Oxycodone - the way forward or a dead end?

[etchea33]

I have only posted here briefly once but I have been following this great forum for some time.

My story is very familiar. Have had RLS for 14 years, was prescribed all the available RLS medication: Ropinirole, Pramipexole (both miraculous at the beginning) Neupro patch ( never tolerated it), Gabapentin, Pregabalin (I would fall asleep eating my dinner), and Tramadol then Codeine to help with coming off Pramipexole due to Augmentation.

With the help I found here, I eventually managed it and continued with Gabapentin (1200mg) and Codeine ( 60 mg) – daytime was mostly RLS-free but evenings and nights remained a nightmare as symptoms became more severe with time. I had reached tolerance with Codeine and I was not sure what Gabapentin was doing for me.

I resorted to Pramipexole (unwise but necessary) whenever I had to travel or needed to be still for a long period of time, and occasionally, then more and more frequently, to catch up on my sleep, because I had to admit, it was the only medication guaranteed to allow me to get on a plane or sleep for more than 2 hours. I am now on 0,180 mg most nights and I know I need to come off it for good. I started researching the stronger opioids.

I discussed possible ways forward with my neurologist, who had been quite supportive until then. She suggested alternating Codeine/ Pramipexole to try and restore sensitivity. It did not work. Nor did Mucuna ( natural dopamine). I approached the subject of opioids. It was clear that as opioids are not on the formulary of the NHS hospital where she works, she could not prescribe them - nor would she want to - But she agreed to ask my GP to prescribe Oxycodone-naloxone ( Targinact).

I started Targinact 5mg/2.5mg twice daily a week ago –straight switch from Codeine 60 mg (no problem as 5mg Oxycodone = 100mg Codeine) and reduced Pramipexole to 0,088mg. No effect the first night. Next day, severe symptoms started 2pm and continued non-stop through evening and night ( apart from 2 hours’ sleep). By the morning I was exhausted and depressed. The next morning dose had little effect, symptoms persisted, although a little less severe, until evening. By which time I was feeling quite unwell, could not face another night of torture and decided to stop Targinact. It seemed as if it was making my RL worse. I had read a lot of positive accounts of Oxycodone here and I wondered if I had done something wrong or just could not tolerate Oxycodone.

Then I looked at the posts on Oxycodone again and found out that it is only effective for 5/6 hours although taken every 12 hours, causing withdrawal symptoms in between doses. Looking back at the log I kept, it seemed to tally.

I saw my GP yesterday, explained the situation and asked if could take the same dose every 6 hours ( total daily dose 20mg/10mg) to cover the full day. She was not keen on me starting on a higher dose, but we finally agreed to trial every 8 hours ( total daily dose 15mg/7.5mg). I will start tomorrow night. Is this a good idea? I must admit I am getting quite confused now as to what to do next. I have so many questions.

Do I just not tolerate Oxycodone?

Should I have persevered beyond 2 days ?

Was 5mg/2,5mg twice daily too low a dose?

Do I need to take it 3 times / 4 time a day? I could not find in the research literature mention of the between-doses withdrawal symptoms.

Has anyone experience of starting on a higher or more frequent dose?

How long does it take for Oxycodone to kick in from ingestion?

I feel I have not given Oxycodone a proper chance , but I don’t know what I should do next.

Should I increase Gabapentin to 1800mg? It tends to make me quite unsteady.

Apologies for the length of this post. I would be so grateful for advice from you great people who have knowledge/experience of this.

Heartfelt thanks

[SueJohnson]

Yes you need to take Targinact every 6 hours. Taking 7.5mg every 8 hours will just cause more withdrawal symptoms because you are on a higher dose. It should kick in within 10 to 30 minutes.

[SueJohnson]

There is no point in increasing gabapentin because it won't work very well until you are off pramipexole.

Also going from .88 mg pramipexole to ,088 mg will cause withdrawal symptoms from that. I suggest you go back up to .88 mg and let those symptoms settle for a day or so and then reduce by .half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. Gabapentin won't be fully effective until you are off it for several weeks. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since you are on more than 600 mg take the extra 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. If you eventually decide you need more than 1200 mg, take the extra 6 hours before bedtime. but don't just jump from 1200 to 1800 mg. Increase by 100 mg every couple of days. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason .

[etchea33 in reply to SueJohnson]

Thank you very much Sue. I am on 0.18 mg of Pramipexole (base), reducing by half to 0.088 . So the withdrawal symptoms should not be too horrendous. Thanks for the advice on Gabapentin. I never know if it's helping as I have never taken it on its own.

[SueJohnson]

By the way, taking 5 mg Oxycodone 4 times a day is only 20 mg total and the Mayo Clinic Updated Algorithm on RLS says that the usual effective dose is 10 to 30 mg a day.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

I would even print out the section on opioids showing that 20 mg is not a high dose.

[etchea33 in reply to SueJohnson]

Thanks again Sue. My GP is not against me being on 20mg of oxycodone daily, just starting on this dose ( the updated algorithm gives 5-10mg as the starting dose). She feels she does not want to take a risk starting at the higher total daily dose. Hence the compromise of 3times daily ( every 8 hours),total daily dose 15mg. I am grateful to her for supporting me when the neurologist could not/ would not . What do you think? I have given her a copy of the Mayo Updated Algorithm.

[SueJohnson in reply to etchea33]

You can try it and then if you have withdrawal symptoms as you likely will, she will let you go up to 5 mg every 6 hours. Every 8 hours will certainly be better than .5 mg every 12 hours.

[SueJohnson]

Another possibility is to ask for buprenorphine as it only has to be taken once a day. The usual effective dose is .5 mg to 6 mg.

[SueJohnson]

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Joolsg]

Targinact IS an opioid, so no idea why your neurologist says she's anti opioids but then agreed to prescribe one.As Sue advises, taking it twice a day can cause mini opioid withdrawals BUT in your case, the severe RLS is caused by withdrawals from Pramipexole.

Once you're completely off Pramipexole, thd Targinact may work very well.

[etchea33 in reply to Joolsg]

Thank you Jools. I think my neurologist finally agreed to me taking an opioid ( under my GP supervision) because she had nothing more to offer me, she could see that I had read the latest research on opioids for RLS ( I gave her the Updated Algorithm) and Targinact was approved by the NHS. Getting Buprenorphine, should I need to change, is likely to be a different story.

[Joolsg in reply to etchea33]

Where are you? I've spoken to quite a few MS neurologists & most have switched to pregabalin or, if that fails, methadone or Buprenorphine. It does vary by location.

[etchea33 in reply to Joolsg]

I'm in the south west of England. I was on pregabalin for a few months but it was affecting my balance and making me very drowsy . I would fall asleep eating my dinner and dozed off at the wheel of my car once - fortunately in a line of slow moving traffic, but l left the road and hit a wall. So I take Gabapentin instead. If Oxycodone does not work, I would ne happy to go on Buprenorphine

[Joolsg in reply to etchea33]

Oh no. That's worrying. Did they prescribe it for ONLY at night or during the day as well?But Buprenorphine is an option if Targinact fails.

[etchea33 in reply to Joolsg]

I only took it at night as I do Gabapentin now.

[SueJohnson in reply to etchea33]

Ouch - you were lucky

[Madlegs1]

Exactly as Jools has pointed out.

Taking oxycodone. Oxynorm 5mg would be a perfect way to go.

I ran this past Dr Buchfuhrer a while ago and he agreed, just pointing out the difficulty of taking it every 6 hours.

I take Oxycontin 10mg , which lasts me about 9 hrs twice daily , and then take Oxynorm 5mg once. I often can push it to 7 or even 8 hours without I'll effect.

I am waiting to see my pain consultant to ask him to ok the move to Oxynorm 5mg 4 times daily. Effectively it would mean a reduction of 5mg of opioid daily.

I take nothing else for the RLS, except for magnesium citrate occasionally.

Good luck.

[etchea33 in reply to Madlegs1]

Hi Madlegs. Interesting that Oxycontin lasts you 9 hours ( rather than the 5 or 6 hours mentioned in several places). Yes , taking it every 6 hours (4 times daily) is difficult as you inevitably have to take one dose during the night / very early morning. How are you planning to take yours ? I'd be interested to hear what your pain consultant says about it.

[Madlegs1 in reply to etchea33]

I will take it whenever the previous one runs out- but never more than 4 in 24 hrs.I'm reckoning I might actually get away with 3 doses a day , (on a good stress-free day)😁

It could be a good while till I get to see the consultant- waiting list in Ireland is over a year!😤

I let ye all know how it goes.

One important note about opioids lasting ,is to remember that we all process medicines at different rates, so you need to experiment,to discover what works for you.

Good luck.

[etchea33 in reply to Madlegs1]

Yes you are quite right Madlegs. I need to find out how Targinact works for me and adapt the timing accordingly. If one dose could last 8 hours it would be great, but in my previous trial a couple of weeks ago it was only effective for about 6 hours.

[67Waterman]

Oh you poor thing.

Please ask your GP to put you on the Longtec version of Oxycodone - these are "long release" which means they work over a period of 12 hours.

Gabapentin often does not work, so also ask your GP to put you on Pregabalin. Not sure why Pregabalin works better but it does.

Because my RLS is only at night, I am on 10mg Longtec and 150mg Pregabalin just before bed every night. Despite the fact that Gabapentin and Pregabalin did not seem to help me on their own, it seems to be good practice to take a small about of Pregabalin together with the Longtec version of Oxycodone. Unless I have certain triggers, this cuts my RLS down to anything between 20% and zero.

(I am also on 150mg Trazadone nightly for menopause depression).

As an aside, I do exactly the same as you. When I have triggers and my RLS is bad, or if I have to do a plane journey or long car journey, I also resort to between 0.125mg and 0.25mg of Ropinirole - as you say, it is the only medication that (unfortunately) truly works.

Hope this helps. Don't give up hope. Do try the Longtec and Pregabalin together. As a final comment, although I only take the Longtec version Oxycodone at night, I certainly do not get any withdrawal symptoms the next morning.

[Cameronb in reply to 67Waterman]

Just about to put the exact same.. stops the high and low effects of oxycontine.Alternatively try transdermal patches.

[etchea33 in reply to 67Waterman]

Thank you very much 67 Waterman for sharing your personal experience. I take Targinact, which is prolonged release oxycodone + naloxone ( which counteracts the side effect of constipation). I believe Longtec is another brand name for extended release Oxycodone. Do you find your 10mg dose lasts for 12 hours?

Unfortunately I cannot take Pregabalin as it makes me extremely drowsy, to the point that I fall asleep fairly suddenly any time and I had a (minor) car accident while on it.

[HappyGreenBean in reply to 67Waterman]

'Longtec' apparently causes constipation for some. I was told that it's not available here in the UK under the NHS because it's too expensive and also that it causes constipation and therefore Oxycodone + Naloxone is the preferred prescription. I think frustrating for those of us that get these mini withrdrawls and suffer from being backed up.

I'm still on codeine and hoping to move to something else because it's not touching the PLMD/RLS for about 1/3 of my nights. This whole thread is very useful for info! Thanks for sharing.

[67Waterman in reply to HappyGreenBean]

Constipation is an understatement!

[HappyGreenBean in reply to 67Waterman]

hahaha! Ya, just a little!

[davchar23]

Dear etchea33,

My story is very similar to yours except I have hopefully moved on by 4 months from the date of my last use of any dopamine agonist. That was rotigotine patches but I had in the past been wrongly prescribed a range of DAs over last 3-4 years including pramipexole and ropinirole.

My journey since then and the awful time post augmentation period has included the use of pregabalin(as much as 600mg per day) and Targinact (as high as 30mg/day). A consultant neurologist recommended use of low dose opioids after 600mg day pregabalin didn't help me.

I have been guided through my "escape from augmentation" by several persons on this site especially Joolsg, Sue J and Lotte and I would advise you to do the same. I believe i have managed to "educate" my GP and changed from oxycodone/naloxone extended tablets to buprenorphine weekly patches (they worked but difficult to gauge when they had run out) and am now on 0.4mgper day buprenorphine tablets (2x200mcg tablets daily in the evening) and a gradually reducing level of pregabalin (now on only 75mg per day). Pregabalin causes me to be unbalanced and generally tired and so I hope to cut this out completely but I find I can only reduce by 25mg /day every 3/4 weeks.

I am beginning to accept that my dopamine receptors in the brain have been permanently damaged by the use of DAs and that I will always need a low dose opioid to control my RLS.

I hope my story has given you some hope even though there is no short cut to escape augmentation and I can only hope that you can bring yourself to face it asap. Please use this site as your support.

Good luck

Davchar

[etchea33 in reply to davchar23]

Dear Davchar23

Thank you so much for your helpful reply. Every little bit of information from RLS sufferers on this site helps to build a fuller picture of the condition and ways to deal with it. I cannot imagine what it would be like to be on my own and at the mercy of unknowledgeable doctors.

Pregabalin also affected my balance ( I could not walk in a straight line) and caused me to fall asleep randomly.

Presumably you changed from Targinact to Buprenorphine because Targinact did not work ? Was it difficult to get your GP/neurologist to prescribe Buprenorphine?

You seem to have done very well on your journey.

[davchar23 in reply to etchea33]

Dear etchea33,

Yes i went up to 30mg/day (6x5mg) of Targinact and the side effects for very little benefit on RLS were too severe and so with a little persuasion and help of neurologist my GP prescribed buprenorphine.

Yes according to Joolsg I am doing very well timewise when it comes to achieving some sort of success on drugs and sleeping.

Regards

Davchar

[etchea33 in reply to davchar23]

Long may it continue.

[RalphWiggam]

My own experience with Oxy was much the same as your own. It worked for around 4-5hrs and then I was back to dealing with the torment. And it made me itch severely. Methodone was the best as it had a long lasting effect. Belbuca was the difference maker for me though. Long lasting and without many of the side effects I experienced with the others (nausea and anxiety).

Wishing you much improvement.

[etchea33]

Many thanks Ralph Wiggam. It seems Buprenorphine works well for (nearly) everyone. Did you switch from Methadone to Belbuca because of side effects? It's good that you have found your solution to this life-destroying disease.