Methodone

[Dr.Placebo]

Hello Donna and others, I have read this thread with great interest since I think I may be heading into the world of long-acting opioids soon.

Your doctor sounds amazing. While no one with RLS is "lucky", you are very fortunate to have a doctor who is open-minded and willing to go to bat for you. Now you just need to find the right med or combo of meds. Good luck!

I am curious: what city is your doctor located in? Is she/he your PCP or a specialist?

BTW, I, too, have symptoms in my torso and arms ; my whole body. Yes, it is horrible to have that feeling in the core of your body.

And regarding the iron, I, too, followed the Mayo algorithm and took oral iron for 3 months, then rechecked levels and got an iron infusion about 7 weeks ago. I will finally find out my new ferritin level next week! I think I am starting to notice some improvement, possibly from the iron, in that I can sometimes nap during the day now with no twitching. So maybe after you are done with your oral iron you can get an IV iron infusion to bump your ferritin up even higher and hopefully get some benefit.

Please continue to give us follow-ups on your long-acting opioid progress.

Paul

[dallen54]

Hi Paul! I love this forum. It is so helpful to connect with others and share what we learn. That feeling in the core is - yes - harder to describe than the legs and arms and just a horrible feeling!

I'm in Eastern North Carolina and he is my PCP and is the doctor at the little local family practice. He was my husband's PCP as well and when my husband passed away he followed up to make sure I was okay and see if I needed anything for sleep or anxiety. He's always been very understanding and willing to take any information I provide. He's fairly young but is very knowledgeable and isn't too proud to do more research when needed. I'm truly blessed and keep hoping he doesn't ever go somewhere else.

I was taking 15 mg long acting oxycodone in the evening and it worked to help me sleep, and the first 3 days I had no RLS and was so excited... but the 4th day the RLS came back in the morning and throughout the day, and even though the oxy wasn't helping the RLS it still made me too tired during the day while at work.

I just started 5 mg methadone last night. I was worried about the switch and was afraid I might have a couple bad nights but it's been great! I slept better than usual last night and had very little restlessness today. I also wasn't quite as tired during the day today and I actually feel more energetic tonight compared to always feeling exhausted and depressed. I'm trying not to get my hopes up but can't help but feel hopeful at this point. It's been nearly 24 hours since I took the methadone and I have just a little restlessness but nothing like what I'd normally have by now.

I will update as to how it goes and look forward to hearing how others are doing as well.

Donna

[Polar Bear]

Donna what a wonderfully positive post. I will watch with interest and look forward to an update telling us that all is still good.

[badnights]

I was taking 15 mg long acting oxycodone in the evening and it worked to help me sleep, and the first 3 days I had no RLS and was so excited... but the 4th day the RLS came back in the morning and throughout the day, and even though the oxy wasn't helping the RLS it still made me too tired during the day while at work.

I forgot to mention this before, but it sounds like the daily mini-withdrawals I experienced when I had to raise my dose from 12 mg to 15 mg hydromorph contin. Naturally I took it all at night - that's when I needed it. But the 15 mg dose was just high enough to cause me to go into withdrawal the next day. I didn't know what was happening. I thought my WED/RLS was getting worse, but it was different because I felt kind of sick too. I was basically useless for 1-3 hours every afternoon for almost a year before I realized it was mini-withdrawal every day.

So my doctor upped my dose to 18, and I took 3 mg in the morning. It was a somewhat unsatisfactory solution, since I was taking meds to deal with med side-effects, and since it didn't complete cover it off. (Things got worse after that but then they got better but that's another story that's been told already. )

[dallen54]

Beth, thank you for this update. I had wondered if that's what was happening with me when I was taking the 10 mg hydrocodone at night and nothing during the day, and then the same with the oxycodone. I'm hoping with the methadone that since it's a long acting one I won't have that problem - probably will have a different problem, right? There doesn't seem to be any one med that will make this symptom free so our best hope is to find something that works most of the time without debilitating side effects. I read that article in Nightwalkers about the professor at ECU who's developing something for RLS that won't result in augmentation. Wouldn't that be amazing? I'm just so glad that the medical community is finally realizing this really is something they need to be looking at.
~Donna

[badnights]

I'm hoping with the methadone that since it's a long acting one I won't have that problem - probably will have a different problem, right?

You're right that you shouldn't have a daily withdrawal with the methadone , but hopefully you're wrong about the rest! You never know.

There doesn't seem to be any one med that will make this symptom free so our best hope is to find something that works most of the time without debilitating side effects.

That's truly - and sadly - the best we can hope for, it seems. We should maximize the non-medication methods that reduce symptoms, because we know the meds aren't good enough.

That said, I think the methadone should work for you, hopefully for a good long time.

[dallen54]

I'm sorry for the late reply, but I've had a lot going on and can finally get back on here and wanted to update you on the methadone. Turns out I did sleep well with the methadone and it did well for preventing the rls to act up, but I had to fight to stay awake all day and would find myself falling asleep during the day without even realizing it! You can't even safely drive with that and I'm still working full time so back to the doctor. I'm now on Xtampza ER (long acting oxycodone). At first it worked for the whole day even though it's technically a 12 hour twice a day med, but after a couple weeks I now need to either take it twice a day or fill in with something else for just a part of the other half of the day, like maybe hydrocodone that isn't extended release. Thank you for your feedback. It helps.

[ViewsAskew]

I'm sorry for the late reply, but I've had a lot going on and can finally get back on here and wanted to update you on the methadone. Turns out I did sleep well with the methadone and it did well for preventing the rls to act up, but I had to fight to stay awake all day and would find myself falling asleep during the day without even realizing it! You can't even safely drive with that and I'm still working full time so back to the doctor. I'm now on Xtampza ER (long acting oxycodone). At first it worked for the whole day even though it's technically a 12 hour twice a day med, but after a couple weeks I now need to either take it twice a day or fill in with something else for just a part of the other half of the day, like maybe hydrocodone that isn't extended release. Thank you for your feedback. It helps.

It can be hard to find something that works. One suggestion is to take a bit less than you need, so that you still have some mild symptoms, but can mostly sleep. That seems to reduce tolerance for most of us. Also, it may have worked in the beginning because you had methadone in your system - the half life is incredibly long. It takes a couple weeks to get it completely out of the system.

[dallen54]

Looking back I think I skipped something. I did try methadone and found even at a small dosage I had to fight to stay awake all day. I would find myself falling asleep at work and was worried about driving so it wasn’t for me. Still doing the extended release oxycodone for now.

Thanks everyone for your thoughts and experiences.

Donna