Trapped with Neupro

[CowgirlArtist]

I've had RLS since I was 40, 28 years ago. I've been on every medication known to mankind (and a few weird ones also) and been to 18 Healthcare professionals. I have been on so many dopamine agonists... for 20 years. I developed augmentation right away,, although no one realized what was happening at first. I've been trying to get off the Neupro patch for 2 1/2 years. I managed to go from 4 mg to 1 mg with the aid of methadone but am stalled because at 20 mg, I don't want to/can't go higher. Last night I tried Lyrica and had bad RLS all night. I've been on Lyrica in the past and this never happened! I can't take more of it (only 25 mg). I don't know what to do! My doctors have pretty much given up on me.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole.

Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount which would be 1.5 mg in your case. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. 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 but your methadone should help as you reduce the neupro/ropinirole slowly. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

If that is still too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11) 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.

What city and state do you live in? I may be able to give you the name of an excellent doctor.

The lyrica (pregabalin) won't help you much anyway until you are off the neupro. Start it 3 weeks before you are off Neupro/ropinirole although it won't be fully effective until you are off it for several weeks. After you are off Neupro/ropinirole for several weeks increase it by 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.

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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 mg to 300 mg of 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...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[CowgirlArtist in reply to SueJohnson]

Thank you for you extensive and helpful advice. I have some questions though. I am a member of the RLS Foundation and receive their quarterly publication where I read an article regarding getting off Neupro. They suggested Lyrica to aid the process. I'm also working with a Mayo Clinic neurologist (remotely) who agreed to try that. Last night was the first night that I took 25 mg. I had terrible RLS all night! Lyrica is supposed to stop RLS, not trigger it! I had also read that once you are off a dopamine agonist, you should never go back on one or the augmentation would come back worse than ever. I'd been on Mirapex for 15 years (much longer than you should be) when a neurologist put me on Neupro and methadone. I wish he'd never done that. Neupro is awful, still causes augmentation and terribly expensive. It seems I just hit one roadblock after another and have suffered so much in the past 2 1\2 years I've been trying to get off Neupro. I may ask my neurologist about trying the ropinirole. I've tried pretty much every "remedy" out there to relieve RLS, the hot/cold water sounds horrific. I have to be very careful getting in the shower because if the water isn't the perfect temp, I will instantly have RLS. It's so bad, I've had it jerk my leg out from under me and I go down. Thank you again for the quick response!

[SueJohnson in reply to CowgirlArtist]

I'm really surprised the lyrica made your RLS worse. I strongly suspect it was something else as I have never heard of that and you had no problems in the past. I would try it again when you are 3 weeks away from coming off ropinirole.

[CowgirlArtist in reply to SueJohnson]

I know RLS can be unpredictable and impossible to figure out but I can't think of anything at all different that could have caused it to be so severe. I might get my courage up to try it again after while.

[SueJohnson]

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[CowgirlArtist in reply to SueJohnson]

Thanks again. Yes I've had my iron/ferritin levels checked but the numbers were very good.

[SueJohnson in reply to CowgirlArtist]

What was the ferritin number. What is very good for others is not good enough for those of us with RLS.

[Joolsg]

I agree with SueJohnson.Sadly, as you are already on 20mg methadone, there's not much point adding lyrica.

I don't think you'll be able to avoid withdrawal symptoms. They will settle around 6 to 8 weeks after the last dose of Rotigitone patch though and it WILL be worth the suffering, because you'll be free of DAs. Prepare and arrange to take 4 weeks off work & all social occasions for after the last dose of Rotigitone.

It will be hellish, but many of us have done it and are so much better.

Good luck.

[CowgirlArtist in reply to Joolsg]

Thank you Joolsg, I've been through so much the past 2 1\2 years of trying to get off Neupro. I did drop from 4 mg to 1 but seem to be stuck there and still having nightly and daily RLS symptoms. I'm just not ready to stop cold turkey.

[Birdland in reply to CowgirlArtist]

Definitely don’t stop cold turkey! The slower the better. You’ve done great in getting down to 1mg. One of the problems is that the closer you get to zero the more difficult the withdrawal can be. I think the only reason Sue Johnson mentioned ropinirole is because it is the same medication as neupro patch in pill form. The pills can be easier to split and they come in .25mg. Please refer to her equivalence because .25mg of ropinirole is different than .25mg of neupro patch. I feel for you. I have been through this. It took me 3 years to withdraw from 8 mg of ropinirole. Is there an amount of the patch that covers your symptoms a livable amount? One thought would be to go to that amount to keep your sanity, and then start tapering again very slowly while staying with the 20mg of methadone. The general consensus on this forum is that Lyrica doesn’t help with DA withdrawal. We sufferers tend to know more than the doctors, unfortunately. Please don’t lose hope. Have you identified any food, drink or medication triggers? In my withdrawal it was extremely important to eliminate triggers like alcohol and caffeine.

[CowgirlArtist in reply to Birdland]

Thank you Birdland, you are so right that we know more than doctors. RLS taught me years ago (long before Covid) not to trust doctors, I've been injured by too many. I will go back to cutting the patch but it would be very difficult with the holidays coming. No one understands what you go through! Even my husband doesn't understand. I don't talk to my family about RLS anymore because they're all sick of hearing about something they can't relate to. Thanks for your encouragement.

[Joolsg in reply to CowgirlArtist]

I would never suggest cold turkey. Do as SueJohnson advises. Cut the patch or switch to Ropinirole 0.25mg pills and reduce.What I was trying to say was that you need to get off Rotigitone completely as the D1 receptors are up regulated by dopamine agonists. That up regulation drives the augmentation and continues. Even when you're on methadone.

I do hope you manage to get off it.

And remember to file an adverse side effect report via FDA and UK Yellow Card Scheme. It's a 'pinned post'.

The only way to stop doctors prescribing these dangerous drugs is to file reports.

Good luck.

[Doped]

Hi Cowgirl, I feel for you and can identify with your plight. I was on Neuro 2mg for about 4 years and at the beginning of June decided I couldn't cope with the augmentation any longer. I've been cutting tiny slivers off the patch since and I'm now down to .25 of 1mg, I've been around this amount for over a month now and having dreadful, torturous nights as I withdraw but I'll keep going, mainly because of the support I've had on this forum and the promise of calmer waters to come. Good luck with your journey.

[CowgirlArtist in reply to Doped]

Thank you Doped. Over a year ago, I was also cutting the patches down. I was at .5 mg until I had another health problem that messed up my progress to the point where I was back to 2 mg. Now I can't seem to get lower than 1mg. I will try cutting the patches again but I'm always afraid I won.t be able to stop the RLS, ever!

[Doped in reply to CowgirlArtist]

I can totally relate to that, every sliver I cut off the patch results in extreme rebound but if you can stick it out it seems to lessen, relatively, over three or four nights. I'm taking it very slowly as I believe that it actually gets harder when you're nearly down to zero and for a few weeks afterwards. Apparently you feel much better when it's finally out of your system. Good luck 🤞