Opioid recommendation (in the UK)

[Indigirl99]

Hi I’m currently on Gabapentin 1800mg + 2x 15mg of Codine Phosphate but looking to see if anyone has any suggestions what could take the place of the Codine? I take it during the night but it takes over an hour to work, it’s so frustrating. My doctor has just said ‘that’s it’ there’s nothing else they can prescribe, but I’m sure I’ve heard talk of alternatives. Thanks!

[Joolsg]

Sadly, in the UK, RLS isn't taught at medical school or during GP training so doctors are unaware that low dose opioids are highly effective and life changing for RLS.Have you had full panel bloods? Are you on any meds that worsen RLS like anti depressants or anti histamines etc?

Opioids work in a different way for RLS than for pain. In RLS, patients do not develop tolerance or 'addiction' and stay on the same low dose for decades. GPs in the UK still have this 'fear' of opioid addiction.

In the USA the RLS foundation are lobbying the CDC to ensure that opioids are for RLS are treated in a similar way to sickle cell and prescribed 'off licence' at low dose.

The Massachussetts Opioid Study is confirming that RLS patients stay on the same low dose for decades.

I've included links to relevant information you can print off to show your GP.

However, as opioids are not 'licensed' for RLS in the UK, your GP may refuse to consider the available options. If that happens, you will have to see a knowledgeable neurologist or sleep specialist and ask them to prescribe. Prof Walker at Queen Sq in London will prescribe low dose opioids for refractory RLS and iron infusions if serum ferritin is below 100.

Common opioids for RLS are tramadol, Oxycontin, morphine and Buprenorphine.

Tramadol is the only opioid to cause worsening of RLS (augmentation). Oxycontin can cause mini withdrawals as it only lasts 4 or 5 hours for most patients. Buprenorphine lasts 23/24 hours so can be highly effective and is taken once at night.

All opioids have side effects. Constipation ,sweats , wakefulness and anxiety/ depression are common side effects. These can be countered by taking magnesium for constipation and non sedating anti histamines for sweats and low dose pregabalin for anxiety or insomnia.

Let us know how you get on.

rls-uk.org/medical-treatments

massgeneral.org/rls-registry

[Dotmowatee in reply to Joolsg]

I am in the Uk, my consultant suggested Targinact immediately as a treatment for severe rls. My G P took some educating but is now on board. It works .

[Joolsg in reply to Dotmowatee]

Yes, Targinact/Oxycontin does work for many. For some reason, it just didn't work for me. I wasted 5 years struggling badly and Professor Chaudhuri said there was nothing else he could do and I had to accept I had severe RLS and 4 hour's broken sleep and nightly RLS was as best as it would get.Luckily I had been emailing Dr Buchfuhrer who said that was incorrect.

Then Shumbah posted about Buprenorphine and, after some pushing, Prof Chaudhuri said he would not be against it, provided my GP agreed to prescribe.

I am incredibly lucky that my GP did agree. So many refuse.

[Dotmowatee in reply to Joolsg]

So glad you have found something that works. I struggle with sleep. Not sure how much longer Targinact will be effective. I'm still on pramipexole, much to my consternation. I don't take Targinact every day.

[SueJohnson in reply to Dotmowatee]

Are you trying to come off the pramipexole?

[Dotmowatee in reply to SueJohnson]

Difficult, pregabalin does not help or gabapentin, which does not agree with me. Have had an iron infusion, which made no difference. I cannot cope with sleep deprivation when I withdraw from pramipexole. I am on a relatively low dose and have some respite with Targinact twice a week.

[SueJohnson in reply to Dotmowatee]

You said the iron infusion didn't help. I assume that brought your ferritin to over 100 but didn't help? Also you said pregabalin didn't help. How much were you on?

[Dotmowatee in reply to SueJohnson]

My ferritin is about 300 now. I have tried pregabalin at 75g and it barely touched it. It gave me stomach and bladder issues. Clonazepam made it worse. I am on 3 0.088 tablets of pramipexole daily. Have been for many years.

[Joolsg]

Also, I forgot to mention, as you augmented on Ropinirole before starting gabapentin, you may find gabapentin just doesn't work. Dr. Buchfuhrer believes this happens to many people and he thinks the Ropinirole has caused permanent damage.In these cases of refractory RLS, only low dose opioids are effective.

I'm one of those patients.

Gabapentin didn't help me at all.

Oxycontin gave me around 4 hour's broken sleep at night.

After 5 years on Oxycontin and pregabalin I switched to low dose Buprenorphine sub lingual pills.

I started in July 2021 and my RLS went from 36/40 to 0/40 on the RLS severity scale.

It has been miraculous for me.

My GP agreed to a 3 week trial. She knows it has been miraculous. I take 0.2mg at 10 and 0.2 at midnight. Side effects of severe panic attacks are completely controlled with 25mg pregabalin at night.

Hopefully, your GP will read the relevant information and agree to a trial.

If not, speak to Prof. Walker.

Good luck.

[Indigirl99 in reply to Joolsg]

This is brilliant, thank you. I was so upset after speaking to the doctor but you’ve given me so much information that I now feel I can have a much better conversation with them, and it’s calmed me down.

It’s all trial and error and I definitely need to try something else, so I’ll see what they think of a new trial. Failing that, I’ll be asking for a referral.

[Jumpey in reply to Indigirl99]

I want to echo all that Jools has said. I have been prescribed Tramadol and Morphine for RLS in the UK. I hope your doctor is receptive to new information. Good luck.

[RLSofManyYears]

I found Temgesic (Buprenorphine) to be a great help. I started out with 1 tablet (200ugm or 0.2mg) a night and slept right through for 9 months. However I then needed to up the dose to 2-4 tablets. I recently emailed Dr Buchfuhrer and here is his reply, which may be of help:

"Codeine is a very weak opioid and even in high doses does not help patients with severe RLS very much (it likely provides only a fraction of the benefit of Temgesic). The other issue is that buprenorphine products bind very strongly to the opioid mu (Pain) receptor and block the action of regular opioids (likely including tramadol) making the less effective or ineffective). Furthermore, tramadol is a weak opioid/RLS medication."

Note that I have tried codeine myself but it did not do anything for me at all.