Ropinerole withdrawal, oxycodone, & LDN

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Madmom02
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Location: My heart lives in the mountains

Ropinerole withdrawal, oxycodone, & LDN

Postby Madmom02 » Fri Dec 16, 2016 8:36 pm

Typed out a carefully written post and it got eaten so trying again:

Saw brilliant sleep doctor on Wednesday - she totally gets RLS! Tapering me off .75mg ropinerole by .25mg a week. Started taper Wednesday night. RLS is skyrocketing. Managing with oxycodone.

I want to use the smallest amount of oxycodone I can because I've been prescribed Low Dose Naltrexone (LDN) for my back pain. I have to be off any opiates for at least two days before I can start the LDN.

The compounding pharmacist said the LDN could help the RLS. The sleep clinic doctor hasn't had experience with it. I know someone (Hollande?) on this board tried it to no effect. I want to try it because it could help with the MS, too. The sleep doc said she would prescribe pregabalin if the LDN doesn't help the RLS and oxycodone or methadone (in conjunction with Pain Mgmt) if the LDN isn't effective for the back pain.

Questions: If the RLS has already intensified so much that 5mg oxycodone is giving minimal relief should I just go cold turkey? I know it might be hellish but would it be a faster hell? How long would the intensified RLS period last?

Hoping quiet legs for everyone!
MadMom

stjohnh
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Location: Palo Alto, California

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby stjohnh » Fri Dec 16, 2016 9:18 pm

Madmom02 wrote:Typed out a carefully written post and it got eaten so trying again: ...
:oops:
The compounding pharmacist said the LDN could help the RLS. The sleep clinic doctor hasn't had experience with it. I know someone (Hollande?) on this board tried it to no effect....


MadMom, yep I've had a bunch of posts disappear during writing. I now write a couple of sentences, then hit "submit" then the editing button to continue writing. No more lost work!!

And yes, I did try LDN without noticable benefit.
Blessings,
Holland

Madmom02
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Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby Madmom02 » Fri Dec 16, 2016 10:19 pm

Holland, how long were you on the LDN and what was your dose? Thank you for the suggestion about how to keep stuff out of the ether. I just figured it was someone's way of telling me to Get. To. The. Point. :)

legsbestill
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Location: Dublin Ireland

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby legsbestill » Fri Dec 16, 2016 11:24 pm

    b
I just figured it was someone's way of telling me to Get. To. The. Point.

Mad mom, you crack me up! I thought it was just me who worried about long-windedness.

Really glad you found a rls doctor you are happy with - you deserve that much after all you've been through. I don't know about going cold turkey. My consultant had me taper down and was quite frown-y when I tapered more rapidly than she recommended but I'm not sure how much she is to be relied on.

Either way, I would be surprised if 5mg of Oxy would be sufficient for the initial awful period. Most people say it lasts between 10 and 14 days and my experience suggested that 30mg of OxyContin would be required to deal with symptoms during this phase. Unfortunately this level of dose will likely cause some dependency.

My heart bleeds for you and anyone who has to go through the torture of coming off DAs after augmenting. It is so worth it though. My symptoms continued to improve consistently for months after I eliminated mirapexin.

Madmom02
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Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby Madmom02 » Fri Dec 16, 2016 11:45 pm

I'm so glad I can deliver a little laughter to someone! :lol:

legsbestill
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Location: Dublin Ireland

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby legsbestill » Fri Dec 16, 2016 11:50 pm

Btw madmom, when I came off the DAs I did not actually use an opioid - I just suffered through it - so it is possible to do it without the oxycontin - and that way you could start the LDN. I did it that way because my consultant didn't give me any option. If I had to do it again, knowing as I now do that opioids are often used to help with the transition, I would find it hard not to take the opioids. But either I would take the opioids at a good strength to muffle the symptoms to a bearable degree or I wouldn't bother with them at all.

yawny
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Re: Ropinerole withdrawal, oxycodone, & LDN

Postby yawny » Sat Dec 17, 2016 12:08 am

Madmom02, I've lost so many posts too! I never realized the universe was trying to tell me something...maybe a box of chocolates or flowers would be more effective?

I've tried LDN too. I was on it for a little over 3 months this year and did not notice any improvement in my RLS/PLMS. At the time, my other medications were Medical Marijuana and Xanax, and tons of supplements. I came off of it in an attempt to start over from scratch and add in one thing at a time because I didn't know what was negatively affecting me. But the thing is, I think LDN is a miracle drug and I still believe in it. In fact, I plan to try it again. I did a lot of research on it. Even if it doesn't help my RLS, I want to be on it because the literature shows it to be an incredible help/preventer of autoimmune disease. Dr Chris Kresser (https://chriskresser.com/low-dose-naltr ... e-disease/) suggests staying on it for at least 3 months. Apparently some people respond to LDN quickly while others take awhile. I tried various dosages from 1-3 mg and found that 1.5mg didn't disrupt my sleep. My husband is on it for helping with his Hashimoto's Disease and is getting better. We get our prescription by mail order through Skips Pharmacy in Florida (http://www.skipspharmacy.com) because they're known to be the gold standard for LDN prescriptions.

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby Madmom02 » Sat Dec 17, 2016 2:30 am

Grrr. The universe now owes me a a lot more than chocolate and flowers 'cause another post vanished.

Legs,
I agree on the "all or nothing". I asked the sleep do tor about doing a total reset - drop the ropinirole, oxycodone, and clonazepam. She said "one thing at a time." And, if this afternoon/evening is any indication of what I'm facing in tapering the ropinirole, I'll be calling to increase the oxycodone dose on Monday. The RLS is hitting hard every half hour or so and even walking is bringing minimal relief.

Yawny,
Thanks for sharing your LDN experience. I'm thinking I need to do some more research because waiting three months for relief sounds terrible. If the universe delivers flowers or chocolate to me, you can have it all because "frown-y" :D .

Oh, universe, quiet and still legs for all tonight and stop eating my posts! The current weather is proof that you're way more long winded than any of us on this board will ever be.

MadMom (where the wind is currently gusting at 25mph)

ViewsAskew
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Re: Ropinerole withdrawal, oxycodone, & LDN

Postby ViewsAskew » Sat Dec 17, 2016 12:57 pm

I seem to recall that dr. B told me LDN would not help us. That said, I seem to recall somebody for whom it worked. The search function might help you. In terms of getting through this, both approaches work. Neither are fun. Cold turkey may be faster; opiods will be easier. I imagine you will need a much higher dose, though
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
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Re: Ropinerole withdrawal, oxycodone, & LDN

Postby QyX » Sat Dec 17, 2016 10:26 pm

Cold turkey from "just" 5 mg Oxycodone is possible. In Germany 5 mg Oxycodone is the smallest available dose. You could split it to 2,5 mg of Oxycodone or switch from Oxycodone to a lower potent opioid / opiate like Morphine. 5 mg Oxycodone is 10 mg Morphine or Codeine. 5 mg Oxycodone is 100 mg of Codeine or 50 mg of Dihydrocodeine.

It really would surprise me if LDN improves RLS symptoms. It is the complete opposite of Oxycodone / Morphine etc.

In general it really surprises me why U.S. Doctors (or is it because of patients requests???) care so much about resetting and reducing opioids to start and try some other drug again and then again go back to the opioids ... and then again try something different, fail, Oxycodone again and repeat ...

Only a small number of patients seem to be stable on a opioid and then it is most likely Methadone. (Nothing against Methadone. I think it is a great drug for RLS, probably the most powerful and "best" when you can manage the side effects, please don't misunderstand me)

It is a general impression I developed over the years.

What I would want as a patient is a) the same drugs every day like an opioid and then a 2nd or maybe 3rd drug to counteract the alerting effects of the opioids or b) some rotation I can follow for a couple of years.

But all these experiments and trying and trying and trying just to keep the opioids away while the patient has no quality of life! This just makes me sad.

The RLS is hitting hard every half hour or so and even walking is bringing minimal relief.


This screams for opioids!!!

I am 31 and take around 210 mg of Morphine (average dose, sometimes mixed with Oxycodone, and 60 of the 210 are 8 mg of Hydromorphone in a 24 hour extended release pill). I know it sounds much and everybody would most likely fear it will go up in the future.

But here is the backround: I was already up at 500 mg and was able to split the dose in just one week and then reduce it further to 150 mg Morphine total daily. Now it is 210 and because I have holidays I am reducing again to avoid long term tolerance.

From the beginning it looked like I needed a bit more. When I started Oxycodone with 27, never had any opioids before except for surgery when I was like 5 years and some Codeine when I was 9 and 12 because of severe coughing, I had like zero tolerance and already needed 80 mg ... that's 160 of Morphie ... so after all my dose hasn't changed much and I was able to reduce it when I stopped drugs who were worsening my RLS.

So in my opinion: if you really want stability it is normal that your opioid dosage will go up to a certain point and if you take DAs longterm together with opioids they will most likely worsen your RLS and cause unnormal high opioid doses.

I know about the current situation in the U.S. regarding opioids but isn't there some right to at least get the most economic treatment available? Morphine is a very cheap drug and experiment with all this other drugs, not being able to work etc. will harm the society a lot.

When I read that the Doctor worries that 10 mg of Oxycodone is to much I don't know what to think. For my doctor it was normal that my dose will go up in the first 3-4 months until - for the first time - I was free of symptoms for around 90% of a day. What we aim for is the best possible outcome and prescribing some cheap opioid pills is way more cheaper then expensive treatment in hospital, surgery or not being able to work.

In Germany insurance doesn't pay for the possible treatment but they pay for the most reasonable under the economic circumstances. That gives the Doctors a lot of leeway and results in many ways in the best possible treatment available.

Sorry for my long statement. I hope the opioid situation will improve for RLS patients soon!

Madmom02
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Re: Ropinerole withdrawal, oxycodone, & LDN

Postby Madmom02 » Sun Dec 18, 2016 1:45 am

Ann, thanks for the info about Dr. B. I just spent about three hours researching LDN and, not only do I think it would make the RLS worse, I have little confidence that it'll help my pain fast enough. And, despite being told there were no side effects, I waded through posts of people experiencing insomnia, hair loss, nightmares, and stomach problems. Many people said it also caused heart palpitations - I'm thinking my history of tachycardia, which has not completely resolved despite my discontinuing nortriptyline, should be a red flag. So, I'm going to pass on the LDN.

QxY, thanks for your comments about the US opiate fear. It is ridiculous - it's government officials who are not medical professionals over-reacting. Tobacco & alcohol cause more deaths each year in the US than legally prescribed opiates yet they are legal. (I can dig up cites for that stat anyone wants them). I think I'm really lucky that I found the sleep doctor I did. I'll be calling her on Monday.

Thanks again, everyone!

ViewsAskew
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Re: Ropinerole withdrawal, oxycodone, & LDN

Postby ViewsAskew » Tue Dec 20, 2016 6:41 am

Sounds like a wise decision to pass!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Ropinerole withdrawal, oxycodone, & LDN

Postby badnights » Thu Jan 26, 2017 11:08 am

Hey Madmom! I'm back after a long absence- during which my father died and I've been trying to help my mother who is scared silly because she's losing her ability to fill out forms and find her way in once-familiar places - anyway - I'm back and I saw your Dec 16 post in the other topic, and it made me very happy to think you finally had a knowledgeable doctor on your side!

Then I read in this topic about her suggestion that you try LDN and I thought - what is she trying to do to that poor woman? There is no evidence that LDN will help. As far as I can tell, the (unproven) theory is that if the opioid receptors are blocked (it's an opioid anTAgonist, the opposite of what we know works, as Qyx has said) then supposedly it will stimulate the body to produce more of its own endorphins. Well gee. I would hate to be the guinea pig for that theory, especially for RLS not just back pain, especially after what you've been going through.

I hope you have time to post soon and let us know what's been happening with you! I hope your life is so great now that you have much better things to do than post here! (hoping!!)
Beth - Wishing you all restful sleep tonight
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby Madmom02 » Thu Jan 26, 2017 5:32 pm

Beth,
I am sorry for the loss of your dad. I hope your memories bring you some comfort. ((Hugs)). It's a hard thing to lose a parent.

That's scary about your mom, too. You're having a rough time. It's very kind of you to be checking in on us.

The sleep dr prescribed 10mg oxycodone three times daily as needed with the instructions to take it to to prevent the onset of the RLS. I either built a tolerance really fast or the RLS has suddenly gotten a lot worse for whatever reason.

I get about 3-4 hours of relief but now need the full 10mg. And it doesn't cover the whole day. It makes me sleepy but not enough that I actually sleep unless I take .5mg clonazepam. She gave me an rx for ambien but all that did was make me anxious. I'm actually working on an email for her.

Sending hugs across the interwebz.

legsbestill
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Location: Dublin Ireland

Re: Ropinerole withdrawal, oxycodone, & LDN

Postby legsbestill » Thu Jan 26, 2017 11:27 pm

Beth, so sorry to hear of your loss and also your mother's difficulties. You have been so helpful to many on this site, I'm sure you have been a great comfort to your mother. Thinking of you and hoping you are coping.


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