Prescribing of opiods: Having spent... - Restless Legs Syn...

Restless Legs Syndrome

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Prescribing of opiods

Believer1234 profile image
60 Replies

Having spent time working with Dr Jose Thomas in Cardiff, I obtained a referral letter to my gp surgery recommending low dose opioids. I had a very good consultation with my gp who appeared to understand the desperation I was experiencing and said that she was going to look at a range of options including a referral to a sleep clinic and prescribing of the opioids. She said to give her the weekend to research it. I then heard nothing for 3-4 weeks. Having chased it up, it appears that she has referred me to the Royal London Hospital for Integrated Medicine which seems to be for complementary therapies and managed by local pharmacies. She said that the practice are not able to prescribe opioids due to the risks of tolerance and addiction (obviously I can refute this but it's unlikely that they will change their position).

Does anyone have any advice on ways that I could appeal or know any gp surgery in the Essex region (UK) who is prepared to prescribe them?

My gp practice employes the practice where you have make an appointment/treatment request on line in the morning (which very quickly expires as they receive the maximum requests for that day). They then respond to you by text and there is no way of replying to the text. You have to wait until you can get through on their system to give the information/response in another on-line appointment/treatment request so it is not easy to communicate with them.

Thank you :)

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Believer1234
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60 Replies
SueJohnson profile image
SueJohnson

Dr. David O'Regan is a Consultant in Psychiatry and Sleep Medicine at the Insomnia Clinic at the Royal London Hospital for Integrated Medicine. Claire_1c saw him privately for £300 and he prescribed Targinact.

Believer1234 profile image
Believer1234 in reply toSueJohnson

Thanks Sue - so maybe I should give the Royal London Hospital for Integrated Medicine a chance then as I am being referred on the NHS?

Believer1234 profile image
Believer1234 in reply toSueJohnson

Do you have a link to Claire_1c's post please as I can't seem to find it on the search engine ? Thank you :)

SueJohnson profile image
SueJohnson in reply toBeliever1234

You can chat with her and ask about her experience.

Believer1234 profile image
Believer1234 in reply toSueJohnson

Thanks Sue - I have chatted to Claire who said that they consultant she saw gave her Targinet as a last resort and was trying to push her down the CBT route so I'm thinking that this probably will be a waste of time :)

SueJohnson profile image
SueJohnson in reply toBeliever1234

Darn. I'm sorry that didn't work out! Another one I have is Dr. Mike Davies at Royal Papworth sleep clinic, Cambridge - will prescribe opioids including buprenorphine- recommended by DickJones.

Believer1234 profile image
Believer1234 in reply toSueJohnson

Thanks Sue, I've got the referral from the specialist. I just need to find a GP practice who will take me on who will prescribe opioids 😊

SueJohnson profile image
SueJohnson in reply toBeliever1234

I'm not in the UK but this is my understanding from Joolsg's posts.

Find nearest prescribing area where it isn't redlisted and find a surgery that prescribes opioids and ask to register at a GP. NHS rules allow you to register with any surgery as long as they don't have their own restrictions on who can join and they agree to take you.

Or get neurologist to issue a prescription on a green form & fill it at local chemist if GP won't prescribe it

Believer1234 profile image
Believer1234 in reply toSueJohnson

OK thanks Sue. London would be too far for me as I would also need the GP practice for routine appointments :)

SueJohnson profile image
SueJohnson in reply toBeliever1234

The nearest prescribing area might be closer than London.

Tarsprayer profile image
Tarsprayer in reply toBeliever1234

I had a similar experience with the GP unable to prescribe what a consultant has recommended. One answer is to get Jose Thomas (I know him) to make the prescription for you. Email him or write to his secretary.

Believer1234 profile image
Believer1234 in reply toTarsprayer

Thank you Tarsprayer. I don't think that he would be able to do it as I'm not in his area. He may be able to give me a private prescription but that doesn't help for long term

Joolsg profile image
Joolsg

I feel your rage and frustration.I am so sick of the lack of knowledge and education amongst UK doctors.

Here's the Massachussetts Opioid study that confirms RLS patients do NOT experience addiction ( unless history of abuse!) or tolerance on low dose opioids. That is a completely different result to where patients take opioids for pain relief.

I also attach study on Buprenorphine by Dr Andy Berkowski, the co writer of the Mayo Clinic Algorithm and the new American Academy of Sleep guidance.

I can only suggest the old fashioned method of printing out the articles and writing a long letter and hand delivering to GP reception.

The Royal London won't have anyone with detailed knowledge of RLS.

Dr Jose Thomas is the ONLY doctor in the entire UK who I regard as knowledgeable on RLS. The majority of neurologists are still wedded to dangerous Dopamine Agonists.

Aaaagh! We scream into the void.

massgeneral.org/rls-registry

accounts.haymarketmedia.com...?

gn=101&retUrl=https%3A%2F%2Fneurologyadvisor.com%2Frepo...

Believer1234 profile image
Believer1234 in reply toJoolsg

Thanks Joolsg - I may try this. I just feel like I'm going round in circles but I know a lot of us feel that way!!!

Believer1234 profile image
Believer1234 in reply toJoolsg

Hi Joolsg - could you please resend the second link as it doesn't seem to be working? 🙂

Joolsg profile image
Joolsg in reply toBeliever1234

neurologyadvisor.com/report...

Sorry, I hadn't reloaded my webpages before clicking the link.

There are also many, many anecdotal positive accounts on here.

I'm happy to recount my success to any GP/neurologist.

Believer1234 profile image
Believer1234 in reply toJoolsg

Thank you so much 😊

Believer1234 profile image
Believer1234 in reply toJoolsg

Good Morning Joolsg. Thank you for giving me the links. However I'm just wondering if the Massachussetts Opioid study is the correct link as it doesn't actually say on the study that patients do not experience tolerance (i.e. augmentation) as it doesn't look as if the study went that far in terms of timeline? Thank you 🙂

Joolsg profile image
Joolsg in reply toBeliever1234

If you look at the year by year reports, patients have stayed on the same low dose. Most had a small upwards adjustment in Year 1, but after that they have stayed on the same dose. That proves that tolerance hasn't happened.The study does say that an increase/tolerance is more likely to happen when patients experience PAIN with their RLS.

The study has been going for 6 years now.

There are a few of us on here who are in the study.

I have been taking 0.4mg of Buprenorphine for 3.5 years. No increase in dose. No tolerance.

Believer1234 profile image
Believer1234 in reply toJoolsg

Ah - that's great - thanks Joolsg - I'm getting all the ammunition together!!

Busunsc713 profile image
Busunsc713 in reply toJoolsg

I need some advice. To make a long story short, a friend went through augmentation on dopamine agonists, tapered off and Gabapentin was prescribed 600mg at 4 hrs and 2 hours before bedtime (total dose 1200mg). Additionally, hydrocodone was prescribed to relieve severe RLS and PLMD. Hydrocodone 10 mg ER was first prescribed but it didn’t work (not sure if the dose was high enough). Immediate release hydrocodone was then prescribed 10mg at bed time and one tablet 4hrs later if necessary. It worked beautifully for awhile. At first the hydrocodone produced somnolence which allowed my friend to sleep through some minor periodic limb movements. Now he stays awake, the periodic limb movements are more pronounced and he feels pain in his arms and legs. I’m accompanying him on his physician visits because of the lack of sleep, etc ….. he’s not thinking clearly. I’m wondered if he needs to get off the hydrocodone, switch to methadone or Buprenorphine and add something to help him get some sleep? Is Lunesta appropriate for RLS patients?

Typicallygaslit profile image
Typicallygaslit

I was referred to the hospital for Integrated Medicine in 2013, it was tough enough getting there as I’m in Wales, and I was left very frustrated as Hugh Selsick pushed the CBT agenda from multiple sides. He did not even suggest RLS at the time although there was a mention in his letter that it should be investigated. I was supposed to have a polysomnography but could not due to logistics. It would have been under prof Matthew Walker who of course without doubt would have suggested DAs.

Believer1234 profile image
Believer1234 in reply toTypicallygaslit

Thank you Typicallygaslit. Were you referred with RLS and were you referred to the Sleep Medicine Dept?

Typicallygaslit profile image
Typicallygaslit in reply toBeliever1234

I was referred for insomnia and met with Hugh Selsick who dealt with it, but it all seemed very routine and as someone with co-morbid insomnia, I didn’t feel heard. I had rather high expectations that someone would finally understand my problems. Perhaps something would have come out of it eventually but like I said, I couldn’t go there more than that one time.

Biscuitface profile image
Biscuitface in reply toTypicallygaslit

Not necessarily. I see Professor Walker annually. He wrote to my gp with advice to prescribe Buprenorphine in 2021. He has also organised Sleep Study and Iron transfusion.

Typicallygaslit profile image
Typicallygaslit in reply toBiscuitface

Ah ok, I was only going by what I’ve heard on here, good to know he’s open minded.

SueJohnson profile image
SueJohnson in reply toTypicallygaslit

My understanding is that he used to prescribe buprenorphine but no longer does because of the possible teeth problem, although that can be prevented.

Typicallygaslit profile image
Typicallygaslit in reply toSueJohnson

Ok, I’m not convinced the teeth problem is big one if you only take a low dose once a day.

SueJohnson profile image
SueJohnson in reply toTypicallygaslit

I agree. I was just saying what he believes.

Typicallygaslit profile image
Typicallygaslit in reply toSueJohnson

Yes, of course. He seems rather uptight to me if that’s his worry.

Believer1234 profile image
Believer1234 in reply toBiscuitface

I saw him and whilst he was understanding, his first line of treatment was gabapentin/pregabalin, second DA's up to 4mg and then opioids. I had to chase his referral letter for weeks and finally got a copy but it was never sent to my GP surgery. I was in the end happy about this as knowing my GP's, they would have jumped on the DA's!!! :)

joepublic profile image
joepublic

I am in Essex & my GP issues me with Oxycodone on the authority of Kings College Hospital in London. The replacement of Ropinirole with this drug has been a game changer apart from constipation nightmares.

SueJohnson profile image
SueJohnson in reply tojoepublic

Could you tell me the name of the doctor at Kings College Hospital who told your GP to prescribe oxycodone and also the name of your GP that was willing to do so as so many doctors won't as I keep a list of those doctors in case someone else asks.

Believer1234 profile image
Believer1234 in reply toSueJohnson

I don't suppose you have details of any GP's in Essex that will prescribe, do you Sue???

😊😊

Joolsg profile image
Joolsg in reply toSueJohnson

Prof Chaudhuri runs King's college clinic Sue!! You rememember? The top expert who wanted to inject apomorphine into patients experiencing augmentation.He will prescribe opioids BUT refuses iron infusions, disputing the evidence they help and I had to push and push for Buprenorphine.

SueJohnson profile image
SueJohnson in reply toJoolsg

Ahh. I just assumed it was another doctor there.

Joolsg profile image
Joolsg in reply toSueJohnson

King's College Hospital runs the only RLS clinic in the UK and the doctors all report to Chaudhuri, who is a PD expert. Probably why he's anti iron infusions and still pro dopaminergic drugs. I just hope he sees the light & starts to speak out against Dopamine Agonists.

ACRELANE profile image
ACRELANE

I have had this horrible affliction for 55 years and only recently have I found a collection of drugs that actually work for me. It includes a mixture of pramepexole and an opioid Targinact. I touch wood every day because the relief has been life changing. I wake every morning hoping that it still works and so far fingers crossed. I take nothing for granted because I have had relief in short spells in the past but to get some relief is amazing. Keep going with the opioid direction and hopefully it will work for you.

SueJohnson profile image
SueJohnson in reply toACRELANE

Why not increase the taginact as you are taking a very low dose and get off the pramipexole?

ACRELANE profile image
ACRELANE in reply toSueJohnson

Really don’t want to change anything while I am getting done welcomed relief.

SueJohnson profile image
SueJohnson in reply toACRELANE

Understood.

Simkin profile image
Simkin

I am so sorry to hear this So incredibly frustrating for you.Please do let us know how you get on with your referral.

Believer1234 profile image
Believer1234

So first off I'm going to do what Joolsg suggested and print off everything and leave it at the surgery. I'm going to negate their arguments about the risk of addiction (yes if it works, I will be addicted to the drug but only in the same way that one would be to any drug if it works for them) and the dangers of augmentation (research evidence and the fact that if they are worried about this, then they are in control as the dispenser of the drug). Oxycodene (let's not even worry about Buprenorphine at this point - baby steps!) is licensed for use for RLS and is not red listed in my area. Therefore they are failing in their duty of care to provide me with a drug that could enable me to live a normal life and would help prevent all the long term negative health risks of lack of sleep. I will also threaten to make a complaint to the GDC and seek legal advice as for what I see as a dereliction of duty. I hate to do this as I know that they they are only doing what they think is right but the GP that I saw definitely was open to the prescribing of opioids when I saw her and must have been blocked somewhere in the practice!!!

SueJohnson profile image
SueJohnson in reply toBeliever1234

Use the word dependent not addicted. If you get targinact it only lasts 4 to 6 hours and if you don't take it that often you have mini withdrawals so be sure they prescribe enough for you.

Believer1234 profile image
Believer1234 in reply toSueJohnson

Thanks Sue - good advice. I'm not actually after targinact - just if they are open to it, it opens the door to Oxycodeine which is licensed for rls

SueJohnson profile image
SueJohnson in reply toBeliever1234

Targinact is oxycodone/naloxone and is the only approved one in the UK.

Believer1234 profile image
Believer1234 in reply toSueJohnson

Ah ok 🙂

Ocelot85 profile image
Ocelot85

I go private in London with the Sleep Clinic down Harley st. Dr Sara Mcnellis. My experience is that a GP will never prescribe an opioid without a specialist giving clear guidance to do so.

I am moving to Oxycodin from Pregabalin for 6 months to reduce tolerance and then will be switching back between the two, assuming it works the first time. I actually went into the meeting last week preparing to say a firm no to Ropinerol but she is aware of the change in the USA and said it is only a matter of time until it is mirrored in the UK!

The last 2 months have been hard so I can’t wait to get this letter to get the new meds. I’ve had 12 good years on Pregabalin but I am out of road….

Anyway, going private is not as expensive as you would think. If they do their job you hopefully won’t need to see them more than once a year. At £175 a pop it’s a very small price to pay for peace!

SueJohnson profile image
SueJohnson in reply toOcelot85

You can't just switch. You need to reduce the pregabalin by 25 mg every 2 weeks or you will have withdrawal effects. And you also can't just stop the opioid or you will also get withdrawal effects. A reminder when you start pregabalin again that it will take 3 weeks to be fully effective.

Also although you are on 400 mg or were 9 months ago it should work for a number of years before you need to increase it by another 25 mg and since the maximum is 600 mg depending on your age you might never reach that and if you do then you could switch to an opioid.

On Oxycodone it only lasts for 4 to 6 hours, so be sure your doctor prescribes enough so you can take it that often or you will get mini withdrawals.

Ocelot85 profile image
Ocelot85 in reply toSueJohnson

Hi

Yes there will be a tapering off of both drugs. I’ve been told to get off within 3 weeks which I am aware of very fast. 25mg every 2 weeks just wouldn’t be fast enough at 400mg that’s 4 months.

I wish I had that long but my tolerance to Pregabalin develops much quicker the high it goes. I have to go up by 100mg each time and that will likely only last a year.

Ocelot85 profile image
Ocelot85 in reply toOcelot85

I just got the letter. So it is actually Targinact (Oxycodone/naloxone) which has a half life of 12 hours so I will assume I’d have to take twice a day. I’ll keep a diary on coming off Pregabalin which I am not looking forward too.

SueJohnson profile image
SueJohnson in reply toOcelot85

They say it lasts 12 hours, but it doesn't. If you don't believe this make a post to ask the forum. So be sure you get enough to take every 6 hours.

SueJohnson profile image
SueJohnson in reply toOcelot85

Don't be surprised then if you get withdrawal effects which can be unpleasant.

Very strange on your tolerance to pregabalin.

Believer1234 profile image
Believer1234 in reply toOcelot85

Thanks - I've got the clear instruction from a specialist. The problem is that my GP surgery still refuses to prescribe them!!!

Joolsg profile image
Joolsg in reply toOcelot85

That is actually encouraging to hear! A doctor who is aware of the Mayo and the move away from DAs.

HipHop1972 profile image
HipHop1972

Hello Believer1234, I had exactly the same issue as you’ve described. I saw Doctor Thomas Privately in Cardiff even though I live in NW of England. Doctor Thomas couldn’t prescribe as apparently NHS Wales and England are not compatible. My GP refused to take note of reports and recommendations made by Dr Thomas. So having spent just short of £500 for consultation, tests, hotel and food I had to start over with a Consultant in England who was willing to treat my RLS with Buprenorphine. My GP was still unwilling to prescribe as he said there was no evidence that Buprenorphine worked anyway it wasn’t licensed. I receive a 3 months supply of Buprenorphine 7 day patches in the post from an NHS hospital.

I wish you luck and if you let the forum know your nearest city then I’m sure a member will be able to pass on the name of a specialist who will be able to help you as they usually have private clinics as well as NHS.

HipHop1972

Believer1234 profile image
Believer1234 in reply toHipHop1972

Thanks HipHop - how did you manage to get Buprenorphine from an NHS clinic as I thought you need to get these prescribed by a gp practice? What specialist did you go to? Was it a Neurologist?

HipHop1972 profile image
HipHop1972 in reply toBeliever1234

Hi Believer1234. I saw a neurologist privately in England after the mess up with Doctor Thomas and Welsh NHS.

It’s highly unlikely that you will find a GP that will prescribe Opiates for RLS, even when recommended by a Consultant.

I saw a Doctor Christopher Murphy who is a neurologist at the Alexander Private Hospital in Cheadle, Cheshire and he then transferred me to his NHS clinic at Salford Royal Hospital near Manchester. As I explained he wrote several times to my GP who refused to prescribe Buprenorphine so Doctor Murphy writes an NHS prescription and I used to drive to the Salford Royal Hospital to collect the medication from the hospital pharmacy, that was a 3 hour + round trip in heavy traffic so on instruction from Doctor Murphy they now post it out to my home by special currier.

I hope this helps HipHop1972

Believer1234 profile image
Believer1234 in reply toHipHop1972

Hi HipHop - this is very helpful as it's much easier to find a neurologist who will prescribe! Thank you 🙂

HipHop1972 profile image
HipHop1972 in reply toBeliever1234

You are very welcome Believer1234

Good hunting HipHop1972

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