Low dose opioids

[Believer1234]

Hi,

Does anyone know a doctor in the UK South East who I can see privately who will prescribe low dose opioids?

I'm on 1800mg gabapentin and still having very bad symptoms.

Thank you!

[Joolsg]

Professor Walker at Queen Sq will do private phone consultations.He will arrange iron infusions if necessary and prescribe low dose opioids.

However, the GP may refuse to take over the care and prescription on the NHS, particularly if Buprenorphine is recommended. Some areas red list Buprenorphine.

See your GP first to arrange full panel fasting blood tests on the NHS and ask whether Buprenorphine is red listed.

Many RLS patients do well on Oxycontin, but I and a few others found it causes mini opioid withdrawals because of its short half life. It only lasts 4 hours, instead of the 12 hours it's supposed to last.

[Believer1234 in reply to Joolsg]

Thanks Joolsg,

What would be the aim of the blood test? I've already done one and iron levels are normal but below those recommended for RLS patients. I've been battling for an iron infusion on NHS but just keep getting stonewalled so I guess I'll have to pay for that privately anyway. GP is due to call me today (to tell me that they won't do the iron infusion) so I will ask about the Buprenorphine - thanks for that 👍😀. Does this mean that if you stop taking the opioids, you would get withdrawal symptoms?

[Joolsg in reply to Believer1234]

It will save a lot of money getting private blood tests.Normal bloods are not 'normal' for RLS. Serum iron needs to be above 60, serum ferritin above 100, preferably 200, but some need above 300.

One day, iron infusions will be standard RLS first treatment, but the UK has a long way to go.

Some NHS haematology departments do now agree to infusions for RLS. St George's in Tooting, the Royal Cornwall in Truro, hospitals in Cardiff and S.Wales.

If you stop opioids, RLS is the main withdrawal symptom. It's why many addicts fail withdrawal. They have to tolerate 4 to 6 weeks of severe, untreated RLS.

Some don't get the mini opioid withdrawals. Madlegs takes 10mg Oxycontin twice a day.

I wasted 5 years taking 25mg Oxycontin 3 times a day and 150mg pregabalin. I still had very severe RLS.

Buprenorphine stopped my RLS completely from Day 1. It has the longest half life of all opioids and that's why it is so effective.

[Believer1234 in reply to Joolsg]

Thanks Joolsg - do you mean it would save money doing the blood tests on the NHS? I have already done this and and fall below the 200 sf so I know I would be a candidate for an iron infusion? It seems that my GP practice can't refer out of the area so my request has been turned down! ☹️

[Joolsg in reply to Believer1234]

Yes that's what I meant.It's so frustrating that a postcode lottery applies in the UK.

Sadly, it looks like you may end up paying privately for an infusion.

But Prof. Walker can arrange it and he may be able to suggest a way to get it on the NHS.

Hopefully it will work. 60% of RLS patients show dramatic improvement, 20% good improvement but 20% don't respond.

[Believer1234 in reply to Joolsg]

Thank you. Yes its so frustrating. GP consultation as expected... iron levels in normal range etc..- just go round in circles! She couldn't say if they would be able to do a shared care agreement for a potential burenorphine prescription. It would have to be evaluated by the practice and by the pharmacist ☹️

[ikc42 in reply to Joolsg]

Hi,

1> is the 8mg codine content in Solpadeine considered a significant opiod input? My wife takes 3 tabs at night for RLS. Relief is very intermittent.

2> When you refer to Oxycontin, is this the notorious Perdue Pharma product? I thought that was more or less dead?

3> Is it the codine in solpadeinde that gives RLS relief? Would Codipar be a more effective substitute - 15mg codine and zero caffine.

Thanks to you and others for all your great advice in this forum. I look forward to your thoughts on my questions

P.

[Joolsg in reply to ikc42]

1.Codeine tablets without paracetamol would be better. Long term paracetamol can cause stomach and liver issues. Here in the UK, 30mg pills are available.

2. Oxycontin is still being produced. It has been trialled for RLS as Targinact ( Oxycontin with Naloxone to avoid constipation). Some do well on it. Others find the short half life (4 to 5 hours) causes mini opioid withdrawals, the main symptom of which is increased RLS. The Purdue/Sackler scandal showed they had lied about how long Oxycontin lasts AND its opioid addiction properties.

3. It is codeine that gives relief. Opioids are very effective for refractory RLS.

ALL opioids can cause addiction if there is a history of abuse.

The Massachussetts Opioid Study by Dr Winkelman at Massachussetts General Hospital is showing that addiction and tolerance ( the need to increase the dose when a drug loses effectiveness) are extremely low. The doses used for RLS are lower than for pain and RLS patients seem to stay on the same low dose for years without it losing effectiveness or having to keep increasing the dose.

I hope your wife is aware of the Mayo Clinic Algorithm for RLS?

Iron treatment and eliminating trigger meds should be tried before pregabalin or opioids.

[ikc42 in reply to Joolsg]

Thanks Jools,

Yes on the Mayo algorithm issue. And have discussed this with the GP. A nice man and wiiling to listen.

1> What is the name(s) of the 30mg Codine pill / tab?

2> Is 25 to 30 mg codine / day via solpadiene or codipar ( or your suggested alternative 30mg tab) likely to develop into an addiction / withdrawal problem?

Thanks again,

P

[Joolsg in reply to ikc42]

It's just known as codeine. You can get it in various strengths. Unlike solpadeine, you can only get codeine above 15mg on prescription from your GP.Opioids for RLS are usually needed for life. If you stop taking opioids, you will probably experience withdrawal symptoms. It depends on the dose, the length of time taken.

In your wife's case, she clearly has moderate to severe RLS.

Fill out the IRLSS form and it will tell you ber RLS score.

Addiction can happen to anyone. It's down to genetics/personality/ history of abuse etc.

However, the Massachussetts study does show addiction ( craving the drug/increasing the dose etc) does not tend to happen when taken at the lower doses for RLS.

But obviously, there will always be exceptions.

ALL the drugs used to treat RLS can be abused. All can cause severe withdrawal symptoms, but as we need to keep taking meds, that doesn't happen unless we stop taking them or switch between meds.

Dopamine agonist withdrawal is hellish. Many experts say it's worse than opioid withdrawal.

It sounds like your wife would benefit from a visit to a sleep clinic/ RLS expert.

If you live near Cardiff, Dr Jose Thomas is excellent.

[ikc42 in reply to Joolsg]

Thank Jools - We live in Ireland. She has been the Sleep Study route some years ago which led to mirapexin and on to increasing doses of that which gave excellent relief, until it didn’t give any relief, and the RLS got much worse (augmentation) , and then gradual withdrawal from mirapexin over months of sheer hell for her. During this time we discovered this forum and felt such relief just to know that there are people, like you, and unlike most doctors, who actually understand the curse that RLS is, and have developed the knowledge as to how best to try to control it. We are trying the Codine route at the moment. I spoke with our pharmacist asking was there a codine-only tab and was told Codipar which has 30mg Codine (but also 500 mg paracetamol). Are you saying that in the UK you can get tabs on prescription which are codine only?

Thank you for all your help and advice.

P

[Joolsg in reply to ikc42]

Yes, here in the UK we can get codeine without any paracetamol. The official name is codeine phosphate. But only GPs can prescribe it. We can buy codeine with paracetamol at the local pharmacy.After withdrawal from Mirapex, it can take some time to find the right combination of meds.

Madlegs and Involuntary Dancer are in Ireland, and both have managed to get opioids from their GPs. Madlegs takes Oxycontin, Involuntary Dancer has been successful in getting Buprenorphine.

It does sound like your wife may need a different, stronger opioid, or alternatively, pregabalin.

medicines.org.uk/emc/produc...

[ikc42 in reply to Joolsg]

Many thanks, Jools.

P

[67Waterman]

Professor Walker at Queen Square is very good. With him, I have progressed from Gabapentin to Pregabalin (neither of which worked) and am now on Oxycodone 5mg (which I get through my GP prescription at the local pharmacy - but only after being instructed by Professor Walker.

He has started me on the lowest dosage of opioid to see how I go. I will be giving it another few weeks but will probably ask him to further increase my dosage to 10mg. No withdrawal symptoms during the day so far.

[Believer1234 in reply to 67Waterman]

Thank you. Apparently it depends on the GP practice as to whether they will prescribe opioids off licence even on a shared care basis. Did you get an appointment with him through Doctorsonline? 🙂

[67Waterman]

No ... I had to go to my GP and ask him to send a referral letter to Professor Walker. I finally got an NHS appointment ONE YEAR LATER. If you can afford to go privately, then just phone up his secretary.