Dihydracodiene for over 20 yrs.

[Vonnie66]

Hi all this is my first post. I have extreme rls and plm. I have it severe having started full blown with it while pregnant woth my 8 yr old. Was put in pramipexole 5 months pregnant 1 at night it took it away but less than 4 wk later it was back 10 times worse. My obstetrician doubled my dose they tried stopping it after i gave birth but not a chance. It got worse. They started me on gabapentine initially 1 a day plus the 2 pramipexole I ended up on 1200 my of gabapentin with the pramipexole a day. I got some relief for a couple of yrs then it was back. Ive been on dihydracodiene for over 20 yrs for o/a and joint injuries plus iv been diagnosed with fibromyalgia. Im also on clonazepam 1 a day and have been 4 over 20 yrs. I had my gall bladder out in dec last yr and managed to come of the gabapentin. Still take everything else though. The codeine don't touch me now having been on it so long. Atm im having a real bad time woth my fibro and rls. Dr recommended I try amitriptyline a short course to see if it helps me get some sleep. Wanted me to go back onto gabapentin which I've refused. Anyone been on codeine 60mg 3 times a day as long as me? Is there any other painkillers I can tale? As well as the codeine. I cant come of it its worse than coming of heroin. I do take paracetamol but it doesn't touch me. Thanks. Vonnie

[involuntarydancer]

Vonnie, I've heard tell of some bad cases of rls but yours sounds about as bad as it gets.

A few things jump out:

First, amitryptiline is notorious for worsening rls symptoms. I did read of one person who found it helpful many years ago but other than that 100% of sufferers find it makes the condition worse. The fact that your doctor is suggesting amitryptiline suggests that he/she does not know much about rls at all and maybe, given all your complicating factors, you should seek a referral to a more knowledgeable expert (though it can be easier said than done to find an expert with up to date knowledge of rls management).

Second, I would not expect paracetemol to have any impact on rls. It's not a treatment drug for rls at all.

Thirdly, what dose of pramipexole are you on now? This drug can be very effective at first but in most cases it ends up making the condition worse in a process known as augmentation. It may be that the bad symptoms you are experiencing at present are at least contributed to by augmentation. Many people find that when they eliminate the pramipexole their symptoms improve. However, discontinuing pramipexole is very difficult and symptoms invariably get much worse as you gradually lower the dose. It is very important not to discontinue pramipexole suddenly but rather go VERY slowly and gradually. Mostly, it is advisable to get a prescription for an opioid which will help with the increased severity of the rls while you are discontinuing. As you are already taking dihydracodeine, you would probably need something stronger.

Fourthly, when you say you are taking dihydracodeine and 60mg of codeine three times a day, surely you aren't taking both? That seems a lot. Opioids are used in the treatment of rls and can be very effective. The one that seems to be optimal is methadone and it is prescribed by rls experts in the US but generally it is very hard to persuade doctors to prescribe it, particularly in light of the current clamp down on opioid prescribing generally. However, given that you are already taking quite a high dose, it may be that you could make a case for something stronger.

Fifth, have you had your iron levels tested? It is a good idea to get a serum ferritin test done and make sure you get the actual figure - not just that you are 'normal'. Normal for rls is over 100 whereas for non-rls sufferers it can be as low as 15 or 20. Raising iron levels results in improved symptoms for many sufferers. US experts in rls now routinely treat low iron levels with an iv iron infusion.

Sixth, fibro and rls do often present together. I don't know why this would be however.

[Hidden]

Hello Vonnie, sorry to hear about your issues with RLS.

I'm amazed that ypu've been on both dihydrocodeine and pramipexoe for so long.

Dihydrocodeine because it can cause so many problems and isn't really appropriate for RLS. Pramipexole because of it's complications.

As Involuntarydancer suggests one of the causative factors in your case may be low levels of iron in your brain. This is suggested by yoyr pregnancy apparently triggering your RLS. If your iron stores were depleted during and immediately after pregnancy, they may never have recovered. In order for someone with RLS to have the same levels of iron in the brain as someone who doesn't have RLS they have to have a ferritin level of about 200ug/L.

This is irrespective of iron deficiency anaemia. Hence unless you had anaemia during or after pregnancy, I guess nonody would have considered iron deficiency to be a problem.

As Involuntarydancer (ID) suggests then a blood test for ferritin is a good idea. If your ferritin is under 75ug/L it would be helpful to stsrt taking an oral iron supplement. You could raise your ferritin to 100ug/L this way with a 50% chance of it improving your symptoms. If your ferritin is over 75ug/L, ( highly unlikely!), or it gets to 100ug/L without improvement then to rause it further e.g. to 200 or even 300ug/L, you'd need an IV iron infusion. That however, is far from routine in the UK.

It may have to be private : IV infusions apparently have about a 60% success rate and can treat RLS without any other medication. They may neef to be repeated about twice a year.

Here's a link to some information about iron therapy for RLS.

sciencedirect.com/science/a...

The other thing about such severe RLS is to identify any aggravating factors. i.e. anything making it worse.

There's conflicting information around about amitriptyline at the moment. Some doctors have apparently latched on to some evidence supporting its use for RLS. This is based on the idea that a) amitriptyline can help sleep and b) it is claimed it makes PLM worse, but not RLS.

That's OK perhaps if you have "purely" RLS or "purely" PLM, but for many, like myself who has PLM like symptoms when awake, it's not such a good idea. Also despite the evidence, many RLS sufferers say ami makes their RLS worse.

I lnow you've tried gabapentin before for your RLS, but it might be better for your fibro than amitriptyline, even if it does nothing for your RLS.

A significant part of your problem at the moment will be as ID says due to augmentation caused by pramipexole. In which case withdrawing from it will significantly improve your symptoms.

As you've obviously gained tolerance to codeine, to help you through pramipexole withdrawal and to replace it and the codeine, you will need a more potent opiate.

GPs can only really prescribe codeine or tramadol fir RLS. Tramadol may also be of little value for you.

As your RLS is "refractory" i.e. pramipexole and gabapentin have failed you should have been referred to a neurologist years ago!

A neurologist can prescribe a more potent opiate for RLS. In.particular "targinact", (oxycodone/naloxone) is licensed for RLS in the UK.

Here's a link to some information about this.

bnf.nice.org.uk/drug/oxycod...

If you follow the link provided by Madlegs1 here

healthunlocked.com/rlsuk/po...

you will find some evidence supporting the use of opioids for RLS.

[Joolsg]

You’ve been given excellent advice by involuntary dancer & Manerva. Get off the pramipexole very slowly. Codeine is the opioid most likely to lose effectiveness BUT I think you are probably experiencing augmentation which is why the RLS is worse now.

Once off pramipexole, if the codeine isn’t effective you can switch to a stronger opioid like OxyContin.

Amitriptyline worsens RLS so avoid!

Find a neurologist who knows about RLS as he/she will enable you to keep on a low dose of opioids to control the RLS.

[Gmc54]

You've come to the right place for help and support. There are some amazing people here who will try to help you all they can. Just don't try and stop anything cold turkey. I wish you well and hope you get some relief.

[DicCarlson]

Oh, that iron connection is paramount - your pregnancy triggered RLS is a key suspicion. Once you wean off the DAs and perhaps get an opioid for some RLS management - investigate the iron connection.

I am always intrigued that it is possible to "go down the wrong path" at the suggestion of pharmacology and seemingly knowledgeable doctors. Docs waved Requip (Ropinirole) at me - said it was the only solution. I intrinsically knew better and continued research led me to iron supplements to eliminate severe RLS.

[Vonnie66]

Thank u all

[58anniem]

I have been using dihydrocodine for about 6 years now - just one x 30mg a night. when it becomes less effective I stop for a bit and then it works again a few nights later. I also combine it with rotigotine patches and that combo seems to work for me. I too have fybro and cfs so I know your pain and lack of sleep etc - we live a nightmare. about a year ago I was prescribed pregabalin (which fried my brain)!and made me very depressed so very slowly I have been coming off that and now only on 25mg a night until next week when I hopefully stop. I know dihydro is my come back to as it works well for me reducing symptoms by about 40% compared to the nights I dont take it. My feritin levels were 235ug/L when last tested so not sure where to go next!............ Good luck Vonnie66 - Annie