opioid not working at all

[Allatonce]

Hi,

I’m after some advice after years of Ropinirole use I have recently changed to Shortec 5mg Oxycodone.

I have slowly increased the amount to the maximum recommended of 20mg per night which I take an hour before bed.

Two months in I have never been so exhausted, I’m regularly falling asleep from 5pm onwards.

This could be at the dinner table , I’m afraid to drive in the evenings due to the tiredness.

How is anyone else’s experiences with this medication?

I’m disappointed as I’ve read lots of positive results of people using opioids.

Thank you.

[bumblebee_tuna]

By not working you mean RLS is still there, or the bad side effects (tiredness)?

[Allatonce in reply to bumblebee_tuna]

Hi

No it’s not stopping my limb movement, still arms and legs moving in my sleep

[Marlayna67]

yes I take 5 mg oxy three times a day. My life has become a long tired day where I’m fighting to accomplish things. Just so tired all the time. Never ever feel rested anymore.

[Allatonce in reply to Marlayna67]

Hi

Have you spoken to your doctor about this and have they come up with a solution?

[Marlayna67 in reply to Allatonce]

I meet with him in October, thankfully.

[Joolsg]

Can you clarify. Is the Oxycodone stopping all RLS? Are you sleeping 7 or 8 hours at night?The advice will be different, depending on the answer.

[Allatonce in reply to Joolsg]

Hi

No it’s not stopping my limb movement, still arms and legs moving.

Sleeping 6-7 hours per night

Thanks

[Joolsg in reply to Allatonce]

Oxycodone is short acting, only lasting 3 or 4 hours. As it's not stopping your PLMD, you need to follow Madlegs' previous advice and switch to Oxycontin twice or four times a day to avoid mini opioid withdrawals.

I was on pregabalin and Oxycontin for 5 years and still had severe RLS.

You may find the switch to Oxycontin 5mg four times a day makes a difference. If not, you may have to switch to an opioid with a longer half life, such as Buprenorphine or methadone.

[Allatonce in reply to Joolsg]

Ok

Thanks for your quick response

[Jukebox55]

Yes! Me too! I have come off pramipexole, iron levels are good and the restless legs have resolved!!!!! But still not sleeping so tried pregabalin, which threw me off a cliff, horrible side effects. So following sdvice on here, talked my gp into letting me have oxicodone. She gave me 5mg to start. No help. Upped it to 10mg and been taking it for four weeks. As i said to my partner, on arriving at our beautiful holiday destination…. I JUST FEEL DOG TIRED. I DONT WANT TO DO ANYTHING. I am not sleeping well so it is clearly not working … i am now wondering if it is working against me instead of for me. So this morning decided to come off them, over my holiday of two weeks and see how i get on. I have also started taking HRT which I was never offered 30 years ago when all this kicked off. I am now 68 and had an early menopause. I know hrt can affect rls but as i seem now to be free of rls, this could be the answer!! We live in hope!!!

[Marlayna67 in reply to Jukebox55]

This is great news!

[Allatonce]

just got my ferritin level back it’s - 139.3

[SueJohnson]

Have you recently stopped ropinirole?

[Allatonce in reply to SueJohnson]

Hi Sue it’s around 4 months since I stopped taking it, so hopefully well out of my system.

How I feel now I’d happily go back on it

[Joolsg in reply to Allatonce]

Don't be tempted. That very intense, all over RLS would quickly come back.Definitely try Oxycontin 4 times a day. If it doesn't help within 6 weeks, see your doctor and ask to switch to Buprenorphine or methadone. The long half life covers RLS.

Your tiredness seems to be due to PLMD preventing you sleeping properly rather than a side effect of the med.

[bumblebee_tuna in reply to Allatonce]

It sounds like you suffer from augmentation and low dose opioids are not effective. I don't have any experience with augmentation, but possibly it improves with time? You might just have to wait it out.