Opioid Analgesics. Withdrawal from patients already prescribed long term.

[Bodstar11]

I despair when I see this need for a person to get a "High" from a drug. These are the people who are causing medication to become higher class drugs and in the case of Codeine, which I am fighting the MHRA and Depth of health, to being withdrawn from sensible patients who benefit from relief of pain in sensible guideline doses. In my personal case, the withdrawal of Co codamol from my parents who suffer badly from chronic untreatable pain. Doctors are throwing patients on to anti depressants and nerve affecting drugs like Pregabalin and Gabapentin. In a lot of cases without consultation. They are prescribing these drugs out of panic and the inability to prescribe opiates anymore. And yes, it has affected the quality of life for both my parents and by God am I going to fight it everyway I possibly can. So spare a thought from people losing out on effective medication due to abusers ending up dependent addicted or dead. It's selfish and completely unfair. The MHRA is instructing GPS to do this with a "sudden" host of dangers from opiates..constipation to name a few. These warnings are already on the information leaflet but are being "used" now to validate why they are being withdrawn. There is a growing number who are in the same instance as myself, a carer not to mention patients angry at the current situation. A "Pulse" investigative task force was sent out by the MHRA basically to get the wheels in motion at a decision and view that was already there. Patients are losing out here remember. P.S..a GP prescribed my Father with a high dose of daily anti-inflammatory drugs. (Non Steroidal Anti- Inflammatories. And he has 2 Duodenal Ulcers...how's that for an example of a confused, at a loss, GP with limited options.

[Hidden]

With the intention of being helpful.

There are several communities in Healthunlocked specifically for chronic pain and pain which you might find more helpful/supportive with your case.

The use of opioids for RLS is a different scenario to the use of them for chronic pain and the RLS sufferers who use opioids to control their RLS are probably a minority.

Best wishes

[Bodstar11 in reply to Hidden]

Good morning. Yes, I apologise that I have intercepted and added to a debate primarily based on the terrible condition of RLS. I have suffered from it. It seems though, unexpected evidence, makes me deduce that Co codamol can be beneficial in respects to relief from RLS however, in a process up and running. These sufferers may, find themselves without Opioid medication in the future. It'seems a fair prediction to myself. Thank you and kind regards.

[TheDoDahMan]

I am in 100% sympathy with what you have written here. The effects of the hideous Drug War have made worse pretty much every harm which its authors had promised to ameliorate. Bless you for every effort you make to help educate the general public in this matter.

[Bodstar11 in reply to TheDoDahMan]

DoDahMan. Thank you very much for taking the time to respond to my issue. Yes, indeed. It is a case of everyone being tarred with the same brush regards to being a patient on Opioid Analgesic long term whom, experience none of the dreadful side effects which are being used freely now in retteric to validate taking them off I.e Co codamol. I don't doubt some people are abusing these. I would have thought a Doctors eye would pick up on this due to history and what they see of the patient. Anyway I am keenly and gratefully receiving more stories on injustice from long term chronic pain sufferers. I will keep informed. Kind Regards. You can join the Change.Org petition if you wish online.

[Hidden]

Please be cautious about lumping all opiate users into one barrel. Many of us with RLS who take opiates do not get high from them and maintain the same dose for years and years with good control. I know that for me. I may take up to 20 mg of oxycodone for 4-5 days in a row to control my horrid RLS, only to not take them for several days after that because I am not having RLS. No withdrawal nor cravings when stopping the oxycodone (not Oxycontin) cold-turkey if it not needed.

I know the media and the internet give a high number for addiction for people out in the general public. For people using opiates for pain the rate is 21-29 percent for misuse and 8-12 percent for developing opiate use disorder. In contrast, people who use opiates for RLS develop addiction issues at a rate of 1% or less per the studies from the RLS Foundation

As someone who was seriously considering suicide for my severe, unremitting 24/7 RLS, the risk was worth it. I have maintained the same low dose for at least the last 10 years with the exception of bumping my low-dose methadone by 10 mg a day a few years ago to a total of 30 mg which is still a low dose - less that the dose used for chronic pain according to my neurologist. I also have my life back, was able to work before it was my time to retire (love it!), can fly, ride in the car, go out to eat or the movies and not irritate my husband all night with my getting up and down or waking him up to walk with me in the middle of the night. These drugs have been life-changers for me

There is a risk for any drug use, be it addiction, side effects up and including death. My physician and I have examined the risks and found the risk versus benefit to be worth it.

Just my humble opinion

Jerold in Citrus Park, FL USA

[Bodstar11 in reply to Hidden]

Jeroldin..I am sorry your illness is affecting your way of life. I think you have misunderstood me completely. The main reason, I reiterate again, that Opioid and other drugs to an extent, are being made up to higher classed drugs in the legal sense, is due to abuse. You don't abuse them. You use them with sensible prescribed use. People who take more than you should for the "High" is adding immensly to the National Statistics for Opioid deaths. More often the Opioid is a Contributory factor. To explain further. If the deceased has traces of an Opioid in their system, with other drugs involved, then this is classed as an Opioid death..even although there could be a high level of Alcohol or Benzodiazepines. That statement is an example. I hope you can see my point. And I am in no way classing you as an Opioid abuser. Quite on the contrary..the point i'm stressing to make. Kind regards.

[Hidden in reply to Bodstar11]

My apologies if I misread your article

[Bodstar11 in reply to Hidden]

No problem. You are more than welcome to sign the On-line petition regards to prescribing long term chronic pain sufferers like yourself. I wish you improved health and wellbeing. And you validate my point to a greater extent in your original response. Kind regards.

[Hidden in reply to Bodstar11]

Sure - can you publish the link or have I missed it somewhere in the thread

[Crex]

I take lowish dose of Pregabalin for sciatica but it is cocodamol which helps the most and for restless legs. I can’t take NSAIDS so withdrawal of cocodamol reslly worries me as there is nothing else for me.

[Bodstar11 in reply to Crex]

I am sorry to hear if your RLS condition. I have suffered with this sporadically and know there's nothing worse needing sleep when you feel you could jog or jump about the majority of the night. Although my campaign is more based on the long term chronic pain sufferers plight. You are more than welcome to contribute iron, sign the Change.Org Online petition. Kind regards and wishes for improved help.

[Bodstar11]

Crew. Thank you for your comment. It seems that the beneficial effect on pain suffered like yourself, has been ignored. Forced withdrawal is the only term I can use. They may phone you or assess you however, the main aim is too remove them from you. Hence my anger and have caused the necessary actions I have taken. I wish you well. I will add here. Do not worry, this may not be the intended action that your GP/Surgery is imposing. Thank you again. I will add it to my portfolio of carers/patients that I have stored already. And it'seems growing. Shocking. Kind regards.

[Hidden]

In order to prevent possible confusion.

There are significant differences between the prescription of opioids, and other medicines for chronic pain and prescriptions for RLS.

In the UK there are two separate sets of national guidelines for the two.

The NICE guideline [NG193} (April 2021) is the latest for chronic pain.

The NICE CKS (Nov 2020) is the latest for RLS

NG913 section on rhe pharmacological management of chronic pain recommends that antidpressants be prescribed for chronic pain, (paras 1:2:7. 1:2:8 and 1:2:9)

Antidepressants make RLS worse.

Para 1:2:10 states "Do not initiate any of the following medicines"

antiepileptic drugs including gabapentinoids,

antipsychotic drugs

benzodiazepines

corticosteroid trigger point injections

ketamine

local anaesthetics

non-steroidal anti-inflammatory drugs

opioids

paracetamol

Para 1:2:11 states

"If a person with chronic primary pain is already taking any of the medicines in recommendation 1.2.10, review the prescribing as part of shared decision making:

explain the lack of evidence for these medicines for chronic primary pain and

agree a shared plan for continuing safely if they report benefit at a safe dose and few harms or

explain the risks of continuing if they report little benefit or significant harm, and encourage and support them to reduce and stop the medicine if possible."

The NICE CKS for RLS states

"First-line recommended drug options for people with frequent or daily symptoms are either:

1) A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or

2) An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications)."

The CKS also states

"A weak opioid (such as codeine), taken intermittently or regularly (depending on symptoms), is an alternative, particularly for people with painful symptoms of RLS."

The CKS also states

"Address any underlying cause that may have precipitated or exacerbated restless legs syndrome (RLS). For example

For people with significant sleep disturbance, consider a short course of, or intermittent use of, a hypnotic (benzodiazepine or Z-drug).

An existing drug that may be precipitating or exacerbating symptoms — consider if changing or stopping it is an option." - This includes antidepressants.

There are clearly contrasts between the two sets of guidelines in relation to antidepressants, gabapentinoids, opioids and benzodiazepines.

Although not identified in the CKS for RLS NICE more potent opioids are recognised as a treatment for "refractory RLS".

In the UK Targinact (oxycodoneI is licensed for refractory RLS.

Methadone and more recently buprenorphine are used for RLS.

It does appear that co codamol (paracetamol and codeine) or codeine for RLS may be useful for short periods or in conjunction with a first line RLS medicine, but in the longer term low doses of more potent opioids are more effective.