oxycontin

[DNoda]

Hi fellow RLS fighters,

I’ve been on several meds (pramipexole and Pregabaline) and after a few weeks or months I experience tolerance to the meds, the same with cannabis. Now on extended release oxycodone. The symptoms were first perfectly controlled by just half of the 0,5 mg pill which I later gradually increased as slowly as possible. After 4 weeks I am on 10 mg which I feel is not so effective any more. I’ve heard you need to find the right dose, but it feels more like tolerance again. It doesn’t feel right to keep increasing the dose as it only makes it more complicated, or is that normal? I have to add that I’m 37, further healthy and fit with young kids and a demanding job so I would like to be very careful as statistically I have a lot more years to go. I will certainly talk to my neurologist, but would like to have a big picture. A very big thanks to all that can advise.

[SueJohnson]

The average effective dose according to the Mayo Clinic Updated Algorithm on RLS is 10 to 30 mg. Even though it says extended release it doesn't last as long as the manufacturer says and wears off after 4 to 6 hours causing mini withdrawals so you need to take it then.

[DNoda in reply to SueJohnson]

Thanks Sue! The effective dose was already half of 5 mg, but the problem is that I have to increase it every couple of weeks. So I was curious if anyone has it too and how people deal with it. The withdrawals are not a problem for the time being. Oxy works pretty well the whole night.

[4inthemorning]

I take between 10mg and then another 5 mg oxycodone if needed in the early morning hours. You do not want to take more and more over time as it becomes less effective. The one thing that oddly works really well for me is to do the yoga position ‘legs up the wall’ aka Viparita Karani for 5-10 mins instead of doing additional meds in the middle of your sleep. This position has the benefits of making me sleepy and makes the restless leg flareup stop altogether. Again works for me, obviously everybody on this forum have all kinds of different things that work for them. I’ve also come to the conclusion that for me stress absolutely makes my RLS worse. I can see a direct a direct correlation now.

[DNoda in reply to 4inthemorning]

Thank you dear! How long have you used that dose already? Have you needed to increase it so far?

[4inthemorning in reply to DNoda]

I was on a dopamine agonist, called ropinirole for many many years, and that turned into the disaster of significant augmentation, last February I finally got off that and started with oxycodone under guidance from Johns Hopkins RLS group. So I’ve been on it almost a year and I can tell you there were times when I thought I needed to take more because the symptoms were bad, but holding off and trying other things was the best course. So I have not increased from the original dosage. That yoga position and really focusing on reducing stress and how to handle stress in my life I feel is a big part of keeping my symptoms minimum with oxycodone at that dosage.

[DNoda in reply to 4inthemorning]

Thank you very much for sharing!