So I've been on Pregabalin for a year and a bit and still not slept a full night. Sometimes it's good and I can sleep for 5 hours straight, but other times...let's just say not so good! I've noticed sugar exacerbates the problem, as does spicy food and overeating. (I'm on the maximum dose of 450mg).
My doctor has agreed to let me try Codeine, and so has prescribed me 15mg tablets. My question is how do I take it? What I mean is, do I continue to take the 450mg of pregabalin, or does this need to be reduced first? When do I take it? Immediately before going to bed, or, like the pregabalin, a couple of hours before?
The doctor didn't offer any advice, and to be fair even if they had I'd still be checking with this group first.
Thanks for reading.
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BurkerKing
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They can both cause breathing difficulties so if you have that you shouldn't take them together. If not many people do take them together successfully. I do think you should ask your doctor this as s/he is aware of any other medical conditions you have. 15 mg is a low dose. If you decide to come off lyrica you will need to do it very slowly to avoid withdrawal effects although it does seem like it is helping you. As far as when to take it, codeine can be taken before bed but it is short acting and you may need it if you wake up during the night. If the lyrica gives you 5 hours sleep at first then take it when you wake up.
I am also on 450mg Pregabalin ... and to be honest, I do not find it particularly efficient in controlling my RLS. So on top of this, I also take 0.25mg Ropinirole. I have now decided to reduce the Pregabalin (I cannot see the point of taking something that does not seem to be working ...) and dose up with Co-codamol instead.
I cannot get a telephone call with Professor Walker at Queen Square until September, and cannot get a face to face appointment with him to next year.
So until then, it is back to self diagnosing and self medicating ...
I am going to suggest to Professor Walker that I try Buprenorphine .. but I have a wait of four months before I can get to that stage.
This "disorder" that we have is awful really. Sleep deprivation is one of the worst things one can have because it can be absolutely relentless.
Reduce the pregabalin very slowly, like 25 mg every couple of weeks or you will have withdrawal effects. If you do it slowly enough you will have none.
Hi I'm on the same medication the way I take is 150mg pregabalin around 14.00hrs along with 1 codeine phosphate and 300mg of pregabalin along with 2 codeine phosphate at bed time seems to work not brilliant but I'm out the dark place I once was before this combination the reason I take the meds in afternoon is to try and relax legs in the evenings hooe this helps
I am not qualified to comment on taking codeine along with pregabalin. However, my RLS is controlled very well by taking codeine. I take 30mg tablets, one at 18.30, two at 22.30. If my symptoms wake me during the night I take another one. I also sometimes take one on an afternoon if my symptoms start while I am sitting. I also take gabapentin, 300mg at 19.30 and 21.30. This regime works for me, though I realise it may not work for others.
As SueJohnson says, combining opioids and pregabalin is problematic if you have breathing issues as together they can cause respiratory depression.After augmentation on dopaminergic drugs, thousands of RLS patients have damaged dopamine receptors and do not respond well to gabapentin or pregabalin.
In those cases, the RLS is refractory and doctors should follow the Mayo Clinic Algorithm and prescribe low dose opioids.
The problem is that UK GPs and neurologists know very little about RLS, particularly refractory RLS. They refuse to accept the Mayo algorithm as it's not a UK 'trial'.
Methadone and Buprenorphine are the most effective opioids for refractory RLS, but in the UK it is almost impossible to get them because of unfounded fears of opioid 'addiction' or overdose. Buprenorphine is on the 'red list' in many prescribing areas so only a neurologist/specialist can prescribe or monitor. You could ask your GP for a 3 week monitored trial if you're in am area where it's not on the red list.
Dr Buchfuhrer has stated that 2 RLS meds at lower doses seem to work better than one med at a higher dose.
If you cannot persuade your GP to switch you to Buprenorphine, then codeine and pregabalin together might work.
However, 15mg is a very low dose. If you ask for 30mg and take an hour before bed it may well help. You can then slowly reduce the pregabalin down to 300mg, monitoring the RLS as you do so.
I wasted 5 years on pregabalin and low dose Oxycontin and believed my neurologist when he told me that 4 to 5 hour's broken sleep was the best I could expect. My fitbit sleep App shows I sleep a minimum of 8 hour's every night since I started 0.4mg of Buprenorphine. I just wish UK doctors would consider prescribing it to the thousands if RLS patients who are not responding well to gabapentin and pregabalin after years on Ropinirole or Pramipexole.
Keep pushing your GP for help and print out research papers and direct them to US help sites( links below). Hopefully, if we can persuade one GP to listen and learn more about this disease, we can start to get better treatment.
I repeat your words ... "After augmentation on dopaminergic drugs, thousands of RLS patients have damaged dopamine receptors and do not respond well to gabapentin or pregabalin. In those cases, the RLS is refractory and doctors should follow the Mayo Clinic Algorithm and prescribe low dose opioids."
Yes, unfortunately you are absolutely correct and I thank you sincerely for once again highlighting this. I obviously fall into this category (and had forgotten - so have just been increasing dosages of Pregabalin, to no avail).
I have screen shot your entire "chat" and will send to Professor Walker at Queen Square prior to my telephone appointment with him in September.
Thanks again Jools ... you and others like Sue are indefatigable in your help for others on this site, and we would be a lot worse off without all your guiding, patient help.
Sadly, most UK neurologists are still behind the top US experts. They only see a handful of RLS patients so do not realise the high rate of augmentation on dopaminergic drugs or that so many of us 'fail' pregabalin and gabapentin.Dr Buchfuhrer and Berkowski see thousands of RLS patients so they see that many of us do NOT do well.
Dr Buchfuhrer is the expert who first mentioned permanent damage to receptors and Dr Berkowski now also is of this view.
I emailed Dr Berkowski recently about drug trials for Buprenorphine and he confirmed that dopaminergic drugs cause permanent damage. He
wrote that one of his patients conmitted suicide because Pramipexole had caused damage to his dopamine receptors so badly that they could no longer experience any pleasure in ANYTHING.
Dr Berkowski is therefore very ANTI dopaminergic drugs.
In the UK, the dangers of these drugs and the extremely high rate of augmentation doesn't seem to register with neurologists.
I honestly think it's because they don't see a large enough number and they're relying on outdated NHS and NICE guidelines.
We still have a long, uphill battle to get RLS taught properly.
If only we could clone Dr Buchfuhrer and Dr Berkowski!
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