Oxycodone: Dear friends, I have to... - Restless Legs Syn...

Restless Legs Syndrome

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Oxycodone

Simkin profile image
33 Replies

Dear friends, I have to share with you that for the first time in simply YEARS I have been able to relax on the flights to the States to see our son & wife and even better I have enjoyed one month away with them with NO RLS. I simply can't believe it.A HUGE thank you to Sue, Joolsg and others who persuaded me to brave opioids and Joolsg I even managed that daily glass of holiday wine with no ill effect!

Now my doctor, as the oxycodone has proved successful, wants me to start reducing my gabapentin gradually (by 100mg every two weeks) so we will see . I agree with him that it is a good idea but I hope it doesn't disrupt things.

As you know I am at present on 1,800mg gabapentin alongside the new 10mg daily oxycodone.

I truly am so grateful and wow so much better to get your experienced advice alongside help from the medical profession.

Thank you and especially Joolsg & Sue.

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Simkin
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33 Replies
Madlegs1 profile image
Madlegs1

How are you taking the oxy?

Is it a 5 at 12 hour intervals or one 10 in the evening.

This will have a bearing on how to go with the Gabapentin.

Great news that you have got relief.

Simkin profile image
Simkin in reply to Madlegs1

I take one 10mg tablet every night before bed.

Madlegs1 profile image
Madlegs1 in reply to Simkin

As I've already pointed out, you are laying yourself open to I'll effects when the night dose wears off.

If you are not getting withdrawals during the day ,then you are very fortunate.

Good luck.

Divii profile image
Divii

kudos to your resilience, enjoy life!

Simkin profile image
Simkin in reply to Divii

Thank you.

Allyp69 profile image
Allyp69

Pleased you have relief at last from RLS...my only question is..what will the side effects be from taking oxycodein? But in our 70s we just want to be free of RLS...

Allyp69 profile image
Allyp69

Sorry..oxycodone....

Simkin profile image
Simkin in reply to Allyp69

You've said it!!

Olivebranch1 profile image
Olivebranch1

Hello I’m 48 living with RLS since I was 11 years of age I have been free from this exhausting illness for the last 10 years, I started taking iron supplement, quinine, and essential oils lavender and balance . But every year. I would get hit with a bad attack! Lasting about a month. Oxycodone was the only instant relief. But I would fight it every night as long as I could before I would take a pill. I am assuming because I would get lazy with my vitamins is why rls would attack?’ Problem with this drug is you will need a higher dose the more you take it then possibly be addicted ! Be careful! A old friend I had was up to 30 pills a day! Try the supplements but be religious on them and you will be off the oxycodone . And be free of rls . Note never ever take sleeping pills or night time liquids etc. Theywill kick the rls to the max! Basically anything that relaxes your body, invites RLS!

Allyp69 profile image
Allyp69 in reply to Olivebranch1

Really..that's interesting...I always think that my RLS is worse if I'm stressed.

Madlegs1 profile image
Madlegs1 in reply to Olivebranch1

Oxycodone will only lead to addiction if you are addictive personality. At the low doses prescribed for RLS, there should be no danger of addiction.

I have been on 25mg a day for about 8 years with no ill effects.

Simkin profile image
Simkin in reply to Madlegs1

Thank you Madlegs. That is a very positive & helpful comment.

Simo7 profile image
Simo7 in reply to Madlegs1

Oxycodone/OxyContin is HIGHLY addictive regardless of wether you have an addictive personality?! Google - Sackler family -they’re paying $6 billion dollars for the harm they’ve caused, people they’ve killed!! Please chose a different opioid to help you. I don’t judge wanting to have some relief but do some more research before you take this.

Madlegs1 profile image
Madlegs1 in reply to Simo7

You are correct about the misselling of Oxycontin by the Sackler et al.But that was based on the fact that Oxycontin did not perform as touted.

Ie-- it was advertised to last for 12 hours. It patently did not do that for many people. Purdue persuaded doctors to increase the dose ,rather than admit to it not working as advertised.

So doctors increased the dosage repeatedly, driving patients to addiction.

The FDA were negligent in not withdrawing support for Oxycontin immediately.

However-- Purdue were in cahoots with FDA.

My original statement to which you replied, still stands.

You need to do a bit of unbiased research.

Keep well!

Simkin profile image
Simkin in reply to Olivebranch1

I don't think my doctor will allow me to go over 10mg oxycodone.

Joolsg profile image
Joolsg in reply to Olivebranch1

That isn't the case with RLS. Look at the Massachussetts Opioid study. RLS patent on opioids stay on the same low dose for decades.Those taking it for pain relief are in a different situation.

pennygates profile image
pennygates in reply to Olivebranch1

Hi Olivebranch 1You don't need more oxycodone to control rls as time goes on, as there is no augmentation. That is reported in the Mayo Algorithm, and is one of the benefits of oxycodone in treating RLS.

As Madlegs 1 has said, it will only lead to addiction if you have an addictive tendency.

Simkin profile image
Simkin in reply to pennygates

That is good to hear for me.....Simkins

Bieler profile image
Bieler

May I suggest a better alternative?

TRAMADOL IS A GODSEND and a much lower class of narcotic albeit a synthetic one. I’ve taken it for 10 years and have actually DECREASED the dose myself. 100 mg doses 4x a day reduced to 50 mg 4x per day. I did this myself without my Dr knowing just because I wanted to see if I could still be RLS free and not on max dose. Turns out I can. 200 mg per day as opposed to 400 works better because I’m not sleepy.

I stumbled upon tramadol on this forum after suffering with RLS my whole life. I’m 67.

It is a shit drug for regular pain but makes RLS disappear for some reason. People took it for a bad back or such. The back pain was still there but not the RLS. To me, after taking everything else including heavy narcotics (which helped but was severely addicted) tramodal is the only way to go. Best to you.

Simkin profile image
Simkin in reply to Bieler

I have not tried tramadol yet.

Joolsg profile image
Joolsg in reply to Bieler

Tramadol is the only opioid to cause augmentation, especially when the patient has previously been on Dopamine Agonists.

Bieler profile image
Bieler in reply to Joolsg

I lowered my dose with no ill effects. As a matter of fact, I’m better off. I was on norco and vicodin. Severely addicted. Took more, not less, for years.

I’ve suffered with RLS my whole life. Never had relief like this. After a 2 day bout which kept me in bed with severe leg and arm pain, I read on a forum (I think it was drugs.com) that tramadol was a miracle people stumbled on.

I knew my husband had some that he never took and I dragged myself into the bathroom and took 100 mg.

Within 45 minutes, I FELT NORMAL. no pain, not tired and dead to the world.

Called my Dr the next morning and she gladly prescribed me tramadol knowing full well my history with norco and vicodin.

While it’s off label, she knew the misery I’ve been going through and is very proud that I lowered the dose myself as she initially put me on the max dose.

I am beyond grateful that this works and I have no side effects and it doesn’t make me high or jonesing for more. Been on 200 mg pee day for about 6 years. Prior to that was in 400 mg. Why not give it a try?

Joolsg profile image
Joolsg in reply to Bieler

I did. After augmentation on Ropinirole. It didn't work for me. It was clearly causing increase in RLS symptoms.Tramadol does work for many people but they need to know it's the only opioid that can also cause a worsening of RLS. So if RLS symptoms ever come back, just be aware.

I am also completely RLS free. I take low dose Buprenorphine.

Bieler profile image
Bieler in reply to Joolsg

So glad you’re RLS free. What works for some may not work for others.

I too was RLS free on suboxone after a severe norco addiction.

Started on 20 mg if subs, if you can believe that. (Had a major addiction for a long time) and ended with the 2 mg strips cutting them in 4ths to finally get off on .5. Wish I could have stayed on that because it worked. After being off, I suffered for years until I ran across tramadol.

My best to you

Joolsg profile image
Joolsg in reply to Bieler

I'm glad tramadol is giving you relief.

TeddiJ profile image
TeddiJ in reply to Bieler

Interesting. I have ended up on Suboxone for rls and take a small piece of the 2 mg strip. I would much prefer a natural solution, but I am doing so much better and mostly feel like I have my life back. Sorry you had to go back to suffering again for years-that is terrible!

pennygates profile image
pennygates in reply to Bieler

Hi Bieler, It's good to know that Tramadol is so helpful with your RLS. You're right , it is a lower class of opioids.

Unfortunately it didn't work for me. I would much rather be on that. But I'm pleased to hear it has been a godsend to you. Good wishes.

Joolsg profile image
Joolsg

That's fantastic news! Delighted for you.I suggest you keep a detailed diary. Often, 2 meds at low dose are better at controlling RLS than 1 med at a higher dose.

Keep a diary and if RLS plays up as you reduce gabapentin, tell your GP and stay on the dose that controlled it.

Dr Buchfuhrer often talks about 2 meds being useful.

Simkin profile image
Simkin in reply to Joolsg

Thanks so much Joolsg. A good suggestion. I will let you know how I get on once starting to reduce gabapentin.

SueJohnson profile image
SueJohnson

That's great. So pleased for you.

Simkin profile image
Simkin in reply to SueJohnson

Thanks so much Sue.

TeddiJ profile image
TeddiJ

Fantastic news!

Simkin profile image
Simkin in reply to TeddiJ

Thanks.

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