I’m still searching for a neuro who prescribes opioids in NY. In the meantime, Mayo Clinic published this video. Oxycontin for RLS?

[Discopage]

does anyone here take OxyContin for RLS? According to the Mayo Clinic, it’s the primary opioid they prescribe if DAs lead to augmentation and Gabapentin and similar meds fail to work.

youtu.be/daAyvu14ics?si=OIc...(Not working as expected?)

[Madlegs1]

I have been taking Oxycontin for over 8 years. Initially it was for post op pain for spinal reconstruction, but the medics now accept it is primarily for RLS.

Initially I was prescribed 10mg X2, but they don't last the 12 hours, so I was given Oxynorm 5mg to cover the gap.

I find it works well, and only get attacks when I take a trigger such as msg, alcohol or sulphites.

I did experience initial insomnia, itching etc, but stuck with it and after 3 weeks ,it all settled.

Hope that helps!

[SueJohnson]

Jennifer Durphy [phone] Albany neurologist does telehealth but requires you see her for the 1st appointment. Does prescribe opioids.

Harini Sarva [phone] New York City neurologist. A member just got an appointment with her at the end of August. I believe she prescribes opioid, You might message UsuableThought who used her at one time and ask or call the office and ask if presribes opioids for RLS if she deems it is appropriate.

The problem with Oxycontin is that although it is supposed to last 12 hours it actually only lasts 4 to 6 hours and you have to take it that often to avoid mini withdrawals. If you are prescribed it be sure you are given enough to take them that often

I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals.

[Joolsg]

I was on 25mg Oxycontin and 150 mg pregabalin for 5 years after Ropinirole caused augmentation.I took 10mg at 9 am, 10mg at 9pm and 5mg at 1am.

My RLS was still 38/40 & I was awake 3 or 4 times a night walking off RLS.

My UK neurologist said there was nothing else and 4 hours broken sleep was the best I could expect.

I then pushed for Buprenorphine, a long half life opioid.

My RLS is now 0/40.

Oxycontin does work well for many people, but for others, it doesn't seem to cover the RLS. Probably because it has such a short half life.

It's definitely worth trying as a first opioid, but if it doesn't help within a month, the doctors should consider a switch to a long half life opioid, like methadone or Buprenorphine.

[tagaxel in reply to Joolsg]

What do you mean by 38/40 and 0/40 Joolsg?

[Joolsg in reply to tagaxel]

cks.nice.org.uk/topics/rest... is a score sheet for RLS. Mine was in the very severe category. It is now non existent. No RLS at all, day or night on Buprenorphine. I get 8 or 9 hours sleep every night.

Any doctor should first ask you to complete the IRLSS chart so they can see how severe your RLS is.

cks.nice.org.uk/topics/rest....

If you click on the link above, it shows the questions asked to establish severity of RLS.

[tagaxel in reply to Joolsg]

Thanks but they have restricted the website to people from the UK.

[Joolsg in reply to tagaxel]

Ah. Just Google IRLSS and most countries have a downloadable copy.I'm sure rls.org have it and most RLS neurologists with their own website will have it.

[Joolsg in reply to tagaxel]

drdavidcunnington.com.au/cl...

Try this site. He has a downloadable version.

[tagaxel in reply to Joolsg]

Thanks, got it!

[ChrisColumbus]

That Mayo Clinic video is based on Dr Silber et al's 2018 paper on opioid treatment and doesn't mention buprenorphine, which Joolsg , Shumbah and others have found effective.

Here is a 2024 video from Silber which, starting at 09:42, also covers methadone and buprenorphine:

youtube.com/watch?v=cANNoYe...(Not working as expected?)

And here is Dr Andy Berkowski's 2023 video on buprenorphine:

youtube.com/watch?v=nCoKMIN...(Not working as expected?)

[ChrisColumbus]

I note that you've been seeking a NY referral for at least 3 months now, and that both Sue and UsuableThought have previously had input: presumably you've tried their suggestions and still not found anyone?

[SueJohnson]

Here's another one I just got today. She follows the Mayo Algorithm. Dr. Melissa L. Bernbaum - neurologist 775 Park Ave #355, Huntington, NY [phone]). However there is a long wait time so ask to be notified if there is a cancellation.

[LanaCSR]

Shumbah gave me the name of this doctor in NY who prescribed buprenorphine for her...Glen Brooks [e-mail]. Good luck!

[LotteM in reply to LanaCSR]

Shumbah posted just 4d ago that dr Brooks is now 76 years old and doesn’t take on any new RLS patients.

[LanaCSR in reply to LotteM]

Oh, I must have missed that post! Thanks for letting me know.

[DNoda]

I am not very happy with this drug. It doesn’t cover the symptoms well and I still get breakthrough symptoms after like 2 hours. It also gives me insomnia. I also get tolerant to it and need to increase the dose. For the rest no side effects. I stay sharp in my mind and get no brain fog whatsoever. I only take it from time to time, like once a week as I don’t want to keep increasing the dose.

[ChrisColumbus in reply to DNoda]

You're referring to oxycodone? "Immediate-release formulations of oxycodone have average half-life of 3.2 hours. In other words, it takes 3.2 hours for the average person to eliminate half of the dose of oxycodone. Controlled/extended-release formulations of oxycodone have a longer half-life of about 4.5 hours to 5.6 hours, on average."And as you're aware "you may build up a tolerance to oxycodone".

[DNoda in reply to ChrisColumbus]

Yes, extended release which is supposed to last 12 hours. Do you know if you also build up tolerance to other opiods which work for RLS?

[Joolsg in reply to DNoda]

I take Buprenorphine. It has a 25 hour half life so covers all RLS symptoms and no mini opioid withdrawals like on Oxycontin.I have taken the same low dose for over 3 years now.

Tolerance doesn't tend to happen with opioids used for RLS. Dr Winkelman's opioid register was set up to prove this. The 500 participants have been taking the same low dose for the 5 years of the study, so far.

The most common opioid used by study participants is methadone.

[DNoda in reply to Joolsg]

Thanks Joolsg ! I’ve tried prami, pregaba end oxycontine so far. All work well, but I get tolerant to them all, also pregaba. Methadone/buprenorphine still need to be tested. Not looking forward to it as I am 37 and hopefully have a lot of years to go, but let’s see.

[Ert223]

I have been using 50 mg of Norco for 10 years.Plus 1 mg of klonopin...when meds quit working i hit legs with near infrared light.

650-75]

850-950

Must use large light boxes..50 watrs of power.

When narcotics quit working i can use red light box on legs..pain goes from 10 down to 0.

Also they have a supplement called kratom..

Its non addictive cannot overdose...its a reletive of the coffee plant.

Good luck

[Discopage]

I was on vacation and just got back. Read through all the replies. Thanks for the info everyone.

I called Dr Sarva and her staff said they can’t comment on which medications she prescribes for patients so it’s unclear if she will prescribe any opioids. Is UsuableThought still a member here? I tried to search for them but came up with nothing.

The other doctors Sue mentioned are far from me and since I’m reliant on public transport it’s a little tough. Dr. Durphy’s staff said in-person visits are required not only for the first visit but for every few subsequent appointments too.

From what you all said I’m more comfortable trying buprenorphine. Otherwise, I think I’ll need to go back on a low dose dopamine agonist, which is concerning. I’m on Medicare now and it doesn’t cover Neupro so I’d be looking at one of the others.

Other option is sticking with Gabapentin which isn’t really working even when supplemented with vaped cannabis, which helps but only temporarily.