This is a link to a study/ warning of the dangers of opiate use. Related to sleep quality and breathing problems.
It is not a major problem for the low doses used for refractory rls.
It is really interesting that it recognises the use of opiates for rls and the distinction between that and the much higher doses for chronic pain.
This may be useful for some of us to have as support where a doctor may have 'qualms' about continuing with opiate prescription.
Sleep well.😴😎
Thanks Madlegs,
I'll print that off and add it to my RLS file. As you say, very useful ammunition in case my GP gets iffy about opioids.
My GP surgery stopped prescribing opiates due to the health authority stoppinjg doctors prescribing opiates. We were given no warning just told that that was the last prescription I was a nurse so immediately started weaning myself off them. I have not noticed any worsening of symptoms since stopping these tablets. Here I having been up since 1-30 am. I slept fairly well on Wednesday night which is a pattern that has been happening for some time one night a week I do get ,5/6 hours but the rest of the time I have a couple of hours or no sleep at all.
Is this in England? Very worrying if so. NICE has specifically licensed Targinact for RLS so it’s not a NICE or NHS directive.
Yes this is England.
Wow- we need to be more vocal and campaign about this. Opioids are the drug of last resort for most of us with severe, refractory RLS.
That is TERRIFYING.
I feel we should all be campaigning now about this before it becomes ‘the norm’.
I think I’ll write to the trustees and ask if we can start a campaign- most RLS experts prescribe opioids ( methadone is now the preferred option) and yet many neurologists and doctors are still so ignorant they won’t consider them.
Have you shown your doctors all the research papers from the USA? Is it just your surgery or the whole NHS trust that is refusing opioids? I’m appalled you were given no warning or help/advice on safe withdrawal.
It is the Newcastle / Gateshead health trust. Nothing was mentioned at all until everyone on dihydrocodeine got a letter saying they were not prescribing it anymore. I think it is a kneejerk reaction to all the headlines about the opiate epidemic in America. Not even being helped to find an alternative.
That’s so worrying. I am stunned.
It was hard weaning myself off it and now I have nothing that works as well. I am so tired as I can't sleep I hate putting the heating on as that worsens the rls so I have a fan directly on my legs on the highest setting. I actually fell asleep standing up fell over backwards into the sideboard and tipped the fish tank up and water went everywhere luckily it didn't lose all the water. I don't know who was more traumatised me or the fish.
Have they banned all opioids? What about Targinact? That is specifically licensed for RLS by NICE. Could you take the NICE guidelines and ask for a prescription?
nice.org.uk/advice/esnm67/c...
I only know about dihydrocodeine I was prescribed it some years ago to help with my pain from osteoarthritis and RSL but now I am high and dry. Trying to survive on little sleep.
I hope they will give you Targinact- it does work for RLS at low dose (up to 30mg). Definitely go back to your doctors with the evidence.
I do know that higher doses of opioids for pain relief have been under scrutiny but that is different to low doses used for RLS.
You will need something though- perhaps pregabalin?
Hi, this is worrying!
I don't know if I can add any clarity to your situation, but I'll try.
It may not be true in your case, but it is worrying how little people generally know about how the NHS actually works.
Firsly just to allay any confusions, you mention "Health authority" and there are currently no such thing, they diappeared many years ago. The way NHS services are currently managed is that GP services are funded and overseen by NHS England (Scotland, Wales, NI) along with some specialist services.
Secondary NHS care services are managed and provided by individual NHS Trusts (including separate trusts for hospitals, community services and mental health services) and some private companies.
NHS Health providers are paid under contract by local Clinical Commissioning Groups (CCGs) that commission services on behalf of the population in a given geographical area.
As an example, where I live any secondary health care services I need are commissioned by Morecambe Bay CCG that cater for the needs of people living in North Lancashire and South Cumbria. Through their contracts I have received care in hospitals of the Morecambe Bay NHS trust, Lancashire Care Trust and Lancashire Teaching Hospitals NHS trust.
The reason I say all this is because different bodies in the different organisations have different "governance" arrangements for the prescription of medicines. These include - -
1) The Medicines and Healthcare product Regulatory Agency (MHRA) "licenses" medications, that allows substances that are covered by the various medicine laws to be prescribed for specific medical conditions. Licensed substances can be prescribed for other unspecified conditions as long as they are licensed for something. This is called "off label" prescribing.
Nobody who is qualified to prescribe "legal" medicines can prescribe something that is NOT licensed whether they work for the NHS or not.
I will check, but as far as I am aware Targinact is still licensed for treating refractory RLS. If this is the case, strictly speaking, there is no legal reason why it can't be.
2) Guidelines issued by the National Institute for Health and Care Excellence, (NICE). Guidelines are evidence based and are produced to advise NHS doctors and other NHS health professionals how to manage particular disease conditions.
I'm not 100% sure what their legal status is. It does appear that health professionals are not compelled by law to comply with the guidelines. However, why wouldn't you, since they are based on research as to what's the best. I would imagine if someone prescribed something that wasn't mentioned in the guidelines OR didn't prescribe something that was mentioned AND the patient came to harm. then possibly they could be considered negligent. Which is illegal.
Of concern is that there are NICE guidelines on the management of RLS and to date, I have never met a doctor who even knows they exist.
The current guidelines, which are due to be reviewed next year do mention the use of "a weak opiate" as an "alternative" medicine for RLS in some cases.
cks.nice.org.uk/restless-le...
Searching for particular drugs as listed in the British National Formulary (BNF), gives information on drug names, what they're licensed for and information about doses, side effects, interactions (with other medicines) and contraindications.
The entry for Oxycodone witb Naloxone (Targinact) currently states the uses of it to be chronic pain and
"Second-line treatment of symptomatic severe to very severe idiopathic restless legs syndrome after failure of dopaminergic therapy".
bnf.nice.org.uk/drug/oxycod...
3) Earlier this year the MHRA carried out a review of opioid medicines. I believe as a result, it was decided that Opioids, including Oxydodone should not be prescribed for chronic pain. I don't think there was any mention of RLS in this and the decision does not yet appear to have been recognised in the BNF.
4) The prescribing of particular medicines is also influenced by other organisations, some at a regional or local level. E.g. I do know that the "consortium" of the 8 CCGs in Lancashire have a "medicines management group" which directs prescribers on what can and cannot be prescribed. This reflects or may even precede what national organisations state.
Overall then, whether nationally or locally, some medicines are therefore "blacklisted". This means in many cases no prescriber can issue a prescription for them. In some cases only NHS prescribers may be restricted. Some medicines cannot be prescribed by GPs but can be by consultant specialists.
The reasons given for banning medicines usually include
They are of no medical value
They are no more effective than alternatives
They are considered too risky e.g. opioids.
They don't offer value.
In the case of some medicines it would seen clear that the above are valid, but in some cases it appears that the sole reason is cost.
I do know that a few years ago a blacklist was introduced locally that meant my GP had to stop prescribing me something. I challenged my CCG over this and they gave the reason that this medicine was "no more effective than the alternatives". I was able to obtain the "evidence" in which they based this decision which I would politely describe as rubbish and in fact amounted to, it cost 4 times more than the alternative, (despite the evidence I have that clearly shows its greater effectiveness in my situation.)
You may not have noticed and it has been introduced in some parts of the country earlier than others, but a couple of years ago NHS prescribers were told that they could not prescribe a branded drug when a generic version existed. So for example UK GPs cannot prescribe Mirapex only Pramipexole, not Cialis only Tadalafil, not Lyrica, only Pregabalin, etc.
If anyone objects to this, a GP can issue a (free) private prescription. It does mean you have to pay the pharmacy the full cost of the medicine.
More recently GPs have been banned from prescribing "over the counter" medicines, so you now have to pay the full cost of these.
This is simply and purely a matter of cost, which is justified in most cases.
I do recognise that the NHS bill for medicines is absolutely massive and wastage levels are high. Reducing unnecessary drug costs will help secure the sustainability of the NHS. I suspect that there is some truth in the claim that if drug costs were to increase significantly, the NHS could be bankrupted.
I do get the impression that where specific drugs are blacklisted for one specific situation, some prescribers are refusing prescriptions for other situations. E.g. the drug I was using is licensed and prescribed for a general condition, whereas I was taking it for a more specific condition. This may be a mistake on their part, they may have misunderstodd the directives. A ban on the use of Targinact for chronic pain may not necessarily ban it for RLS.
I will try and investigate exactly what the position is in relation to opioids for RLS. Certainly, I think it irresponsible to withdraw an opioid and not offer any alternative.
Furthermore, something which may not apply in this case but in the case of OTC medicines is that an "exception" can be claimed and if the claim is accepted then you can still get a prescription for OTC medicines. This does NOT apply to branded medicines, there are no exceptions.
Grounds for claiming an exception include -
1) you need treatment for a long-term condition, for example regular pain relief for chronic arthritis or inflammatory bowel disease
2) you need treatment for more complex forms of minor illnesses, for example migraines that are very bad and where OTC medicines do not work
nhs.uk/common-health-questi...
I know this is long winded but I hope it at least explains the situation even if it doesn't help. It may be your doctor cannot justify withdrawing the opiate.
Just a quick question. I’ve just re read your posts and realise you’re on pramipexole.
If I remember, you were suffering augmentation.
So , presumably you were on the opioids for your back pain and presumably a high dose?
Maybe your local health authority have stopped prescriptions for pain ( usually much higher doses than for RLS).
However, RLS is caused by opioid withdrawal so you should have been weaned off slowly- to do otherwise is cruel and borderline negligence.
If you are still on pramipexole- please do read up on Augmentation and consider slowly getting off it and onto an alternative med like pregabalin or Gabapentin.
Hi, just to make you aware of the fact that "local health authorities" have not existed since 1995. They were replaced by Primary Care Trusts, (PCTs).
The PCTs were disbanded in 2013 and were replaced with Clinical Commissioning Groups. CCGs do have some authority over what doctors can and can't prescribe, but have no actual funding or managerial control over GP services.
I've observed that quite a few issues arise from people's misperceptions about the NHS,which is to a large extent now a franchise. Whereas all NHS patient's care is funded (indirectly) by the government, the NHS, as a single organisation no longer exists. Around 7% of "NHS" services are provided by private companies e.g. Virgin and although patients cared for by these aren't charged anything and may receive letters with the NHS logo on them, they are NOT NHS managed or owned.
This situation explains why the services you get vary significantly between different parts of the country and why they have become so fragmented.
Unfortunately the evidence summary you give a link to is dated 2015 and may now have superceded by the findings of the MHRA Expert Working Group review of opiate usage commenced in February 2019. I had heard that this group recommended that Targinact no longer be licensed for chronic pain. (The other condition it was licensed for). I do note that none of the "experts" was a neurolgists. It's possible that the license for using Targinact for RLS may also be withdrawn.
I note that the BNF entry for Targinact still states that it's licensed for both, so it may be either that the license hasn't been withdrawn yet or the BNF has not been updated or that although still licensed doctors are banned from prescribing it.
I'm trying to get hold of the reviews recommendations.
Thanks Manerva
Excellent detective work. I really hope it’s still licensed as that helped me persuade my GP to let me have tramadol during a very difficult withdrawal from Ropinirole. I would hate for others who are suffering to be denied the drugs of last resort.
Another option may be Low Dose Naltrexone. It’s available on private prescription and costs about £30 per month.
I know of at least 2 people on here who take 5mg a day and it’s stopped their RLS. You can’t take if on opioids but as you’re no longer on any, it would be worth a try. There is an LDN Facebook group that gives more information and where to get prescriptions in the UK.
You have to take something. Maybe film your nights and show to the negligent doctors who have literally left you high and dry.
I have established that the UK Medicines and Healthcare products Regulatory Agency (MHRA) commenced a review into the use of opiates in February 2019. I had heard that the MHRA had recommended that the use of Targinact for chronic pain (but not RLS) be discontinued. However, as yet I have been unable to verify this.
Public Health England produced its own report on dependence on prescription medicines in Sept 2019 and the MHRA responded to this in terms which suggested that they haven't yet completed this review.
In this response and in several other places e.g. the UK Gov website, the MHRA have repeatedly issued this statement
"Patients on an opioid medicine or their relatives who are concerned should speak to their healthcare professional as treatment with opioid medicines is individually tailored to each person’s situation."
This doesn't seem to be saying that the MHRA have "banned" the use of opioids for ALL patients indiscriminately.
In which case, it appears that your GP surgery has made their own decision about this, as a practice, rather than on an individual basis as the MHRA states it should be.
It might be worthwhile you asking your GP surgery abut this and asking them on what evidence or national guideline they have based this decision. If you're not happy with their response then you can take this issue to NHS England.
As as public body NHS services are accountable to service users and although it might be easier to passively accept what seem to be arbitrary rulings by these organisations when in fact they may not have any real legitimacy.
IN addition NICE have issued "Guidance on prescribing" for which I can find no publication date, but which appearsd to be current..
The guidance does state
"Deprescribing is the process of discontinuing or reducing the dose of medicines, supervised by a healthcare professional, with the aim of managing polypharmacy and improving outcomes. Deprescribing requires careful counselling and shared decision-making with patients, and is considered part of routine clinical care."
bnf.nice.org.uk/guidance/gu...
Did you experience this? Or will you simply told they would no longer prescribe?
We were just informed by letter and when asked about an alternative the doctor said there wasn't one. Dihydrocodeine was originally PX for pain and it did help with RSL as well I was only in bed for 2 hours this evening and I had to get up as my legs were going mad, hopefully it will stop at some time in the early hours. I am so tired I have been known to fall asleep holding a cup of tea which I drop and spill it everywhere. I did tell my doctor about the problem which is why she recommended this website. Obviously if I could have a alternative to pramipexole I would have to gradually drop the dose to nil to be able to try something else. I do admit to occasionally taking some co-codamol to try to help but now I am wary of becoming dependant on that if I take it too many times. There are days when I don't get out of the house as I am too tired.
Obviously it is up to you, but I believe you have grounds for complaint. Deprescribing a drug without any discussion with you is contrary to the NICE guidance. Since you may be suffering withdrawal effects from the Dihydrocodeine this is particularly an issue.
However, I note the Dihydrocodeine was prescribed for pain, not RLS in which case, if you contunued to take it fir RLS, for which it was not prescribed and for which it is not licensed, you might be accused of abuse.
In any event it seems you need a review of your RLS medication and a review of your pain management, i.e. if you are still experiencing it.
A suggestion is that you request either Gabapentin or Pregabalin for your RLS. That should help bring your R L S symptoms under control. It will take some weeks to do this. The usual starting dose of Gabapentin is 300 mg. It can then be increased by 100mg every 1 - 2 days and an effective dose will probably be at least 900mg a day. Once the Gabapentin is beginning to work, then you can start to slowly reduce the Pramipexole.
It may be that the doctor prescribes the gabapentin in 3 divided does e.g. 100 mg 3 times a day. If so, then this because the licensed use of Gabapentin is not for RLS but epilepsy or nerve pain, which are not circadian like RLS. You should really take up to 600mg ONCE a day at night. Doses higher than 600mg can be divided into 2 split doses 1/3 late afternoon and 2/3 at night.
You may have to be fairly assertive and proactive about your RLS medication review, particularly since GPs tend to lack expertise in dealing with RLS.
Here is a link to the NICE guidelines for RLS, this is what doctors should be doing
cks.nice.org.uk/restless-le...
Here is a link to authoritative information about Gabapentin
bnf.nice.org.uk/drug/gabape...
Here is a link to a study published in the British Medical Journal about the effectiveness of Gabapentin for RLS.
RLS UK have published a paper on Gabapentin, unfortunately I can't copy paste the link for it, a pdf, on the i device I' m currently using.
Thank you for sharing this information. I take low dose opioids for RLS and the side effects are a concern. Information is power!
Hi, dramadol not only stops me from thrashing my legs all night long, but has also stopped me coughing my head off at night. My doc seems a little leery about this, but thankfully she believes me and has continued to give me enough to last until the next visit. The only problem I have is with constipation. Eating prunes and using miralax helps.
All this is okay but, I have suffered so long,im keeping what works for me, good,bad,or otherwise!
If not, I will not make it!
You can possibly do that in the US, it isn't always a choice here in the UK.
I take opiates (Tramadol and codeine) forRLS . The only thing that works for me . I have recently had to add a CPAP machine for sleep due to apnea. I thought I’d feel better during the day then re. Fatigue and no energy , but I have not seen improvement in that area. I am sleeping decently most nights however which is wonderful . What a tightrope this condition is !
It may not be my place to say this, but I hope you, or your doctor , is aware of the connection between opiates and sleep apnoea. Opiate use can cause sleep apnoea.
Furthermore taking opiates when you suffer sleep apnoea can lead to "ventillatory compromise".
This is a known risk. If it's the case that you didn't know about it, I'm just letting you know.
Thanks for that info . It seems I’m between the devil and the deep blue sea. The drugs seem to be the only thing which can control my RLS , and I understand that opiates is a bona fide treatment for the condition when other drugs don’t work . I’m on a mission to get off these and conquer my RLS thru other means but I’m not there yet. I am presently using CPAP machine as well to counteract sleep apnea. I’ll be cognizant of the situation , I’ll have to research ventillatary compromise.
What is your treatment of choice then for these legs ???
You're correct that opiates are the treatment of choice for RLS if nothing else works.
It's a Hobson's choice really as if nothing else works, there is no choice.
Being aware of the possibility of ventillatory compromise enables it to be avoided, I wouldn't suggest you stop taking an opiate for RLS.
Ventillatory compromise mean a deterioration in respiratory function. Opiates depress the depth and rate of breathing so that oxygen levels fall and carbon dioxide rises. It can lead to respiratory failure.
The CPAP will counteract this.
I currently take Gabapentin, which is working well for me at the moment.
Sleep studies and RLS
Anyone else a rapid opiate metabolizer?
Anyone here have obstructive sleep apnea too?
Here's Dr Buchfuhrer's response to Temgesic use
