Opioids for RLS- some useful information

[ChrisColumbus]

Having put this in a recent Reply I thought that I'd add a Post to highlight the information from three key sources which may help members in discussion with a doctor:

1. "Where first line treatments have failed due to adverse effects or augmentation, low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored. The Massachusetts General Hospital Opioid Study shows that long term, low dose opioids used in RLS do not lead to an increase in dose over long periods of time. See National RLS Opioid Registry: massgeneral.org/rls-registry

Opioids should not be withheld due to fear of tolerance or dependence as they can result in complete resolution of refractory RLS and improved quality of life.

in the UK, Oxycodone is licensed for RLS, but codeine, tramadol and buprenorphine can be prescribed off licence. Most general Practitioners may be reluctant to prescribe opioids without the supervision of a neurologist.

Tramadol is the only opioid that can cause augmentation and worsening of symptoms should be monitored.

Common side effects of nausea, skin itching, sweating and anxiety should be monitored and treated accordingly"

FROM: rls-uk.org/medical-treatments

2. "Opioids are highly effective in the management of refractory RLS, reducing daytime tiredness and improving sleep and quality of life, and thus should not be withheld from appropriately screened patients because of a fear of potential development of tolerance or dependence.

When opioids are used appropriately for RLS, escalation of dose is uncommon, and misuse is infrequent in the absence of a history of substance abuse"

FROM:

mayoclinicproceedings.org/a...

SEE: Table 4 - Suggested Doses for Opioids in Restless Legs Syndrome

mayoclinicproceedings.org/a...

3. "Low-dose opioid medications continue to adequately control symptoms of refractory RLS over 2 years of follow-up in most of the participants."

FROM:

neurology.org/doi/10.1212/W...

[Kaarina Administrator]

Thankyou. It is now a Pinned Post.

[SueJohnson]

Great idea and will be very helpful for those who need to convince their doctors to prescribe an opioid!

[Jelbea]

Well done. I have printed out your info to be able to show to my GP who is really very against me being on buprenorphine and not really very nice about it. I have tried to tell him your information but he just stops me and will not listen. Next time I shall wave this in front of him. I am getting almost no RLS and at 81 years of age after suffering all my life this is great.

[ChrisColumbus in reply to Jelbea]

Good luck with your doctor: I had a real fight with mine over coming off statins, but of course in the end they couldn't have stopped me and they prescribed something else. Its more difficult when you just need them to prescribe something that they don't want to prescribe largely because of their (and society's) perception of "the opioid crisis". The fact that properly used and controlled LOW DOSE opioids rarely lead to addiction, misuse and abuse is key. Best wishes (and Merry Christmas!)

[Elaniemarie in reply to Jelbea]

Wow, how very encouraging that is, well done you!

[Madlegs1]

Fantastic resource.

Will be very helpful to many on this site.👍

[Johan10]

Thank Chris. Very helpful. Happy Christmas to you

[Jumpey]

Cheers for the consolidation.x

[Danni54]

. Hi Chris and all. I hope you all had a Happy Christmas and I really hope that we will all get some relief from this horrible ' syndrome ' !! Thank you for your post Chris . After quite a long battle and with the help of the Specialist Nurse at our Pain Clinic, I have been prescribed 10 micrograms of Buprenorphine patches to see whether that will help the RLS which has been getting worse and worse. My blood test's showed low Folic Acid as well as the low Ferritin so I'm now taking everything I can to try to get some sleep! Mind you the Pain Clinic owes me as they were the one's who misdiagnosed my lung cancer for 15 month's. I am so lucky to still be here but because of other mistakes by our hospital , I have been left with multiple health problems.

I don't know what I would have done without people on this site and other forum's on Health Unlocked. You have all been there for me and I'm so grateful. I , so , hope that you all have a peaceful New Year but I had better warn you that I will, probably, be back!

Love,

Danni x

[Kell1977]

I have been prescribed 30mg a day of codeine. I have been taking it for 2 years with no addiction concerns. It has changed my life. I've gone from miserable in the evenings to being able to sit and relax and enjoy a film. I'm also on high dose of iron supplements I take 3 x 300mg every other day as my GP said it absorbs better. Am I better to take this in the eve ?

[RiversW]

Hi Chis, I have been taking two tablets of codeine #4 before bed for at least 20 years and have yet to find myself down a dark alley late at night trying to score more. My experience with doctors in regards to opioids has generally been good. However, I did see a neurologist once who told me during my initial appointment, "we have to get you off that codeine." And though my arms were jumping during the visit she said, "you can't have RLS symptoms in your arm." I did not see her again.

Codeine helped me for years by allowing me to sit still and do my job. But when I started augmenting on Neupro, codeine gave me no relief.

I have to admit I have struggled with the guilt and stigma associated with taking opioids but frankly really did not have a choice.

Thank you for sharing this information.

[ChrisColumbus]

This may be of interest:

relacshealth.com/blog/10-of...

[GaryMcCollom1]

Thats the study I shared with my doctor and I now take a 20mg controlled release at night but still in the process of tapering off the nasty Mirapex.

I had stopped cold turkey last September but dumbass here had no plan for my legs") Incidentally I think I figured out that Mirapex are causing my joint pains.

When I stopped cold turkey it was for 4 days and on the 3rd morning I woke up and my hands felt like I was 25 again but on the 4th day I had what I think were some DAWS issues which I learned after. Glad that I did try cold turkey.

I was on a fairly low dose of Mirapex 2 x 0.25mg but I was taking no chances re>DAWS

I figured people followed the doctors tapering instructions so I avoided that and went my own way.

I went from 2 down to 1 1/2 and did that for a month and then went down to 1 pill and did that for a month and currently down to half a pill and alternating days or taking a 1/2 then none then a 1/2 and will do this for another month.

2 years ago I stopped my kidney medication which was crestor and losartan and have not looked back, plus my numbers are improving and can't wait to see what they look like this summer.

I am relying on a high vitamin d level, average of 100ng and copious other vitamins, nutrients and minerals that have all been researched since covid.

Might add as well that myself and my wife and 2 adult boys are unvaxxed and we all have had covid once in April 2021.

Since that time my wife and I have yet to even catch a cold, true story.

[AzraCG in reply to GaryMcCollom1]

Interestingly I too haven't had a cold since covidEven though it gave me so many other ailments

[GaryMcCollom1]

Another thing to add, I mentioned my kidney disease that I had and I am certain I figured out that it was PPI that caused it, well doing some research the other day I came across a study that claimed RLS has also been caused by these nasty PPI's.

academic.oup.com/sleep/arti...

[ChrisColumbus in reply to GaryMcCollom1]

Most Proton Pump Inhibitors worsen RLS for many: Omeprazole, Lansoprazole, Pantoprazole, Rabeprazole, Esomeprazole...

[ChrisColumbus in reply to GaryMcCollom1]

As do many other meds: see the list MEDICATIONS TO AVOID halfway down this page:

rls-uk.org/medical-treatments

[GaryMcCollom1]

"Minerals and Vitamins

Other than for iron, there is no evidence that supplemental minerals or vitamins relieve idiopathic RLS. Specifically, there is no evidence to support magnesium supplementation.59 A single controlled trial suggested benefit of vitamin C and vitamin E in uremic RLS patients.60"

Big pharma will NEVER EVER do proper studies involving vitamins NEVER.

[ChrisColumbus in reply to GaryMcCollom1]

Magnesium studies that ARE done are generally on too small a cohort and using too small doses to be effective.

[ziggypiggy]

Beautiful compilation. The only part I see missing is the large amount of anecdotal reports showing low dose opiods inducing insomnia and sleep onset issues in users.

[radzome]

I have been prescribed oxycontin 20mg twice a day and 5mg shortec twice a day for different medical codition, but if i fail totake either of them, rls returns

[Jgou]

I’ve been on opioids for a lot of years now for RLS before going on them I had been on every medication that’s mentioned on here with no joy. Problems I have faced is the hospital prescribed mine but the gp is always trying to take them away. So if I could give any advice it would be try and get your hospital doctor to prescribe so you can argue with the gp, that they didn’t prescribe them the hospital did so they have no right to try and get you of them.

Within a day of going on opioids for me the difference was life changing. It controls the pain it doesn’t get rid of it all together but the diffrence for me was life changing. My jerking was really bad in my arms an legs embarrassing I stopped seeing people and going out it was that bad. the giddy pain as I call it I used to get before my limbs started jerking disappeared, that was my warning the giddy pain for the jerking to start. There must be a connection in the brain because with no giddy pain I don’t get the jerking and it is definitely the opioids that stops it. If I take my patch of to change on a night, and I have forget to replace with a new one, which I sometimes do as get brain fog, the giddy pain starts followed by the jerking this is my reminder I have forgot to put new patch on and the jerking starts within hours. As soon as I put patch on within hours it stops.

If they took me of opioids they would have to give me a wheel chair that’s the difference they make to me. So if you can get them which I know isn’t easy, I would advise anybody to give them a go.

[soupersuzy]

Hello ChrisColumbus

I just came across your post regarding medication that can cause RLS and wondered if you could advise me. I've been taking both Lanzoprazole and Atorvastatin for several years now and both are on your list. If I stop the Lanzoprazole for more than a few days I start to get heartburn and other intestinal symptoms. I had a TIA a few years ago and that makes me nervous about giving up statins. I would be very appreciative of any alternatives that you could recommend in order to be able to give both up. Many thanks

[funnyfennel]

Thank you so much for all that information. I am nowseeing a neurologist and he has been wanting me to describe the feeling of R.L.S. I could say it was like pain. I.

Will write another post on my own experience and things to discuss. (Since changing phones I lost the contact with this group, But now i'm back thankfully.)x

[Angelcat1]

opioids work for me I have had RLS for 26 year I take oxycodone for pain but found it also works for my RLS

[LondonGir]

Thank you for Pinning this post, I have now given a copy to my GP

[ChrisColumbus in reply to LondonGir]

Unfortunately, as you'll have discovered, few UK doctors or neurologists know much if anything about RLS, and rely on outdated information from NICE and the NHS.

You've previously had great advice and support from SueJohnson and Joolsg, and I hope that your doctor will take note of what they have advised and of this info on low dose opioids. Let us know how you get on!