Hi All,
Jools, Sue and everyone do you know how much Oxycodone is safe to take?
I was prescribed 5mg did nothing.
Neurologist letter adviced G.P to go to 10 mg Oxycodine with 5mg Naloxcone.
G.P said he’s only prepared to prescribe 10 mg Oxycodone and he can’t prescribe Naloxone as it not allowed on their prescribing list.
The 10’s help a tiny bit, I’m going to contact Neurologist on Monday but should I take 15mg tonight and see if that helps? I just want some sleep 😴
Thanks 🤩
According to the Mayo Algorithm the usual effective dose is 10 to 30 mg and it needs to be taken every 4 to 6 hours to avoid mini withdrawals so you can certainly go up to 15 mg. Print out the portion of the Mayo Algorithm that shows this to show to your doctor.
Thanks Sue it’s the slow release one they’ve prescribed. I took 10mg at 7pm and still moving so will top up soon with another 5mg.
They say the slow release one will last 12 hours but they only last the same 4 to 6 hours
Ah that makes sense!! Thank you ☺️
The Naloxone is to prevent constipation.
Targinact is Oxycontin with naloxone and is more expensive to NHS. Plain Oxycontin works exactly the same.nice.org.uk/advice/esnm67/c...
Here is UK NICE guidance on Targinact. It CLEARLY states average dose is 20mg a day and 60mg is maximum.
Tell your neurologist he needs to follow UK guidance and direct the GP to prescribe the average dose at least!
Why are they refusing to read the guidance and follow it?? It's just unacceptable and negligent.
Please complain in writing. We have to push back.
Targinact is not in their prescribing list. However brupronorphine and methadone are so they might be an option if the Oxycodone don’t work.
The Neurologist did ask would I consider methadone and I said yes of course it helps. Think he was advised to try the oxycodone first.
Oxycodone can help, but at the right dose. Madlegs does well on around 25mg Oxycodone.So ask for the average dose and try it for 2 months. If it doesn't help, then you can try the longer half life opioids.
Ah that’s good to know 😊
Maybe an increase in dose will do the trick. I’m happy to try that as I’m not having any side effects as yet.
Just wanted to share my experience with oxycodone. Your experience may differ… I started with 5mg Oxycodone along with 1400mg gabapentin.
This combination did not work well for about 3 weeks. My doctor recommended I give it some time before he would titrate the dose up. After 3 weeks my RLS symptoms subsided and it was not necessary to increase the dose.
So, perhaps you might want to give your receptors a chance to adapt to the drug. According to my RLS doctor, the less pharmaceuticals one takes the better.
Finally, you may want to have yourself checked for obstructive sleep apnea. In my case OSA is a contributing factor to RLS. Checking for OSA is now trivial and there are disposable sensors doctors can prescribe where they can check for OSA from the comfort of your home.
Good luck!
Thank you for that. I don’t take anything other than the oxycodone and iron for rls. I halved a mother tablet last night and topped up and that seemed to do the trick!! 😀I’ve actually had some sleep.
I had a sleep study at the hospital a few weeks ago but I was awake moving about all night. If I was sleeping better maybe they would redo one.
There’s a new disposable device out which will accurately provide your doctor data to diagnose OSA. The device connects to your phone via Bluetooth and uses your phone to transmit the data to your doctor. You wear a sensor on your finger and another sensor on your chest which listens for snoring and chest movements.
You can do this from the comfort of your home ! No need to spend the night in a sleep clinic!
I'm surprised he won't give you Naloxone as I take Targinact which is a combination of Oxycodone & Naloxone to counter the constipation, but it doesn't. My neurologist told me that 10 Mg is a low start and much higher doses are allowed.
Exactly Joe!Targinact is much more expensive than the plain version of Oxycontin, so many UK prescribing areas will not allow Targinact.
It’s red listed in my area for prescribing. He said I might be able to get it directly from Neurologist on a hospital prescription.
curious, do you find it gives you insomnia? Just started 5mg myself and I’m having no luck sleeping. The legs are fine. Could be my reduction in Pregabalin but I’m am fairly certain it is the Targinact
Opioids cause 'alerting' and 'insomnia' in some patients. Pregabalin is then added to act as a sedative.Often 2 meds at lower doses work better than one med at higher dose.
Pregabalin should always be reducec very, very slowly.
So it's probably the Oxycontin causing insomnia and the reduction in sedating Pregabalin at the same time will make the insomnia worse.
A low dose of pregabalin ( up to 50mg) was suggested to me by Dr Mark Buchfuhrer to counter opioid panic attacks. It works well.
I then slowly reduce pregabalin to the minimum dose that covers panic. ( In my case around 6mg). You can cut the pills open and divide the powder.
I do wonder whether pregabalin as a sedating agent might work better for those who have never taken pregabalin, or only taken it for a short period of time. Having taken it for nearly a decade, and at a relatively high dose, i don't find it has an overly sedative effect and certainly not enough to counteract the insomnia i experience from opiods. For example, i can take it at 7pm and not fall asleep until midnight (and that's without taking an opioid).
Same here, I've been taking it for 12 years and I it does not sedate one iota. How do you counteract the insomnia? The only thing that has worked for me so far is taking the Targinact only once a day in the morning. No insomnia and keeps the legs calm. I don't think this will work once I am completely off Pregabalin though.
I have taken clonazepam on and off over the years, more "on" than "off" to help with insomnia. I went of clonazepam for a while recently and found that GABA supplement and L-theanine seemed to help (just a little). I'm sorry to say i don't have any real solutions, except to not take anything that causes insomnia (eg opiods) and to just wait until i get sleepy. Which isn't ideal given that i need to get up in the morning for work and the school run.
Hi, No it’s the rls that stops me sleeping as when I do nod off my movements wake me so I’ve only been having lil cat naps all night.
I take 5mg in the morning and 10mg at night. This gives me a good nights sleep. Went through pramipexole, pregabalin and Gabapentin all of which didn’t help. I’m so thankful oxycodone is helping me. Only problem is getting only one months supply at a time. I must remember to order them in time before I run out. GP has not given me any problem in prescribing them but I did have a letter from professor Walker at the National Hospital.
Ah thanks for that. I’m thinking I need some day cover as I’ve had movements from 2pm some days.
I’ve tried the other medications the only one that worked was pramipexole but I augmented on that so took last one on the 31st of August. Hopefully my dose can be tweaked 😊
Oxycontin is supposed to last 12 hours. That's why Targinact prescribing guidance say take twice a day.But many of us found it only lasted 4 hours. This was confirmed in the Dopesick drama about the Oxycontin scandal. We then get breakthrough RLS in the day/evening/night.
So you need to take it regularly through the day.
If it doesn't help after 2 months, switch to the long half life opioids. Methadone or Buprenorphine.
The 2:00 “movements” can be a symptom of withdrawal from your nighttime Oxy dose. I frequently get non stop yawning and runny nose about that time. Both are symptoms of withdrawal. I can deal with it without an afternoon dose.
Ah that’s interesting thank you. I was having daytime movements before starting the oxycodone I’m pretty much coping with them at the moment. The main thing for me it to be able to relax at night and get some sleep 😴
I use CBD capsules and THC gummies from hemp not marijuana for sleep. Both are legal in the two US States that I live in. About 1 1/2 hours after taking them I fall asleep. I wake up after about 2-4 hours, take another 2.5 of Oxycodone and fall back to sleep. I wish you well sorting out what is best for you. 🙏🏽
Hi...great to hear you've found a solution. What mg cbd/thc do u take.I've had to increase to keep it working.
Taking tramacet now,helps rls but I hardly get sleep
I take 100mg capsule of CBD and 25mg gummy of Delta 9 THC or 50mg gummy of Delta 8 THC. Wish you the best in finding what works best for you.
oxycodone
RLS / PLMD
Vimpat is working for severe RLS and PLMD 
Please advise:What should I take for RLS after getting off Pramipexole and Ropinirole?
