Adviced by a friend, I recently discovered this very interesting site and his forum ! Wish to have discovered it earlier !!!
First of all, forgive me for my poor english, I live in belgium , I speak french.
I'm 77 and suffer from RLS for more or less 35 years ....
In the begining the disease was under control with the help of usual medecines (Rivotril, Sinemet, Requip, Gabapentine....commercial names maybe differents in the USA.)
Then I switched to the famous dopaminergic agonists and after several years I reached the higher recommended level (Pramipexole 0,54 mg/night).
My symptoms increased (« augmentation ») and my nights were awfull !!! (suicide ideas sometimes), RLS refractory !!!
Recently my neurologist suggested the take (from time to time) of Oxycodone 5mg two hours before bedtime.....and it realy helps !!
My sleep is much better (even if I look like Droopy in the morning).
So I'm thinking of taking this drug every evening (against the advice of my neurologist, who fear addiction and higher doses.... , but I consider that my sleep is an absolute necessity !!!)
I read that the risks are weak for someone like me (I do not have the profile of a drug addict : I do not smoke, nor drink , no addiction on games...).
I was told about a supplement of iron too (my level is normal)
What do you think ?
Thank you in advance.
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CousinH
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There is very little chance of getting addicted at the low level you are talking about.
I am on 25 mg of Oxycontin/ Oxynorm per day for the last 8 years without any addictive desire.
The only matter to be aware of is that , generally, one needs to spread opioids evenly over the 24 hours, to avoid mini withdrawals. But you may get away with it at 5mg.
I find the iron debate tres boring-- mainly because it does nothing for me.
I’ve just been put in Oxycodone by my neurologist started on 5 mg slow release (did nothing) now on 10mg it helps a tiny bit. I’m hoping maybe the neurologist will increase it, I’m going to contact him tomorrow as I’ve been on 10 mgs for nearly 2 weeks with not much relief.
I’ve just had full iron panel done (fasting) with a view to an iron infusion but as I’ve been horrendous with coming off the pramipexole the Neurologist started me on the Oxycodone. 5 at first at night which did nothing then 10mg at night. It’s still not great last night I was still moving at half 11 so halved a 5mg and that settled me.
I’ve not experienced mini withdrawal then with the symptoms you describe.
That’s interesting about the paracetamol. So just take two of those rather than up the Oxycodone?
I split a 500mg paracetamol and take half- ie 250mg. That would be done at night, if I know I've taken a trigger such as Crunchy bar( rising agent) or alcohol or msg( soup or casserole)
Welcome to the forum. You will find lots of help, support and understanding here.
You don't say whether you are still on pramipexole so I will assume you are. Since you are suffering augmentation you need to come off it.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .125 tablet (ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to use your Oxycodone temporarily to help out with the symptoms especially as you near the end. . Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
As Madlegs said don't worry about getting addicted. But it only lasts 4 to 6 hours so if you don't take it that often you may get mini withdrawals. And 5 mg is just a starting dose.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
I don't know what your experience was with gabapentin. If you tried it while on Sinemet or Requip it wouldn't help much. If not you may not have taken enough.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
You say your iron is normal, but what was your ferritin? This is the important one and is not tested in the normal iron test. And what is normal for others is not normal for those of us with RLS.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Many thanks for your long reply Sue. I am eager (not just the legs this time to pass on your comments and valuable advice to my neurologist (who I will not meet until December unfortunately). Your explanations are very, very valuable to me. I will not fail to keep you informed.
There’s no harm in trying iron supplementation, of all the things you can try it’s the one with least side effects (usually none!). Some people find taking a supplement every night completely stops their RLS. If not then raising ferritin also helps some people.
Show your doctor the Massachussetts Opioid Register, set up by Dr John Winkelman to prove opioids for RLS do NOT cause addiction or tolerance. The 500 patients in the 6 year study have not developed addiction or tolerance.Also show him the Mayo Clinic Algorithm and the new guidance by the AASM.
RLS-UK, which runs this help forum follows the Mayo and AASM guidance.
Many of us are on low dose opioids.
I take 0.4mg Buprenorphine and have zero RLS symptoms and sleep 8 hour's every night.
After dopamine agonists, many patients do not respond to iron infusions or gabapentinoids because the dopaminergic drugs can cause permanent damage to the dopamine receptors.
Look at the RLSUK website which sets out a withdrawal schedule for dopamine agonists and an iron therapy page. All set out under Useful Resources.
Your doctor should also look at
relacs.com
The website run by Dr Andy Berkowski, a top RLS specialist who co wrote the Mayo Clinic Algorithm and the American Academy of Sleep Medicine Guidance.
Thank you to all of you. For those (like Delilah 162) for whom Oxycodone has little effect, I would like to point out that I take it currently (5mg) in addition to Pramipexole, but, as suggested, I will try to get rid of it (pramipexole)
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to pass on your comments and valuable advice to my neurologist (who I will not meet until December unfortunately). Your explanations are very, very valuable to me. I will not fail to keep you informed.
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