ropinorole and neutro patch

[Bat3353]

I’m currently on ropinorole 3mg and neupro patch 3 mg a day what is the good and bad I’ve been living with rls for over 30 years I tried getting off it in 2017 and quit after 3 weeks any suggestions

[Joolsg]

Sadly, you know that the severe RLS you're experiencing is caused by overprescription of dopamine agonists. 6mg is over the FDA limit. I know you saw a doctor recommended by rls.org and it didn't go well and you tried unsuccessfully to get off these drugs in 2017.Can you contact Dr Berkowski at ReLacs? He would help you get off these drugs and will arrange bloods etc and ensure you get iron infusions and low dose opioids to help you through withdrawal. Or Dr Buchfuhrer in S. CALIFORNIA. Or Dr Ondo in Texas.

Where are you?

You can start the process slowly yourself by cutting the Patch into quarters and dropping a quarter every 2 weeks. Then, by the time you see a good doctor, you'll be a good way into reducing.

relacshealth.com/

[SueJohnson in reply to Joolsg]

Since 1 neupro equals 1.5 ropinirole, cutting a 3 mg patch in quarters would be reducing by 1.125 mg which is too much to reduce at one time.

[Joolsg in reply to SueJohnson]

You're absolutely correct Sue! I just realised he is on a 3mg, not a 1mg patch. Doh!

[SueJohnson]

Since 1 mg neupro is equivalent to 1,5 mg of ropinirole, you are actually taking 7.5 mg of ropinirole. The maximum amount is 4 mg. Do not cut the 3 mg patch in quarters as that would be reducing by 1.125 mg which is too much as the normal amount to reduce by is .25 mg. Instead ask for 1 mg patches and cut one of them in quarters and as Joolsg said reduce them by 1 quarter every 2 weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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 (25 mg pregabalin) 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. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin 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 take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. 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...

[SueJohnson]

There is Dr Festic at Jacksonville Sleep Centre in Florida who has been recommended and will prescribe opioids if needed. Dr Berkowski is excellent and will do a teleconference (he is not in Florida) but you are better off with one who is actually in Florida.

[Sawbird in reply to SueJohnson]

Can you recommend a doctor in NYC? There seem to be centers and doctors everywhere but here.

[SueJohnson in reply to Sawbird]

I think I may have given you these names before. If I did I would love to know what your experience was with them.

Ana C. Krieger [phone]

Harini Sarva [phone]

These are from the Restless Legs Foundation. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable. They still might prescribe dopamine agonists which you don’t want and/or they might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS

[Sawbird in reply to SueJohnson]

Thank you. I do have those names and am trying to get an appointment with Anna Krieger. I was wondering if you had any direct knowledge about any NYC physicians. I will ask about Mayo Clinic algorithm. I am presently on Ropinerole 4mg ER. Years ago I tried Gabapentin and immediately gained 20 pounds. I wonder if Horizant will have the same effect.

[SueJohnson in reply to Sawbird]

It may not but it is very expensive and the part D insurances do not cover it. There is a prescription savings card available from them, but since you are on medicare you aren't eligible. In stead I would suggest you try pregabalin. Although it is basically the same drug as gabapentin 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.

[SueJohnson in reply to Sawbird]

Have you had your ferritin checked? 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 multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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.

Improving your ferritin is one of the ways to help avoid augmentation. Or are you already augmenting which is why you asked about Horizant?

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate 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, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[HipHop1972]

Hi Bat3353, you are certainly suffering but am afraid to say that taking the Ropinirole and using Nupro patched at the same time is not doing you any favours, nor is the person who has prescribed it for you. It’s a pity that you gave up your withdrawal in 2017 as you would be well free of it now and living a much happier life. All I can advise is you try again by 0.25 mg every 2 to 3 weeks which is what I’m doing and have been since 23 October 2022, was on 6mg Ropinirole now down to 1.75 mg. Yes it’s tough and they say harder to come off than Crack but you have to be determined and I can assure you as hundreds on this forum will that it’s worth it in the end.

Speak to your doctor about it and read the Mayo Clinic Algorithm on RLS and Augmentation.

I wish you all the best as will all us sufferers

[scppie]

As the other posters have advised, please try again and get off these meds. I detoxed last year off of 6mg Neupro which I had been on for six years. I am now medication free which I realize doesn't frequently happen, but I have had relief from many other symptoms which the Neupro was causing outside of the augmentation. Yes, it is excruciating. The last two weeks of the detox I got 2-3 hours of sleep per day/night at best. You can do it!