I need your help 😢

[Hotrodder]

I have been on ropinirole for about 8 years. I started out with 1 mg at night and after a few years it progressed to 1 mg in the morning, 1 mg at 3 pm, and 2 mg at 8 pm to regulate my RLS. About 6 months ago I began to wein off the Ropinirole. About 3 months ago when I got to 1 and 1/2 mg I started to include Gabapentin with the Ropinirole. When I got to 600 mg and 1/2 mg ropinirole at 5 pm and then 300 mg Gabapentin with 1 mg ropinirole at 8pm I started having augmentation. Now besides restless leg, I am experiencing severe restless arms, shoulders and a week ago it has augmented to my face. What can I do to reverse the effects?Thanks

Hotrodder

[DesertOasis]

Hi Hot! Here’s what I would do if I were you. 100 to 200 mg of Tramadol taken at night when you can’t sleep. Also, take 50 to 60 mg of ferrous bisglycinate on an empty stomach about two hours before bed. Doing this completely rids me of RLS in 1.5 hours for one night and many others on here. Here’s a recent member of the “iron man club.”healthunlocked.com/rlsuk/po...

I would also take magnesium glycinate by day to help shore up your down-regulated receptors.

The key, of course, is the Tramadol. The iron and magnesium alone is like whistling in the wind once you’re completely off the DA. Take the Tramadol for about three months after you’re completely off the DA then think about switching to 60mg of codeine. The goal is to eventually only need iron at night and magnesium by day.

[Madlegs1]

As you say--- you are suffering augmentation, and need to get off the Ropinerol.

You are doing the right thing, but need to take it slowly and by as small amounts as possible.

Almost any of Sue Johnson's replies to many posts on this site will give you the way to go.

Until you have cleared the DA out of your system, you won't get the benefit of alternative medication.

Good luck.

[SueJohnson]

Instead of coming off ropinirole as advised 6 months ago you have increased what you take from 2.5 mg to 4 mg so now you are at the maximum and will have a longer harder time to come off it so please don't increase it any more. I will give you the advice I gave then.

First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole , reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)

Most of the side effects 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at

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

You may need to switch to a new doctor if s/he doesn't go along with this or won't give you the low dose opioid that you will need. If you tell me the city and state where you live I may be able to give you the name of a doctor who is more knowledgeable.

You previously said gabapentin didn't work for you. You might want to try pregabalin instead when you are down to 3 weeks from coming off ropinirole. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.

If pregabalin gives you similar side effects then instead of oxycodone which has to be taken every 4 to 6 hours or you will suffer mini withdrawals I suggest methadone or buprenorphine.

[Hotrodder in reply to SueJohnson]

I have not increased the Ropinirole. In the last 6 months I went from 2.5mg to 1.5mg slowly as your advice. However, 3 months ago I did add Gabapentin along with the Ropinirole. 600 mg Gabapentin and .5mg of Ropinirole at 5 or 6pm and 300mg of Gabapentin along with 1mg of Ropinirole at 8 or 9pm. This is when all the augmentation started. Is there any chance combining the 2 has excelerated the augmentation?Thanks

Ron

[SueJohnson in reply to Hotrodder]

I'm sorry - I saw what you said "after a few years" and then missed when you said 3 months ago. I guess I am having brain fog or answering too early in the morning when I first get up and am only half awake.

That's great that you are now down to 1.5 mg !!! I know it is not easy.

No combining the too won't accelerate the augmentation. It just gets harder as you get closer to being off it. I would go back up to 1.75 mg ropinirole, and let your symptoms settle. Then get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Or ask your doctor for a low dose opioid to help you wean off it. Print out the section of Mayo Updated Algorithm on RLS to show him and emphasize you only need it temporarily to get off ropinirole. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

[Joolsg]

I would repeat the good advice you were given 6 months ago.Don't ignore it this time, please.

You have increased your suffering by increasing Ropinirole.

You will never be free of severe RLS unless and until you get off Ropinirole. All dopamine agonists worsen the disease.

[SueJohnson in reply to Joolsg]

That was my mistake. He didn't increase it. I misread what he said.

[Joolsg in reply to SueJohnson]

🤭. Hopefully continuing to reduce Ropinirole will eventually help.

[RLSAndy]

Hey - the advice everyone has given me has saved me. Im still not in the clear but on my way, im down to .5 ropiniHELL atm as of last night with 450mg pregabalin. For me personally i take all of it at the same time, 30 mins before bed with 60mg codeine, i wake early at 5am when meds seem to wear off but going to bed early helps with this. The codeine is the one saving me right now but its not easy to get in the uk from Drs, im lucky at as i can ‘acquire’ some.

[Earlyriser13]

I would try coming off ropinirol completely, I had terrible augmentation with this drug. I found withdrawal was the worst experience I’ve ever had. I eventually moved to pregabalin 300mg which took a while to have any effect, so much so that my neurologist added tramadol 100mg . Things eventually settled down and I’ve been on this combination for a long time now. Alcohol does reduce its effectiveness though so be careful. I take my medication about two hours before bed time.

[Birdland]

The good news is that you are headed in the right direction. The bad news is that the closer you get to 0 ropinirole the more difficult withdrawal will be. Perhaps you need to slow down on your tapering. It isn’t easy but you will get there. Unfortunately Gabapentin won’t help much until you are ropinirole free. But as was said, low dose opiates can be of great help to calm extreme RLS that is likely to come with DA withdrawal. Best of luck.