How much codeine should I take?

[Delilah162]

I’ve just had telephone consultation with a G.P. I’ve had no sleep for 4 nights, I’ve stopped the pramipexole completely now. Took the last one on Sunday night. She’s just prescribed me Quinine!! For cramp I said it’s not cramp it’s rls and plmd! I’ve managed to persuade her to give me some codedine. She’s prescribed 28 at 25 mgs and said only take on when I’m desperate. I asked her for buprenorhine she said that would need to come from a specialist and she’s not sure my practice could then prescribe. 🤷‍♀️ what an earth! Do any of you know how much codedine I should take please? 😊

[LotteM]

That varies between people and their situation. The codeine may not be strong enough to quell all symptoms, especially since you have just stopped the pramipexole. But it is all you have currently. Just try one and see what it does. It may help to take the edge off. Take another after an hour or a bit more if it doesn’t seem to do anything.

Did you bring the Mayo Clinic Proceedings to your gp? Or printouts of the rls-uk.org website. She clearly knows nothing about rls and its treatment.

[Delilah162 in reply to LotteM]

I suppose I can but try. I’m soooo frustrated 😩.

Yes I had it printed out in my hand and was reading it’s from it telling her peeps on here use it and have got their lives back.

I’m going to book a private consultation with Dr Jose Thomas as I can’t cope with no-one knowing what to do with me, my neurological is very fourth coming. Thank you for replying xx

[LotteM in reply to Delilah162]

So sorry. It is frustrating, isn’t it? Dr Thomas seems to be a good one. I am mot in the UK, so don’t know the details of the NHS situation. I understand you’ll have to find out whether buprenorphine is redlisted in your area. If so, he prepared to discuss a way around it.

Meanwhile, I hope your symptoms settle quickly to a somewhat acceptable level, together with the codeine. And that you get to see a more knowledgeable and sympathetic doctor soon. 🤞🏻🤞🏻

[Delilah162 in reply to LotteM]

It’s really frustrating! I’ve heard good things about him and he’s in Wales the same as me so should be more straight forward with no borders and different NHS trusts! Yes I’m going to phone my practice tomorrow and ask if it’s redlisted.

See thank you so much that’s very kind of you 😊

[Jumpey in reply to Delilah162]

Dr.Thomas is knowledgeable and will orescibe opiods including buprenorphine and methadone.Good luck.Hang on in there. Things will get better.I used to take 30mgs of codeine but have never taken DAs.

[Delilah162 in reply to Jumpey]

Thank you, that’s great to hear good things about him. I’m hoping to get an appointment booked today. Do you take buprenorphine? 😊

[Dotmowatee in reply to Delilah162]

I am in the South West, Targinact which is an opiod is licensed for RLS in the UK. It's on the information leaflet in the box ! I find it very effective. Tell your doctor to do a bit of research !

[Delilah162 in reply to Dotmowatee]

Oh right I’ll have a Google of that now. Can I G.P prescribe that then?

[Dotmowatee in reply to Delilah162]

Yes, but he needs to be aware of the need for opiods in severe restless legs. My doctor and pharmacist are excellent. I educated my local neurologist too.

[Delilah162 in reply to Dotmowatee]

You’re very lucky because mine are pure poo! I’m sick of fight for everything 😩

[Dotmowatee in reply to Delilah162]

Be assertive and insist on seeing another doctor or get referred .

[Jumpey in reply to Delilah162]

No morphine.

[Delilah162 in reply to Jumpey]

Is Targinact morphine based?

[Jumpey in reply to Delilah162]

No but it is an opioid.

[Delilah162 in reply to Jumpey]

Roger that thanks 🤩

[SueJohnson in reply to Delilah162]

It is Oxycodone + naloxone. But you really want buprenorphine as it lasts 24 hours and targinact only lasts 4 to 6 hours so can cause mini withdrawals if not taken that often.

[Delilah162 in reply to SueJohnson]

Thank you Sue you’re a star 🌟 I’ve just taken 15 mg of codeine fingers crossed I get some benefit. 👍

[Beechie2014 in reply to LotteM]

I am so so sorry someone prescribed the devil drug!! I took it for 4 days and had severe rls for about a week....even when standing and walking!! I am in Yorkshire and my neurologist has been fantastic ( Royal hallamshire Sheffield). I take 2 mg of clonazepam and 2mg of roprinole. Finally after 20 years I have minimal symptoms. I know it is a very controversial topic but I would highly recommend you making a private appointment if at all it's doable for you, it is well worth every penny. Before then try putting cold wet towels on Yr legs, worked for me. Good luck ♥️

[Jess123dog in reply to Beechie2014]

Hi I also live in Yorkshire, but North Yorkshire, are you able to give your Neurologists name as I may look into getting a private appointment.

[Beechie2014 in reply to Jess123dog]

I saw a different one privately who liased with neurology and my gp. I saw Dr Newby at Sheffield hallam and she was really knowledgeable. It's horrid that we often don't get listened to or even believed, it seems like an unwinnable battle. This site has also kept me a tiny bit sane in the early hours when non sufferers are all sleeping! Good luck

[Jess123dog in reply to Beechie2014]

Thanks so much

[SueJohnson in reply to Beechie2014]

I assume she is helping you come off the ropinirole, and it was the GP who put you on 12 mg?

Are you planning on completely coming off it and switching to the now first line treatment of gabapentin or pregabalin?

[Beechie2014 in reply to SueJohnson]

Nope I weaned myself down to 2 or 4 if I have a crisis month. I didn't find the reduction a bad as I expected tbh, I already take pregaballin which may have helped though eh. I would like to be free of roprinerole but I don't see it happening any time soon. It was my Gp who gave me an endless supply of the devil drug, it may have been more cost effective than a neuro consult

[SueJohnson in reply to Beechie2014]

That's great that you did it yourself! Give yourself a break for awhile but do continue. One easy way to almost not notice it is to get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[DesertOasis]

Delilah, congrats on getting off the DA. Are you also off the HRT? Are you only taking the iron once a day, before bed, and on an empty stomach? Most people seem to need around 50mg of codeine. Start with 25mg at night, then add another, if RLS is still acting up.

[Delilah162 in reply to DesertOasis]

Thank you, it’s hard as I feel ropey most of the time but once I realised what they do I knew I needed to get off them asap! No I’m staying on my HRT my flailing about was awful way before HRT and I couldn’t cope with all them symptoms thrown in the mix too! I take iron in the morning on an empty stomach and one at night. Dr has said my iron is fine as my haemoglobin is 14.8 yet my ferritin is 62 she’s wondering why an infusion has been mentioned! Shot me now!! 🤷‍♀️🤣😂

[DesertOasis in reply to Delilah162]

You said the RLS “ramped up in the last five years.” Just as the SSRI made your RLS worse, so is the HRT, period, end of story. You were only on the DA for a year. You would likely be sleeping right now but for the HRT. Good luck my friend.

[SueJohnson in reply to Delilah162]

It is useless to take iron twice a day as when you take it hepciden is released preventing you from absorbing any more iron for 24 hours and you are better off taking it at night. Are you taking a heme iron as I recommended?

That's great that you are going to book a private appointment with Dr Jose Thomas. He will prescribe an iron infusion and buprenorphine.

[Delilah162 in reply to SueJohnson]

Ah righto thanks Sue, I mentioned heme iron to the dr and she said to stick with fumerate and make sure I’m eating red meat and leafy greens! I gave up in the end as she clearly wasn’t interested.

I’ve emailed Spire this evening to see what availability he has. I need to check my practice will prescribe what he suggests though. There’s only one practice where I live I would have to approach the health board to see if I can go out of my catchment up a different practice apparently.

[SueJohnson in reply to Delilah162]

You might want to check Amazon to see if they carry Iron Repair Simply which is heme iron and take 3 of them while you wait to see Dr Thomas.

[Delilah162 in reply to SueJohnson]

Thank you Sue I’ll have a look and see if I can see any 😊

[Delilah162 in reply to SueJohnson]

Can I ask do you take Buprenorphine?

[SueJohnson in reply to Delilah162]

No. My RLS is controlled by gabapentin.

[Delilah162 in reply to SueJohnson]

Ah right ok 👍 😊

[Retiredlady in reply to Delilah162]

I have only been taking .2mg Buprenorphine for a week now…it is miraculous!!!!

[Delilah162 in reply to Retiredlady]

Oh I’m so jealous!!! I want some 🥰 so pleased for you.

[Delilah162]

SSRI??? I’m not on any. I’ve only been on HRT for a year 🤷‍♀️😅

[DesertOasis in reply to Delilah162]

I know you stopped Venalfaxine at some point before coming on here per your first post.

[Delilah162 in reply to DesertOasis]

I did yes you’re right but my rls and plmd were bad before I started that tbf.

[Madlegs1]

Another doctor right out of the Ark!🤕😎

[Delilah162 in reply to Madlegs1]

It’s so frustrating!! 😡

[DogBella]

I sympathize with you. I spent a year being desperate with very little sleep. Perhaps if you could find a sleep doctor which is how I received help to begin with my RLS. I am allergic to codeine and most opioid. I finally get relief from buprenorphine. Don't give up hope.

[Delilah162 in reply to DogBella]

Aww thank you, I’m going to check with my practice that they will prescribe buprenorphine if a specialist prescribes it and if so get booked in. I’m glad you’ve found relief from it. A good few people on here have said how life changing it is! I really want to try it now. Thanks for sharing 😊

[Kiram]

hi, I take codeine for my RLS, so at 5:00 pm I take 30mg along with 2 paracetamols , then at 9:00pm I take 60mg codine plus 2 paracetamol, unfortunately I do wake around 01:30 then I take another 30mg with paracetamol, this has been prescribed to me my a Parkinson’s specialist , it’s not great but seems to. Be the best that’s offered to us in UK, I hope this helps ,

[Delilah162 in reply to Kiram]

A thank you for your reply. I’m pleased you find it useful. The dr had only given me 28 15 mg I think. I’m picking them up this afternoon. I’ve decided I’m definitely going private now to see Dr Thomas in Cardiff. If I could get the buprenorphine and it worked like it does everyone else I would be made up! 😊

[Kiram in reply to Delilah162]

Good luck , I hope it works for you

[Delilah162 in reply to Kiram]

Thanks a lot 😊

[Jess123dog in reply to Kiram]

Hi Kiram, hello do you have Parkinson's also? I am also in UK, have RLS and also Parkinson' s. Just curious if you are on Parkinson's meds? Currently mine (Madopar) 'control' my RLS but I want to be prepared so that I do not end up on something that makes things worse. I am hoping to be able to go straight to buprenorphine if at all possible even though I understand that is going to be difficult. I am prepared to go private if necessary. I live in North Yorkshire.

[Kiram in reply to Jess123dog]

No I don’t have Parkinson’s , my GP, referred me to this specialist as I was asking for meds that was off licence, and specialist can prescribe, unfortunately they still wouldn’t prescribe but are trying me with different meds , I came of pramipexole some time ago x

[Jess123dog in reply to Kiram]

Thanks Kiram

[Eagleslover]

I take one about an hour before bedtime and seems to help .

[Bowie4eva]

I too have begun codeine, take 30 or 60mg at bedtime (I have RLS badly during daytime too, but not too badly at immediate bedtime), then another 30 or 60 in the middle of the night. I also take Pregabalin, but am trying to slowly wean myself off because of weight gain and decreasing efficacy.

Much better nights since Codeine, I think because it knocks me out rather than because it stops the RLS! But it is much better than nothing.

Seeing an NHS specialist in October and may try again to persuade them to recommend Buprenorphine, not easy here in the UK! Good to have the private details. Thanks again to Joolz, Sue and everyone.

Good wishes, Delilah!! X

[Delilah162 in reply to Bowie4eva]

Aww I’m glad you find some relief, I’m hoping when I pick them up later I can at least get a few hours sleep even.

It’s so bad the NHS can’t just help us!!!

I wish you luck too for October! Xx

[Bowie4eva]

Thanks Delilah, it does seem ludicrous, fingers crossed for the future!! All the best x

[restlessinlondon]

I started codeine a few months ago and find it much better than DAs or Gabapentine as I can think again! The doctor has put me on 60mg a night which seem to be holding it well. I still get some symptoms but it's manageable . Hope you can find the right dose for you.

[Delilah162 in reply to restlessinlondon]

I’ve just picked it up now so will take some tonight. I’ve got 28 x 15mg tablets. Fingers crossed it helps, I need some Kip!

[restlessinlondon in reply to Delilah162]

We all know just how you feel!

[Delilah162 in reply to restlessinlondon]

I know the support and community is great. As the gen pop just don’t get it all!! 😊