Oxycodone and RLS

[Laila2207]

I have just started on Targiniq (oxycodone) for my terrible RLS. I'm also on pramipexole but the neurologist added Targiniq because I only sleep about 2-3 hours. I took 5 mg. Targiniq last night and got tired, but I could not go to sleep. I got a terrible headache and less sleep than I usually get. I am to take 5 mg. at night for one week and then add 5 mg. morning and night for 2 weeks. I am just wondering if anyone else has experienced insomnia on oxycodone? I don't know wether I should just quit now or if the insomnia will go away after a while.

[Hidden]

Lots experience insomnia on opiates. I did too at the beginning but like a lot of drugs most side-effects will pass in a few weeks. I would query if adding it in for sleep is the correct approach though. Adding it in to take care of RLS symptoms sure, great job, but adding an opiate for sleep only is not a good idea.

You may have to increase the drug, and I would advise looking into AUGMENTATION while you are at it.

I am on Targinact - Oxy and Naloxone and have been on for some time. The dose is significantly above that you are taking and I find it reasonably effective. I prefer opioids as they seem to work well for me with minimal side effects. Unfortunately they, as with the other types of drugs can loose their efficacy over time. I have chronic insomnia but that is with decades of RLS and pain and it occurs no matter what drugs I am taking. So on the plus side the Oxycodone is no longer causing sleep issues.

Hope that is reassuring.

[Laila2207 in reply to Hidden]

Targiniq was not added just for sleep. My legs are going crazy 24/7 and I have tried everything without any luck (Neurontin. Lyrica, adartrel, Neupro patch and more). I got some impulse disorders after years on pramipexole, so I am supposed to lower the dose when I am stable on Targiniq. I see that I expressed myself a little unclear.

[LotteM in reply to Laila2207]

Never mind, Laila. But is does make more sense now. See whether the insomnia settles. And until then juist enjoy the (relative) quietness of the legs.

[Joolsg in reply to Laila2207]

Sadly until you reduce & get off pramipexole ( and all dopamine agonists) you’ll continue to get the constant RLS. Why didn’t the neurologist mention augmentation? It’s common when you’ve tried many DAs.

Maybe once off pramipexole, you can increase the targinact and add a small dose of pregabalin for sleep.

[Highlighters in reply to Joolsg]

Could not agree with you more, pregabalin worked for me

[WMW1950 in reply to Laila2207]

I feel so sorry for those who have not found relief for there RLS. Once I got over the stigma associated with methadone I have enjoyed my new life 90% RLS free.

[oldfidgetlegs in reply to WMW1950]

Hi - interested that you take Methadone Are you in UK? I've tried unsuccessfully to get this prescribed and constantly struggling with numerous different combinations of Ropinirole/Gabapentin/Pregabalin/Amitriptyline/Codeine etc etc. The warning that 'addiction' is inevitable prompts the response 'what's so good about pain/RLS addiction' which is what it boils down to when it occurs on a relentless daily basis with no hope of getting off it!!! So glad you're getting some relief, long may it continue.

[Hidden in reply to oldfidgetlegs]

You need to look into the difference between addiction and dependence.

Why is it OK to be dependant on Insulin but not Methadone? Over the years I have been dependent on antibiotics for chest infects, dependant on asthma inhalers, dependent on Tramadol for RLS, dependent on nicotine replacement patches - as a planet we have come dependent on drugs to treat health problems AND lifestyle problems.

Why is it when someone depends on opiates to treat their pain/condition (many with Crohn's disease get codeine to slow up the bowel, ask for it when you have RLS and you might not get such a receptive audience) that there is such a problem?

The words addiction and dependence have become interchangeable but they mean two completely different things, we need to get the language right!!

To keep it brief:

Addiction is a complex condition that is manifested by compulsive substance use despite harmful consequence.

Dependence occurs when you need one or more drugs to function.

EXAMPLE:

I have pain in my spine - I am dependant on codeine to keep the symptoms under control, there is no compulsion to use the drug for any reason other than to treat the problem - with administration of the drug pain reduces and function increases the person can go about their life a little easier. Addiction does not exist.

Used correctly opiates are great drugs, used stupidly and problems will result:

There is no pain in my spine, I take codeine several times a day to feel really floaty and not worry about the mess I am making with my life. I can't really function too well unless I have a little codeine to take the edge off - Addiction is present.

[oldfidgetlegs in reply to Hidden]

A good observation and explanation - I'm arming myself with information for my GP next week and this will be most helpful when I present my case. At present I have zero quality of life, I'm at the bottom of a well with no hope of climbing out or rescue, so nothing to lose by asking. Daily severe RLS with painful osteoarthritis in hips, knees and feet, and residual pain from extensive spinal fusion should be convincing. I'll report back to the forum on the outcome - anyone taking bets?

[Hidden in reply to oldfidgetlegs]

Can I suggest Cannabis and Kratom as possible alternative treatment methods?

Cannabis is obviously a much maligned drug because of the numbers misusing it (I would argue a significant proportion of those are actually medicating themselves poorly) however it is very effective at treating a wide variety of complaints includingpain and RLS. A word of caution, research properly and obtain safely - the greatest harm with cannabis is sourcing it. You have to go to dealers or grow yourself both of which take you onto the radar of the police which can have life changing consequences.

Kratom is illegal in some places too, so if you choose this route, again - research carefully. If interested please read this thread:

I got a warning that there is identifying info whatever way I am linking that thread but google KRATOM HOLY GRAIL RLS and click on the first link, that will lead you to the HU thread on Kratom.

As with all drugs it is vital you research ANYTHING you take be it from a dude on the end of the street or the dude behind the prescription pad in the Drs office - you got to read and educate yourself.

Hope that helps

[oldfidgetlegs in reply to Hidden]

Thanks - I was just about to go the cannabis route - I know a trusted and reliable local grower - not used since the 60's (why didn't I think of that?) but haven't heard of Kratom. I'll ask around and perhaps try one at a time. Your description of the relief and simple rest it gave you was so beguiling and something only fellow sufferers could ever begin to understand. Watch this space.

[Hidden in reply to oldfidgetlegs]

Good luck with it, research all aspect carefully.

I like cannabis - I can dose pretty accurately and it works quickly. If it wasn't for the legality it would be great. Saying that I am now on medial cannabis via the project Twenty21 guys:

drugscience.org.uk/project-...

Well worth looking into.

[oldfidgetlegs in reply to Hidden]

Thanks for the Project 21 tip, I've just subscribed. I've never baked with cannabis because I'm unsure of quantities, and Delia's no help! So pleased it works well for you and you're getting some relief from RLS horror.

[Hidden in reply to oldfidgetlegs]

DO NOT BAKE CANNABIS - unless you have deoxycarbolated the herbal flower.

merryjane.com/culture/canna...

You need to dry it in an oven at around 100c DO NOT GO HIGHER. This will change the THCA to THC. Many have skipped this step and ended up with foul tasting brownies.

Next when you do cook, cook low - heat destroys cannabis. If you have hash then crumble off as normal into a little oil and warm gently on a pan. Then when you cannabis has melted into the oil throw it in a yogurt and scoff it down.

Eating cannabis makes it more potent and harder to dose so start really small. I accidentally did too much of the hash/yogurt thing and then sat to watch the Matrix. About an hour later I turned it off in terror and slunk to my bed to hide under the covers - too much cannabis is not good!

Please do not wait too long for Project Twenty21 to contact you - take the initiative as things are a bit Higgledy-piggledy with them so you need to be proactive. They are very very understanding and will no doubt sort you out.

[oldfidgetlegs in reply to Hidden]

Thanks for the heads up re baking. I remember way back eating some fruit cake a friend had made and experienced something more akin to an acid trip - very unexpected, I wondered why the sky had turned black at mid-day and a brass band was playing in the front garden. In view of your comments I'll avoid this route.

I've registered with Project 21 and will chase them up in a few days. Thanks.

[Hidden in reply to oldfidgetlegs]

Yeah a strong cannabis trip can really melt the head - I've found high doses of cannabis to be less forgiving than LSD so when eating less is always more unless you have a good tolerance.

[Highlighters in reply to oldfidgetlegs]

Why can't you get total knee or hip replacements, I have total knee replacements x2 better than knew no more pain

[Highlighters in reply to Hidden]

You are spot on with this, quality of life should provail over all

[Nanpat in reply to Hidden]

Exactly, exactly, exactly, give me something to take away the rls and I’ll stop the opiates……no addiction here!!! 😄

[moonhunt18 in reply to Hidden]

You’re on oxy and Naloxone? But Naloxone is an opioid receptor inhibitor, so that should prevent the opioids from reaching your system.

I don’t understand.

[Hidden in reply to moonhunt18]

Targinact contains both, they say the Naloxone prevents constipation.

In reality the Naloxone is (only) active if the tablet is crushed and injected thereby rendering the Oxy inactive and the person trying to abuse the drug as p1ssed off!!

It is a harm reduction mechanism masquerading as something that will negate side effects.

[Highlighters in reply to moonhunt18]

You are exactly right on this one moon, I took naloxone to give up alcohol, but first had to give up opioids because they blocked the opioid usefulness anb will creating extreme withdrawal systems

[Nanpat in reply to Hidden]

Hi, can I ask what dose you are on and if you’ve had to increase it from original dosage?I started on 10mg morning and night, worked wonders, then 10 at night only still ok off and on. Then rls worsened so 15at night, now that’s no longer working. I was under impression you can’t suffer augmentation on opioids?

[LotteM]

I second raffs. Oxycodon like other opioids often induce some insomnia. I found that taking the oxycodon some 3h before bed AND waiting to he really sleepy before actually getting to bed helped to fall asleep more easily. But you will need the long-acting aka slow release version of oxycodon, i.e.oxycontin, to ensure sufficient coverage during the night.

I also agree with raffs re the augmentation issue. If you got only 2-3h sleep on pramipexole, it has lost his effectiveness and actually may be worsening your symptoms. That is the first step on the route to augmentation. Oxycodon is good to help with that, but is less effective if you keep taking the same dose of pramipexole; you'd rather reduce it.

Get informed, and then discuss with your doctor. Don't hesitate to ask for more help, if you need it.

[Arkangel]

I am on Oxycodone hydrochloride 10mg twice a day for chronic pain and I have found that it does help with RLS. I have also reduced my Pramipaxole by a third to 0.088mg at night I take both at about 6pm. I also have a brupenorphine patch.

I never sleep more than 2 - 3 hours, but I find that preferable to the constant pain and RLS symptons throughout my body.

I do hope you find relief and sleep.

[Sampsie]

Hi Laila, I take 10-15mg of the long lasting oxycodone (Targinact) and I can struggle getting to sleep. It isn't as bad as it was to start with, and I now wait 2 or 3 hours after taking it before I try to sleep. I sometimes add in medical CBD to help with sleep. Oxycodone has been very good for stopping the RLS ( but please look into augmentation as advised).

All the best.

[puzzler1]

Hi Laila

If you find the oxycodone is not working very well for you, as an alternative you could ask your doctor for Temgesic 200mcg which is buprenorphine. I was lucky that my doctor put me on this instead of going down the gabapentin/oxycodone route (after some persuasion!) and I find it's working very well with minimal side effects. It's helping me no end while I get off pramipexole.

If you take a look at my posts and shumbah, jules1953 and hausbauer you'll get the idea.

The US Mayo Clinic will shortly publish their latest findings saying this will be their first drug of choice for treating RLS.

Hope you get some relief soon.

[Laila2207 in reply to puzzler1]

Thank you! I'll be reading all your posts and look forward to reading the Mayo Clinic findings and take them to my neurologist. I took Targiniq last night also, and have slept fairly good. I'm going to cut my pramipexole dose in half tonight and see how that will be, I really want to get off them as they may have something to do with my sleep issues.

[bedith6 in reply to puzzler1]

Hi Puzzler 1. I have been following your posts recently, including the marvellous letter you husband wrote. Would that my husband was still here to support me. I am really wanting to ask my G.P for bupenorphine but feel I need a lot of background info in black and white to support my request and am therefore anxiously awaiting the findings of the Mayo clinic. Please keep on letting us know of your progress as the information is very useful. Best wishes

[Felicity21]

Hi Laila2207, I am still on a DA (prolonged release 0.26 mg Mirapexin) but add 0.5 mg Clonazepam and 2 co-dydramole (10/500) plus Senekot (to prevent constipation). I think it is a great combination and sleep like a log. Good luck

[Hidden]

As a long-term oxycodone user (>15 years), I have experienced this myself. I also had trouble with itching, both of these annoying symptoms went away after a short time. I do not take oxycodone every day (I am also on 30 mg per day of Methadone in 3 divided doses).

I have never had any addiction issues with it (even though I am a person in recovery from alcohol and an eating disorder) as I take it as needed for breakthrough and will go several days to a week between needing it again. If it has been a long time since I used it, I will get these symptoms sometimes when I need to take the oxycodone again.

As I have stated in the past, the judicious use of opiates is one of the best symptoms relievers for RLS in my opinion as a long term sufferer. It is unrealistic to think that it completely relieves the symptoms (at least for me), but it is 95% better. I get manageable twinges of it when it is time for the next dose of methadone. I have not experienced augmentation from them and have only had to increase the dose of methadone once in 3 years (the disease increases in severity as we age) and have actually decreased the oxycodone use during this time.

There is a risk of addiction in about one out of a hundred RLS users as opposed to one out of every four to one out of every ten oxycodone users for pain. ( have read those figures before, but there is so much out there that I was unable to lay my hands on the data right at this moment.)

In short, my experience is that when I take oxycodone after a period of not taking it, I am bothered by insomnia and sometimes itching. For me, it does go away after continued use.

[Jules1953]

Oxycodone I have found very helpful when helping me to wean off Sifrol (Pramipexole)

But your prescription also has Naloxone in it.

Naloxone should not be used when treating RLS.

What is naloxone?

Naloxone hydrochloride (brand names Prenoxad, Nyxoid) is a drug that can temporarily reverse opioid overdose. It works by blocking opioid drugs, such as heroin and oxycodone, from attaching to opioid receptors in the brain.

I was prescribed Endone which is only oxycodone, and I found this effective.

[LotteM in reply to Jules1953]

Jules, oxycodone combined with naloxone jas brand name Targinact. It is actually the ONLY drug, in this combination, that has been tested for people with refractory RLS in a double-blind placebo-controlled fairly large study ( about 200 people per group). The naloxon is said to be added to prevent constipation. But Raffs has other views on it ;), that it is added to prevent its effect when used as an injectable drug. He may be quite right.