I had my hospital appointment today, consultant refused the Buprenorphine, but instead has increased my codeine from 60mg per night to , 120 mg split into two doses , he wants me to take 60mg at 5pm then again at 10pm , he seems to think this will be sufficient to last me through the night , as codine build up in my system . at the moment I’m finding they only last me 3 hrs .🤦🏼♀️
Has anyone else experienced this as I’m not feeling confident it will work
If they only last you 3 hours, then take them as late as possible.
You could try potentiating it with paracetamol/ acetaminophen. That works with most opioids. About 500mg would help.
Good luck.
Thank you for your reply I take them with paracetamol at 10:00 , I’m then awake around 1:00 so take more codeine , but again awake at 3:30 , I’m having to get up at 6 for work . But is the Dr right in thinking if I take a dose at 5pm then again at 10pm that the build up will last me rest of night ? . I’m not keen on taking such a high dose at 5pm this will stop me from being able to drive and potentially any activity I wish to do in evening 😢
What is the point in taking it at 5pm if you don't need it at that time.
Save it for later in the night???
That is my thinking , but Dr says by taking them at 5pm then again at 10pm there will be enough of a build up in my system to last the night , but so far my experience is they do not build up and start to wear off after 3 to 4 hours , I did ask what I should do at 2am , and he seems to think that I’ll be fine and won’t need them at that time 🤦🏼♀️😬🤬
How about 40 mg at 10, 1:00 and 3:30? Or 60, 40, 20?
I was hoping not to get broken sleep, as it’s a struggle with getting up at 6 , I’m a domestic within the NHS, it’s a very physical job , I have a lot of family stress at the moment, which I’m struggling with , and if I could get some proper rest I’d feel I could cope much better , dr didn’t seem interested in that 😢
Hi Kiram, Is it Codeine Phosphate or Dihydrocodeine ? for me 60mg Dihydrocodeine takes about an hour to work and the effect lasts about 4/5 hours.
I found codeine phosphate wore off for me too. 🙁. I am not recommending what i take but it’s helping til i can hopefully get targinact prescribed by a neuro. So i take for now one .088mgs pramipexole and one and a half of 15mgs codeine phosphate. When i was off the pramipexole i was taken a high dose of the codeine phosphate through the night and the day and it didn’t touch my RLS. That’s saying something for me as i have a low tolerance to meds. I did try dihydrocodeine which worked but woke with panic attacks so stopped that one. Maybe that one will work better for you. ?
Thank you . Dihydrocodeine apparently is more tolerant, maybe I’ll have a chat with my GP
I would explain to your doctor that you tried his method and it didn't work and that it only lasts 3 hours for you and you need more.
As for the dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.
I agree with Madlegs. Codeine has a short half life, so I disagree with the consultant. Take the doses later AND during the night. I know you don't want broken sleep, but the RLS will wake you up anyway.One day, Buprenorphine will be first choice opioid for RLS.
We just have to train and educate specialists.
I agree with everyone else here regarding your doctor's woeful ignorance. Here's my routine: I take one 30 mg. Codeine-Tylenol #3, but only after the symptoms begin, which is typically around 3 am, but sometimes as early as 9 pm. It's not perfect, since Codeine-Tylenol takes up to an hour and a half until it kicks in. The effects of the pill only lasts about 3 hours, but if I take it a 3 am and it wears off at 6 am, it's time for me to have to get up and go to work, anyway. If my RLS begins at 9 pm, I take a pill then, and take another one if that wears off in the middle of the night. As I've said, it's not perfect, but other things I've tried (gabapentin and Tramadol) have given me awful side effects, which Codeine-Tylenol has not.
Good luck to you, and I hope you find the right meds/dosage/schedule that works for you.
I was prescribed 60 mg codeine in addition to gabapentin after augmentation. After 2 months of trying, including taking extra codeine through the night because I was only able to sleep around 1 1/2 to 2 hours at a time. I ended up taking 120 mg in addition to gabapentin and was getting very broken sleep. It was more than dr thought I should be on and I felt druggedup. Then I put together a case for methadone.
So …. Codeine did work, but not well enough. It’s 1/2 life is too short for those and and I needed too high a dose to be effective.
Whether it works for you will depend on how severe your RLS is and how many hours a day your symptoms are.
When I requested methadone, I took the sleep results from my Fitbit and also went into detail about how I struggled to get through each night and what I did to pass the time - that I couldn’t lie down for more than 5 minutes at a time and had to walk around the house alternated with having hot baths all night long. I think drs often don’t really believe us when we say we cannot sleep. They probably think we toss and turn but sleep without realising it. I don’t think they truly believe we sometimes go all night, multiple nights, without sleep!!!
Best of luck. Keep posting and let us know how you get on.
This is so true , I think I’ll start wearing my watch to bed , as I know people don’t believe me , when I say how little sleep I get , I have to go back to see Dr in 4 weeks , I can show him then . Thank you
It would seem that buprenorphine or methadone would be wonderful for you to try because of their long half-lives. I've been taking low-dose (10mg/day) methadone for six years and it has changed my life, without causing tolerance in that the dose is so low. The Mayo Clinic recommends these two meds for that very reason. Best of luck!
Thank you
If prescribed dihydrocodeine at 60 mg or stronger it should be the long acting version. Pharmacy had trouble sourcing 90 mg for me and had to have prescription rewritten to supply 60 mg + 30 mg. Had bad RL S breakthrough and then checked tablets and 30 mg of dihydrocodeine was not modified release.
Just to add to the other replies, I take 30mg of Codeine Phosphate at 14.00 (I sometimes get breakthrough symptoms on an afternoon), 30mg at 18.30, 60mg at 20.30. This usually keeps my symptoms under control. If I wake up during the night, and more than 4 hours have passed, I take another 30mg. Try different regimes to find what works best for you. Good luck!
You need extended release of some opioid to get better sleep. Oxycodone ER worked for me but had too many side effects. If you cant get Buprenorphine, Methadone is a much better choice, it gives most of a night's sleep without the high feeling from the other opioids. Have you had a sleep study done to convince them how little sleep you are getting?
No , after years of back and forth the Gp, they have finally referred me to Parkinson’s clinic 🤦🏼♀️ , but clearly they not up to date with RLS
Parkinson's neurologists are the worst for overprescription of dopamine agonists, so stand your ground and do NOT let them prescribe another dopamine agonist.
Kiram, are you on any type of HRT?
Yes I use gel but only one pump instead of two , and use early in the morning, I did discontinue it for awhile to see if it helped with RLS, but there was no difference only a drop in my mood 😢
I see. How long were you off the HRT before you went back on? Also, I would try taking 60mg of ferrous bisglycinate on an empty stomach about an hour or two before bed, on an empty stomach. If you’re like many others on here, it will completely rid you of symptoms in about 1.5 hours for one night.
I stayed off it for about 3 months , will do thank you
Fair enough! Maybe? If you did the trial of stopping HRT while on DAs, or shortly after, it’s not a fair test. I’m also wondering what drove you to the DAs in your 40s? SSRI? HRT? Some combination of the two? The good news is, HRT is neuroprotective, and as painful as it is for us with RLS, hormones, in general, help to keep our dopamine receptors in tip top shape. So you’ve done yourself nothing but good! However, if it were me (and you’re not me), I would stop the HRT, and of course start the iron. Good luck!
My RLS , got worse in my 40’s but knowing what I know now I would never had started the DA’s, and insisted on more iron , I was suffering from very heavy periods due to fibroids, for over 3 years and eventually had a full hysterectomy, I was given oral HRT, for awhile which was stopped due to high blood pressure, after several years without HRT, I started suffering too much from the affects of menopause, depression and anxiety was the main reason I agreed to try the HRT gel , while I stopped the HRT, my mood dropped so low again . It affected my work life as well as personal. I feel trapped between two evils
I’ve been reading for a long time now that iron is good for mood. medicine.umich.edu/dept/psy....
So think about playing. Meditate on it. If you start the iron and taper off the HRT see what life is like? You can ALWAYS reintroduce the HRT. No one will call you weak if you do. There’s other supplements as well as things like yoga (especially hot yoga) that are also good for mood. Become an expert in mood enhancing natural things!!!
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