Tapering off Ropinerole and have questions…

[Abby2525]

Almost eight months ago I started on Ropinerole. Quickly went from .25 to 1 mg. Felt horrible on it although it helped with the compulsion to move my legs. Had awful nausea and stomach aches and a very agitated feeling for at least the first two hours after taking it. I also couldn’t sleep more than two hours a night with it.

By the time I had been on it seven months, I just couldn’t take the lack of sleep and started taking 150 additional mg of Pregabalin (was already on 50 mg at night for fibromyalgia and I started taking some that I had leftover from when I was taking 300 mg at night for fibromyalgia).

So, my RLS specialist called in a prescription for me for 200 mg pregabalin each night and I’m trying to come off of the Ropinerole. I’m down to about 3/8 mg and the RLS symptoms start earlier in the day and are worse.

Is this due to withdrawal from ropinerole? How quickly should I decrease it now and in what increments? Are the symptoms just going to keep getting worse and, if so, for how long? Also, will the fact that I’m taking 200 mg pregabalin mean that it won’t be effective until I’m completely done with withdrawal from Ropinerole? Would it be worth it to start a higher dose of Pregabalin before I’m finished with the ropinerole?

I have gotten to the point that I’m depressed, tired, dreading each day because of the RLS. It seems like I’m living in a nightmare compounded by having gotten on a DA and now trying to stop it. I don’t know if I want to keep living like this and have to remind myself that life is still good. I’m obsessed with this and if I talk about it to anyone, I hear things like, “Just move more all day so you can use up your energy” to “you just need to meditate and stop thinking about it” to “it’s probably just the power of suggestion from a doctor telling you you have it.”

Thank you for your help!

[Abby2525]

Edit: I went down to .25 mg ropinerole for about three days and then went back to 3/8 mg last night. I had only been on .25 for less than a week after being on .5 mg for a short time (I’m so tired I’m confused about numbers of days, I think).

[SueJohnson]

Yes it is due to withdrawal from ropinirole. Wait until the symptoms settle and then reduce by half of that, again waiting until the symptoms settle. You will probably need a low dose opioid temporarily. Do not increase the pregabalin until you have been off the ropinirole for several weeks. Then you can increase it by 25 mg every couple of days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily." If you take magnesium take it at least 3 hours before the pregabalin as it ill reduce the absorption of pregabalin. Also you need to have your ferritin tested. Improving it to 100 or more helps 60% of people who have RLS.

[Abby2525 in reply to SueJohnson]

Sue, thank you so much! It’s going to take much longer to taper off the ropinerole than I had thought. I didn’t think it would be so difficult to stop as I have been on it for months rather than years and not a huge dose. But I guess my brain has already gotten used to it.

[Abby2525 in reply to SueJohnson]

Sue, what are some low-dose opioids I could take, assuming the doctor will prescribe them, that will work while I’m taking pregabalin? I ask because I had read on here about a drug that blocks the receptors that allow Pregabalin and gabapentin to work. Thank you.

[SueJohnson in reply to Abby2525]

I am not an expert on opioids but methadone, buprenorphine and tramadol are used by many on this forum.

[Abby2525 in reply to SueJohnson]

thank you