinact was duly prescribed and is very effective. My pharmacist is great, it's incredible that there is so much ignorance about the condition. Targinact is licensed for rls.

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