Getting off Ropinerol

[boone1805]

Trying to get off ropinerol but Drs know nothing. Read the Mayo study and found this site after I started trying to get off on my own. I was on 2mg extended release and .5mg before bed. I stopped the extended release and increased the other to 1.5mg to sleep. Went to 1.25, then 1. Haven’t slept more than 3 hours and went back up to 1.25. Slept ok for a few days and I’m back to not sleeping again. RLS starts in the afternoon and just keeps going. I read there is less chance of augmentation on the extended release. Should I go back on the 2mg ER and 5 at night and taper from there? I was not augmenting when I started trying to get off ropinerol. Any thoughts would be appreciated.

[Hidden]

You were given bad advice here. 2mg of Neupro is low and you weren’t even augmenting or having side effects. You should never go from ER to fast acting as far as I know. No one asked you how long you were on the Neupro or what other drugs you are taking that could be making your symptoms of RLS (but not the RLS itself) worse, such as anti-depressants or statins or melatonin. Why were you even prescribed a DA in the first place?

If it were me I would go back on the 2mg of Neupro and try drawing down from there. I know nothing of your background so I can’t advice how to make that final leap off the DAs. Some say large doses of Gabapentin. Others Lyrica. If you can get it some say low dose opiates. None ever sound ideal to me unless you suffer from naturally severe RLS or RLS due to co-morbid illnesses such as kidney disease or MS which will probably require life-long drug treatment.

I can advice that you fast after 7pm and until breakfast every night and take 25 to 50mg of ferrous bisglycinate every night while you draw down on the DA.

[boone1805 in reply to Hidden]

I really messed up taking this in the first place. My RLS was largely seasonal-terrible in the spring but manageable the rest of the year. I was desperate 3 years ago and a dr prescribed sleeping pills but the side effects scared me. My sister was on rooinerol for her RLs and said it worked great. I asked for this drug and was given it with no mention of it being habit forming and of augmentation. My gut says to go back in the 2mg ER and .5 and taper off the .5 and stay on the ER. Thanks for your opinion!

[SueJohnson]

Yes I would suggest you go back on the ER and then taper more slowly, such as .125 every couple of weeks or more. Stay on the nightly dose of .5 mg until you are off the ER. You will probably need a low dose opioid temporarily near the end. You are going to suffer but you will be glad you came off it in the end. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Have you had your ferritin tested? Was it over 100? As far as your doctor, refer him/her to the Mayo Clinic Updated Algorithm on RLS. Perhaps even print it out and give him/her a copy. If s/he won't read it, change doctors.

[boone1805 in reply to SueJohnson]

The lowest dose of ER is 2mg. You can’t taper it. You just stop. I can taper off the .5 though. I want to go back to drug free if I can.

[SueJohnson in reply to boone1805]

I would then switch from the extended release tablet to the equivalent immediate release one. Check with your doctor or a pharmacist as to what this would be (I suspect it would be 2 mg) and how often to take it to cover the whole day. Since you mentioned your symptoms started in the afternoon when you discontinued the ER, you may only need it in the afternoon and at night. After you have done that and it controls your symptoms you can slowly taper from there.

[boone1805 in reply to SueJohnson]

Went to dr today and got blood work for ferritin levels. Also got script for .25. I am going to take .25 when symptoms start in the afternoon, and take .75 before bed and a .25 at 2am if needed. It’s the same mg but spread out. The dr seemed to think this might work and we can taper from here at .125 at a time. This is a reduction from the 2mg ER and .5 instant release I was taking 2 months ago, so fingers crossed.

[SueJohnson in reply to boone1805]

I'm glad you were able to get the immediate release ones but that is reducing from 2.5 to 1.25 which is too fast. I checked after my last reply and the 2 mg ER is equivalent to 2 mg immediate release. On the ferritin you want it to be above 100 and the transferritin saturation above 20%.

[boone1805 in reply to SueJohnson]

I’ve been on the 1.25 for a month now. the 3 days after I stopped the ER was pretty bad but I got over it. I’m going to go down by .125 every 2 weeks if I can. Hoping the ferritin shows something. I’ll let you know how it goes. Thank you for the responses!

[grassgree]

Ropinirole can cause rebound insomnia, especially if you are falling asleep initially but wake up in the wee hours and are unable to get back to sleep.

[olgamarie in reply to grassgree]

What is rebound insomnia? I think I may have this. Please and thank you.

[grassgree in reply to olgamarie]

When I described this (falling asleep after taking the drug but then being very wakeful a few hours later) to my doctor, she said ropinirole was causing it. First you are drowsy and then it reverses and makes you unable to sleep. I don't know how common that is--everything causes me insomnia--but she was quick with her reply to wind down the ropinirole.

[olgamarie in reply to grassgree]

Thank you so much grassgree. I take my Requip an hour before bed, fall asleep and sometimes am up for three or four hours. It leaves you tired a lot.

[grassgree in reply to olgamarie]

Hard to know for sure what is causing that. It wasn’t an occasional effect, it was every night without fail. It felt different than my usual insomnia. At first I started waking at 4:00 am. A week later it was 3:00. When it moved to 2:00 am and there was no drifting back to sleep, I emailed the doc. It stopped when I quit taking ropinirole, although the withdrawal phase was the usual horror story. I didn’t know to taper off.

[SueJohnson in reply to olgamarie]

Have you thought about switching to gabapentin? Up to 70% of people will eventually suffer augmentation on requip according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.

Https://mayoclinicproceedings.org/a...

[boone1805 in reply to SueJohnson]

I have 2 drs who are advising me not to get on gabapetin-say exchanging one bad drug for another.

[SueJohnson in reply to boone1805]

Refer them to the Mayor Clinic Updated Algorithm on RLS or print out a copy for them at Https://mayoclinicproceedings.org/a... If they won't read it, switch doctors.

[boone1805 in reply to grassgree]

This is what is happening to me as well. I wake up between 12:30 and 2:00 and struggle to go back to sleep for more than 30-60 minutes.

[grassgree in reply to boone1805]

This is what was reported on one drug interaction site;Do you have insomnia when you take Requip?

Insomnia is found among people who take Requip, especially for people who are female, 60+ old , have been taking the drug for < 1 month, also take medication Cymbalta, and have Depression. This study is created by eHealthMe based on reports of 17,499 people who have side effects when taking Requip from FDA, and is updated regularly.

I am over 60 and had been taking it for about a month, wasn't taking Cymbalta or suffering depression. The doctor flagged it immediately, and she was right, but everyone is different.

Love the grammar; "people who are female."