Codeine : I'm interested to hear of... - Restless Legs Syn...

Restless Legs Syndrome

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Codeine

9 Replies

I'm interested to hear of people's experience with codeine. Has it worked for you? How much do you take?

I realise there are superior opioids out there for RLS but I'm unable to tolerate them. I've taken paracetamol/codeine preparations (panadeine forte) in the past for headaches etc and have had no problem with it.

My intention is to reduce Lyrica (currently 300mg) by supplementing with codeine.

Thanks in advance.

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9 Replies

I use codeine (between 15 and 30mg) for breakthrough symptoms and it works fine. I'd say I need it about 2 or 3 days a month. It's not my main treatment though. I don't like the side effects of opioids and they cause central sleep apnoea in me.

wairoa36 profile image
wairoa36 in reply to involuntarydancer

Codeine was the first narcotic I tried and it had no effect whatsoever. I cannot exactly remember the dose I was given but seem to think it was 30- 45 mg at bedtime. After that I was given MS Contin, also with no relief. Finally a specialist , on my request, ordered Methadone 15 mg ( 10 mg first) and finally after months of sleeplessness, I had , and still have , a blessed 5 hours of sleep per night. I am so thankful for it.I learned about it here on this site.

It is not a knock out pill by any means but I can rest in my bed when not sleeping for some of those wakeful hours, which was not the case before.The RLS is less frantic and although I still do some pacing and exercising , it is easier to cope with.

As with all narcotics and their relatives, there is the annoying side effect of constipation but it can certainly be fairly easily managed.

I wish everyone a Good Night!

Mahia36 or Wairoa36

I tried Codeine, max dose 30mg as single treatment. I had previously been on Pregabalin 150mg which stopped working. I didn’t really find Codeine consistently helpful and it certainly didn’t do any more than take the edge of it. I have a feeling, though not proved, that Pregabalin also may have made my RLS worse in the long term & more treatment resistant. I tried it another time after an interval of a few years & it didn’t work well & just got side effects at 75mg.

Renaul profile image
Renaul

I use codeine every day. I have to play about with the doses to keep it working. I usually get about 2 hours relief no matter how much I take.

My dosage varies between 15mg codeine, 15mg plus 2 paracetamol to 30 mg plus 2 paracetamol.

Sometimes I take 15mg every 2 hours.

I'm exhausted thinking of asking my GP about a trial of Temgesic

LotteM profile image
LotteM

I asked my gp for codeine when tramadol, that I took to help me get off ropinerole and afterwards stopped working and higher doses of it had unpleasant side effects. She refused on te basis that codeine isn't a strong painkiller and that it is better to take a low dose of a stronger painkiller (which minimises the chance of side effects) than a much higher dose of a weak painkiller. I was then prescribed Targinact (oxycodone slow release combined with naloxon).

Incidentally, here in The Netherlands you can't buy codeine (combined with paracetamol) over the counter, it is always a prescription med.

Jumpey profile image
Jumpey

I used 30mg of codeine successfully for several years until it stopped working and I switched to tramadol. It doesn't eliminate symptoms 100% at this dose but gave me effective relief.

in reply to Jumpey

How many a day if I may ask? I'm taking 2 pills of 30mg co-codamol everyday for 3 months now, but am worried about long term side effects, although I'm totally fine. Are you experiencing long term effects?

Hey Amrob,

I started taking codeine about 4 years ago for a worsening of M.E/Fibro pain. Then, with a worsening of RLS simultaneously, I found codeine was the ONLY thing that would make the RLS manageable. I was on 3-4 doses each day, so a fair whack. Now on 4 doses and it's barely taking the edge off. It seemed to quite suddenly stop working. I could have just got used to it, of course, but it was so rapid I wonder if actually some other medication tweak caused the huge surge of RLS symptoms and now it's not doing a thing.

Tramadol makes my BP soar, and I am reluctantly looking into other opioids. I know it's not ideal, I know there's evidence it doesn't work or even makes some cases worse. But I'm a firm believer (these days) that if it works for the individual and makes your life bearable, don't worry. We worry all the time. ALL the time. Every thing comes with a bunch of 'what ifs and could its and might its'. Our condition - normally in amongst a bunch of other conditions - is tough enough, and if your RLS is severe and affecting your well-being, do what is right for you. Lyrica, for example, for me is dreadful. Clonazapine, prescribed to me for RLS, leaves me smashing up the kitchen and screaming at everything. But these drugs can be wonderful for others.

So I'd say for me codeine was, for a good while, a god send for a good few of the conditions I had. Then saved me from the worst of RLS for a decent amount of time.

Hope this helps, and the best of luck with whatever you decide.

banjololapoppy profile image
banjololapoppy

No painkiller worked for me except Palexia ( opiate).

Lyrica was also unsuccessful and I now use a Neupro patch which for the most part works very well.

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