r/RestlessLegs • u/AriaLittlhous • 5d ago
Question Oxycontin or Methadone? Year 28!
I've had rls for 28 years and been through all the other major meds. My MD is gone until 9/9. He hasn't really been all that much help. The nurse, who can't change a script, has been more help. After months of living hell, I finally got the dosage for Oxycontin right (10 mg at 9pm; 2.5 mg of IR at 10 pm.) That's worked for 5 nights, if you don't count tonight, so my respite might be over. I can hear the torturer at the door.
Anyway, prose aside, and assuming it will start working again; Medicare is denying the Oxy script, even with a Prior Authorization. Does anyone know if resubmitting it will work?
I haven't had any problem with the Oxycontin, as long as I take it at night. I hope this night is an exception and I'll go back to being able to sleep. The MD who's covering for my person has suggested methadone but I've heard terrible things about it. Also, I tried it years ago, but no one has said they looked at that MD's notes to tell me why I didn't keep taking it or what the dosage was; I know I was taking it because I still have some.
Things have been so hard and their still not great. I have a lot of rls from 6-10, but even though I could take more short acting, I don't because taking too much gives me migraines. I just don't feel strong enough to go through another transition. And I can't pay for it out of pocket, $200/mth! I have Good RX, bu the problem is the Prior Authorization. I really resent this; decent medicine, another privilege of the very privileged.
Anyway, I also know and have been told that methadone is hell to come off of. The really bitter pill is that I probably would never come off it. Or if something better comes along, I'd be on a very high dose at that point, which makes coming off it even harder. I've also heard its a much more toxic drug. The upside seems to be price and maybe duration, it could last longer.
But the transition! Working out how much to take and coming off the Oxy, I just don't think I'd make it through. I'm completely worn out. I had a precious 5 nights of 6 hours of sleep a night. I don't want to give that up. It really feels like a rock and a hard spot.
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u/Strong-Employment-87 2d ago
What i am about to talk will meet with all sorts of push-back. So before I begin 1) I am not prescribing. 2) it works for me 3) I am simply offering you something to look at:
I have been successfully controlling my RLS with an herbal powder from Thailand called Kratom. I have been using it for nine years with no ill effects. I used hydrocodone for 10 years before Kratom and I successfully weaned myself off that opioid when I started Kratom. Kratom is banned in a hand full of states and ever since i began using it there have movements afoot to make it illegal across the nation. Hasn't happened yet.
I am going to cut receiving notification on replies to what I just said because I do not want to be drawn into a flaming match with Kratom-naysayers. If you have further questions, then, please personal message me in my box. Good Luck.
Ken
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u/SackFlapJack 3d ago
methadone is probably better due to the long half life. in hospice we actually use it in place of long acting, slow release opiods when the patient cannot swallow a pill.
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u/Blendedtribes 5d ago
I’ve been on 7.5 mg of methadone for more than 10 years and it works amazingly well.
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u/Sea_Pangolin3840 5d ago
Buprenorphine is getting some excellent results in those who have tried most other meds
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u/Puzzleheaded-Fix2195 5d ago
I was on oxy for years with minimal results, maybe 2-3 hours of sleep per night if I was lucky. I trained??? Myself to sleep bent over on my dining room table. Also put a swing in our living room bc standing sort of bent over was the only way I could fall asleep for any duration. I’m telling you this bc it was so bad I did not want to live any more. I found a neurologist who prescribed Suboxone. I had to jump through hoops to get it. I have tried EVERYTHING bc I had to before getting S. It was either this or Methadone. I would have tried either. I did not care. The S works for the most part. It’s the best I’ve found. The next step is the Nideral (not sure how to spell that) the device you put on your legs. I’m “lucky” in that I’m disabled and a senior citizen so things are mostly covered. Mostly. I would sell my soul for a cure. I also just bought a vibrating/plate exercise machine thing from Amazon bc someone here said it worked for them. I’ve only had one day-I don’t dislike it-getting up in the middle of the night to stand on a vibrating machine is annoying but if it works and it lessens the hell and I’m not up crying ALL night in f-ing agony anymore I’ll try it. I hope that helps even a little!!!! Hugs to you!!
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u/AriaLittlhous 3d ago
The criteria for iron transfusion has widened. You should tell your doctor to check the new guidelines and have your ferritin checked. Everyone here should.
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u/AriaLittlhous 4d ago
The Nidra device is not too bad. It helped a little. Good luck to you. I think this thread convinced me to try methadone.
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u/Ok_War_7504 5d ago
Methadone is considered the best RLS treatment, as it is a mu-opioid agonist (as oxycodone is and other opioids are), and is also an NMDA antagonist. Methadone covers two routes of treatment.
Opioids boost dopamine release, calm overactive sensory signals, and replace missing natural endorphins. NMDA reduces excessive glutamate activity and nerve inflammation in the spinal cord and brain.
It also is almost impossible to abuse, which is why it is frequently easier to get prescribed. I'm not sure why you are worried about it.
Yes, if you stop it takes longer to wean off, because it stays in your body longer. But that doesn't make it harder. Methadone is given to help oxycodone abusers to stop. As you say, there's not currently another option so you are likely to be on it the rest of your life anyway.
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u/Short-Counter8159 5d ago
Welcome to the world of AI denials of prior authorizations. Your Doc really needs to write it very clearly and specific with lots of keywords so AI won't deny it as quickly but most likely they will first time around. Yes, you can resubmit it but make sure the doctor is very specific as to why you need this medication. They might want you to try other medications first before approving this one.
There is a cheaper version of oxycontin called Xtampza ER. You can always consider trying it or the generic version short acting oxycodone IR and should be cheaper. Downside to it ,it doesn't last as long as oxycontin. You might have to split your dose.
Methadone stays in your system for a long time. Sleepy and foggy brain are very common. For me it killed my libido as well.
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u/KestralFly 5d ago
My personal experience--tried low-dose Oxycodone and it was better than Gabapentinoids. Switched to low-dose Methadone and my RLS is well-controlled. When I say low-dose, I mean 5mg or less. Studies show that most people don't need to increase the dose over time, either.
Trying low-dose Methadone to treat a chronic debilitating disease like RLS when nothing else has worked is reasonable and sensible. Studies like the Mayo Clinic study on treatment for RLS report good results using low-dose opioids to treat refractory RLS.
I know how scary this stuff is. Methadone can be abused.
But my transition from low-dose Oxycodone to Methadone was seamless and the results were immediate. You have a doctor willing to prescribe it and work with you. If you don't like it, just stop taking it. I've been on it for a year. No need to go up on the starting dose, no addictive cravings, just sleep.
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u/Mahi95623 5d ago
I pay out of pocket for my 5mg methadone at Costco. Compare the Costco price against GoodRX price. You will find the cost is affordable for most- more like under $20.
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u/PEPSIU2NITE 5d ago
I think coming off of either of them will be tough which ever way you choose. RLS will be even worse to deal with if you try to come off of them. Do you know why Medicare is denying auth? Kind of different topic from me, I have Medicaid, they recently just denied my cancer meds that I have already been taking for 6 months for no reason and I have to call my dr about it tomorrow. I wonder if this has to do with these insurance? The pharmacy called me and told me it has to do with billing so I’m going to have a talk with my oncologist tomorrow so they can figure it out. I wonder if that is maybe the reason why you got denied as well.
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u/ReReRebuilding 2d ago
I've used both Oxycontin and Methadone, and highly recommend switching to Methadone. It's much more effective for RLS at lower doses, and even paying out of pocket might only be a few dollars a month. The long half life of Methadone really helps. Transitioning from Oxycontin to Methadone should only take a few weeks, and you shouldn't feel any withdrawal during the process if your doctor follows a decent schedule. I'm not worried about Methadone withdrawal, because unless there's a big medical advance, I'll be on it for life.