Restless Legs Syndrome (RLS) Discussion Board

I am currently coming off of the Neupro Patch having been on it for about 2 1/2 years. My reasons for getting off are, Expense ( I'm in the Medicare "donut hole"), the itching at the site of the patch and I believe I have been experiencing augmentation. I have gone from 2mg down to .5mg. I am also on Oxycodone 7.5/3.25. I am having pretty rough nights managing only 2 hours sleep. I try napping during the day but can only rest for about 45 minutes before the legs start their dance. Also experiencing restlessness in my hands and arms. My question is what next? I can't take Gabapentin because of side effects. I know my Ferritin levels need checked. Is there any medication that is prescribed to deal with RLS after the DA's and Gabapentin family? I am calling my doctor in the morning. He is at a quality care center in San Diego and I'm up in northern Idaho. I would appreciate any thoughts on this, thanks.

The only thing left after iron therapy (ferritin elevation), dopamine agonists and the alpha-2-delta ligands (gabapentin/Horizant/Lyrica) are the opioids. And if you are as bad as some of us, you end up with a combination of all of these or use them in rotation. I augmented on pramipexole and then Neupro. I have been on methadone and tramadol and have recently found that by combining methadone with a small amount of pramipexole (0.125mg), I can get by with less methadone and hopefully extend the time before the side effects catch up with me again.

I would normally suggest tramadol since it is a Sch. 4 opioid instead of Sch. 2, but it is also much more expensive than the other opioids. My tramadol cost with insurance was about 2/3 of what I paid for Neupro, so that probably isn't a viable option for you right now. By comparison, methadone is dirt cheap, but the bureaucracy of actually getting it can be a major pain.

Hi, 2BassetMom. I was just thinking of you the other day when I saw that the fall in person RLS event was being cancelled.

So sorry you are having trouble. Good job reducing the patch - that is often quite helpful for when you stop.

I really appreciate the info. I'll see what Dr. Poceta suggests and go from there. The combining of meds looks like a good option. I would have loved to have gone to the fall event to see people I met in La Jolla. It's good to have faces to go with names. I'll let you know what comes of my med dilemma.

hi 2bassett! It sure sounds like augmentation.

Is there any medication that is prescribed to deal with RLS after the DA's and Gabapentin family? I am calling my doctor in the morning. He is at a quality care center in San Diego and I'm up in northern Idaho. I would appreciate any thoughts on this, thanks.

First, an iron infusion. Your doc will need iron bloodwork from you including ferritin. In my signature link, right at the top of the page is a link to download a paper on treating RLS/WED with iron. That would be a useful one for you to look over/ read parts of.

Second, opioids, perhaps in combination but I wouldn't go near a DA for a while. If the side effects you were experiencing are not present at low dose, maybe you can do a combo with gabapentin, or maybe try Lyrica instead; the side effects are not always the same.

I wish I could have seen you in person this fall! I would totally have gone (in the pre-pandemic world.)

I'm almost off the Neupro Patch. I had my Ferritin level tested last week and waiting for the results. I'll then contact my doctor to see where we go from there.

Well done on being nearly off the Neupro patch.
Regarding your Ferritin levels you know not to accept a comment that they are 'normal' etc. You want to know the exact figure.
Good luck.

I heard from my primary care doctor's office today and was told my Ferritin level is 113. I have a call into Dr. Poceta's nurse and expect to hear within a day or two. My RLS has been relentless in the last 24 hours. I didn't replace my last bit of patch. I have had maybe an hour's worth of sleep. I do hope there is something that will help after going off the Neupro Patch. I can't take the Gabapentin group because of unpleasant side effects. I'm taking 7.5/3.25 oxycodone. I'll let you know what I hear from Dr. Poceta.

I heard from my RLS doctor's nurse. She told me what I have read on here that there will be 3-4 weeks of hell coming off of a dopamine agonist. When this time is up I may need to fly down to see the doctor so they can evaluate how I am without a DA. )ne of our sons lives there and it will be great to visit them. I did cry "uncle" at about 9:00 last night and put on a half patch. I was able to get some sleep, so feel optimistic going into the trial of withdrawal. I'll be checking in.

Good luck! Seems like you are on the right track.

Glad you get to see your son .

How goes the battle, 2BassettMom?

The battle continues. I am down to using the Neupro Patch maybe once a week and that is 1/2 patch or .5mg. I only use it if I am at the breaking point. I have restless legs throughout the night and several times a day. Still on oxycodone. I will be making an appointment to fly down to see my RLS specialist in La Jolla at Scripps in September. He wants to see me to set up another plan of meds. I don't relish flying down to CA at this point but I am desperate. I have read on this forum about the use of Methadone. My doctor mentioned it briefly when I first saw him and I am wondering if he will consider it this time. I am out of options as the Gabapentins have side effects that I find intolerable. My daughter will be flying down with me and we will get to visit with her brother and his family so there are added benefits. My husband chooses to stay home and take care of our zoo of 2 dogs and 4 cats. I hope there is something that can be done as I dread the coming of night and bedtime. This is a new feeling for me so you can see RLS is wearing me down. I will report back after seeing my doctor. Also I think I mentioned my Ferritin level is 113. I use the patch as directed by my doctor as I am weaning off.

Hugs to you. Hope he has some options that work for you.

I guess he won't give you enough oxycodone to cover your symptoms? Sheesh. I hope you get some methadone and it works well for you. How can he expect you to wean off now and get methadone later, what's up with that?