Opioids: Good morning one & all I am... - Restless Legs Syn...

Restless Legs Syndrome

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Opioids

Simkin profile image
16 Replies

Good morning one & all

I am, as you know, now on 2,100 gabapentin taken in divided doses in the evenings to no avail.

Today I spoke to my GP and to my amazement he is happy to start me on low dose oxycodone (to take at night).

Thank you so much Sue & Jools for suggesting I sent him all the articles by the Mayo Clinic, as he read those before speaking to me & I am sure that is why he is happy for me to try opioids.

He wants me to try (if oxycodone works) to gradually wean myself of gabapentin.

I think Jools said every 2 weeks have 100mg less of gabapentin?

I will let you all know how I get on. I forgot to ask if I can drink a nightly glass of red wine with opioids!!!???

Simkin

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16 Replies
SueJohnson profile image
SueJohnson

The usual recommendation is 25 mg every 2 weeks, although since you are starting from a high amount, you might try more. Just be aware of the withdrawal symptoms which can include insomnia, headache, nausea, anxiety, diarrhea, flu-like symptoms, pain, excessive sweating, dizziness, confusion, and palpitations.

Simkin profile image
Simkin in reply toSueJohnson

Nothing can be as bad as coming off pramipexole!

Simkin profile image
Simkin in reply toSueJohnson

Also the lowest dose of tablet the GP could give me were 100mg.So I will have to come off 100mg gabapentin at a time.

Usually the capsules are 300mg each so he has ordered the 100mg capsules for me.

SueJohnson profile image
SueJohnson in reply toSimkin

My bad - I was thinking of pregabalin when I said 25 mg. Yes 100 mg is the correct amount.

Simkin profile image
Simkin in reply toSueJohnson

Oh good!

ndp1978 profile image
ndp1978

hi Simkin

I have Been prescribed opioids for many years now to where I take 80mg in total per day for chronic pain.

I have also taken pregabalin as in theory it should stop or slow the pain signals along the nervous system or the GABA isn’t picked up (sorry im no scientist) but this never worked.

The only form of pain relief I get to the frustrations of the doctors is oxycodone as they don’t want to have long term opioid patients, but fact is, as I am sure you have read is that oxycodone can be used in an effected manner by a physician, pharmacy and trusted patient. The problem arrives she with all opiat users YOU WILL BUILD A TOLERANCE meaning you will have to take more of the small amount at the moment of say 10mg abs double to 20mg, unfortunately this is the major downside to long terms opiat use if you find it affective but need more of it the doctors categorise you as DEPENDENT (medical term for addicted) which then depends on you location in the world, and even then your ability to access the services you will need to stop taking oxycodone . Speak to your doctor, ask him what happens if it doesn’t work, will he increase the dose m, and how long does he plan oxy treatment, and most importantly if for whatever he required you to stop taking the medical that it will be a slow medically , physically and emotionally supported, not cold turkey as that’s when people turn to H which is now cut with fentanyl and dropping former pain patients like flies. In summery use oxy sparingly and if it has the desired effect using as Little as possible. They will posh OxyContin on you as a slow release pain medX sounds great, problem is it keeps the oxy in your blood 24/7 where as quick acting and release only last 4a6 hours most meaning if you don’t need you just stop taking it and don’t have to go through months of weaning off OxyContin experiencing withdrawals. I have my comments help as I am based in UK the only way I got OXY was privately as the GP’s on the NHS avoid it because of the scare stories in the US and cheaper to use oramorph or now ketamine for severe acute pain. But with tour condition I don’t see why a small dose of oxycodone would hurt. I presume not heart problems, etc?

Good luck

I hope you find relief soon x

Simkin profile image
Simkin in reply tondp1978

Thank you for that. I will see how I get on with oxycodone.Everything is trial & error.

I have NO pain. My problem is just rls.

Joolsg profile image
Joolsg

I'm delighted he's agreed to let you try Oxycontin.I drank alcohol while on Oxycontin and pregabalin, but try small amounts and see how you react.

Reducing gabapentin should be done very, very slowly to avoid common withdrawal symptoms.

To give you a comparison, I took over 6 months to reduce from 150mg pregabalin. I cut the 25mg capsules, divided the powder and reduced by 6.25mg every 2 weeks.

I had zero withdrawal symptoms.

You can probably reduce a little faster.

Oxycodone average dose for RLS is 30mg.

Opioids for RLS do NOT lead to tolerance or addiction, unlike when used for pain. See the Massachussetts Opioid study which confirms this.

Good luck.

Simkin profile image
Simkin in reply toJoolsg

Joolsg that is all so helpful. Thank you. Very very useful.My GP is starting me on one 5mg oxycodone at night so that really is the lowest dose.

TheDoDahMan profile image
TheDoDahMan

In the US, low-dose opioid therapy usually means low-dose (10 mg/daily) methadone insofar as tolerance build-up rarely occurs, and methadone stays in the system longer than most other opioids (see Mayo Clinic recommendations.) For some reason, the UK has yet to twig on to these benefits. I'm in my 5th year of methadone therapy and my life has been transformed thereby.

Simkin profile image
Simkin in reply toTheDoDahMan

So useful. Thank you. 5 years. That is helpful to know.My GP has put me on oxycodone 5mg to start.

I took one last night & for the first time in YEARS & YEARS I was not running round the house.

I don't want to be too excited in case it's a one off but fingers crossed.

I feel a different person this morning.

TheDoDahMan profile image
TheDoDahMan in reply toSimkin

Actually, another patient in the doc's office told me he was on methadone for 8 years without needing to increase the dosage. And yes, my VERY FIRST night on low-dose methadone therapy yielded me 8 hours of refreshing sleep. We're all pulling for you, Simkin!

Simkin profile image
Simkin in reply toTheDoDahMan

Thank you!

Lolly53 profile image
Lolly53 in reply toTheDoDahMan

Yes my experience with Methadone is the same as yours. I started at 5 mg and have only had to increase it once in 6 years. Am now on 7.5 mg. This drug dramatically improved the quality of my life! I wish I could somehow help have an impact on the medical communities we all have to deal with. Everyone deserves to get help like I did.

kmc12 profile image
kmc12 in reply toLolly53

hello

I have a chronic pain condition and have been taking 400mg of tramadol for 3 years - more recently Oramorph. I am titration of opioids due the itchy skin and night sweats / hot flashes all of which have severely impacted my At present I am titrating and taking 30 mg of amitriptyline for pain but this may go slightly higher. I have had RLS for 30 plus years and am aware of amitriptyline effect- I am managing that with magnesium salts foot soaks most nights. I also take 300 mg Gabapentin in the evening. Can you or anyone suggest how much Gabapentin I should try to be taking in the evening to help with RLS - I do have to be aware of side effects between the drugs I am taking but I hope to be completely free of opioids in 2 months . Magnesium foot soaks are the only thing that really stops my twitching in its tracks so I have been able to get some sleep

Thank you

Kath

Rlssimmbob profile image
Rlssimmbob

So many variables. Sorry cannot comment

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