What works for me the last 30 years

[Bat3353]

What works for me for the last 30years is a 3mg Neupro patch and at bedtime 3mg Ropinirole I have no RLS symptoms 8 years ago I tried to ween off and it was hells after seeing two doctors one asked why did I want to put my self through that and he was right the positive thing about it was I went from 4mg to 2mg and in 8 years it only went up 1mg NO SYMPTOMS AT ALL. The patches are expensive but it’s come down in price and with the manufacturer discount card I’ve been paying $30 for 90days

[Madlegs1]

You are one of the incredibly lucky people to not get augmentation.

I wish you all the very best for the future.

👍☘️💚

[Joolsg]

You are most definitely in a minority. To have zero RLS on such an extremely high dose of dopamine agonists is unusual.At that high dose after 30 years most patients would be unable to sit still in the cinema or car in the day and Impulse Control Disorder would hit.

I would never recommend anyone else try either of these meds as they are now relegated to 'end of life scenarios' by the new AASM guidance.

Do watch out for signs of augmentation and ICD.

[Bat3353 in reply to Joolsg]

All I can say as a user of these meds for so many years movies long trips sleep no RLS sometime when it feels like a little dismforvi change my patch to morning replacement and at night I’m fine this is what works for me

[SueJohnson]

I sure would not recommend this to anyone.

You are taking the equivalent of 7.5 mg of ropinirole when the maximum is 4 mg so in a sense you have already augmented by needing to increase to that much.Just don't increase it any more.

[SueJohnson]

3 years ago you said you were on it for more than 15 years.

[Bat3353]

I’ve been on this dose for 8 yrs I usually replace the patch before bedtime but on a few occasions I feel the RLS acting up I’ll replace the patch for a few days before midday and it works

[Joolsg in reply to Bat3353]

Have you experienced any ICD (gambling or Impulse spending or overeating or hypersexuality)? On that high a dose the risk increases enormously.

[Bat3353 in reply to Joolsg]

No those are impulsive habits can you say for a fact that it causes it I don’t have any of those

[Joolsg in reply to Bat3353]

Yes. Dopamine agonists MoST definitely cause ICD. And rates are VERY high, and rise with high doses and length of time on Dopamine Agonists. It can happen at any stage.There have been several class actions in the USA for this.

You are the first person I have come across on such a high dose of Ropinirole and Rotigitone who has zero RLS night or day. So you can sit still in the car or a plane journey? That's incredible.

The experts believe that EVERYONE will develop augmentation. It's simply a matter of time.

[Bat3353 in reply to Joolsg]

There was a time like I mentioned I got up to 5mg that’s when I put myself for two weeks of hell and afterward my dose dropped to 2mg that’s was 8years ago now I’m at 3mg I’ve take 10hrs trips to Europe with no problems at all

[Joolsg in reply to Bat3353]

Be careful. When you say 'feel the RLS acting up' - you shouldn't have any RLS in the day.Do read up on augmentation. And here's Andy Berkowski's website. Andy is one of the top RLS experts in the world. He's made a webcast about the Rotigitone patch. And how it 'hides' augmentation but the augmentation always breaks through eventually. Spend a few hours reading the information.

relacshealth.com/

[Bat3353 in reply to Joolsg]

When I was employed and active during the day I never felt the RLS when I retired it became a 24hr issue don’t know if it’s normal I have a friend in his 70s and sometimes I see him stand up because of the RLS

[Bat3353 in reply to Joolsg]

I was told that toward the end of the 24hr it weakens so sometimes I change the time I replace it to keep its effects at max levels if there are desperate people out there that are on oxycodone which I think is worst I would give them a try

[Joolsg in reply to Bat3353]

I strongly suspect you are already in severe augmentation and need to get off dopamine agonists. These drugs actually make the disease itself MUCH, MUCH WORSE. They are the only drugs that do this.Opioids at low dose are highly effective for RLS.

But you need to see a doctor who knows RLS.

You should join the US foundation at rls.org.

Dr Buchfuhrer in California, Dr Berkowski in Ohio and Florida, Dr Ondo in Texas, Dr Earley in.Maryland are all experts.

Someone will know a good doctor near you.

[Bat3353 in reply to Joolsg]

I live in Florida where does , Dr Berkowski first name

[Joolsg in reply to Bat3353]

You are lucky. Dr Berkowski does tele medicine in Florida. relacshealth.com/

Also you can see Dr Festic at Jacksonville sleep clinic.Nura Festic, MD

[phone]

g.co/kgs/2TbMPD6

Both would help you get off Ropinirole/Neupro very slowly over at least 6 months. They'd arrange iron infusions and prescribe Buprenorphine to treat RLS after you're off DAs.

[Lran]

My husband has been on the 3mg Neupro patch and 2700mg Gabapentin for 7 years now and that also works for him. I thank God everyday for this as he also has early onset FTD(Frontal temporal dementia ) so its been rough all the way around. His Neurolgist stated that as long as you stay at 3mg or below, your risk for augmentation is low, (as I voiced my concern about augmentation) if you go above 3mg then the risk becomes very high. His RLS was so bad, his whole body was affected and it looked like he was having terrible full body seizures. He had to have a few surgeries prior and every time when in recovery his body would also go into full blown massive RLS, and they think he is having some kind of seizure. I had to explain to them before the surgery that this would happen. Last time it took 6 peope to try to hold his body down until it calmed down to just legs. I thank God we found a Neurologist that seems to know what he is doing. He has had RLS for over 20 years. The worst was the primpaxol, he had been on 5mg for 9 years (from a different doctor), coming down off of that was pure He**.

[SueJohnson in reply to Lran]

Staying below 3 mg the risk is NOT low.

Is there a reason he is taking 2700 gabapentin as it won't help his RLS while he is on Neupro. If there isn't, then I would suggest he come off it by reducing by 100 to 200 mg every couple of weeks.

I would suggest he come off it before the frontal temporal dementia gets worse as some of the symptoms such as compulsive behaviors are the same as on Neupro so they could be intensified.

He 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 he can switch to ropinirole. Multiply the dose of Neupro he is taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. He will have increased symptoms. He may need to reduce more slowly or with a smaller amount or he may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. He will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as he nears the end. Some have used kratom or cannabis temporarily to help. But in the long run, he and you will be glad he came off it.

On the gabapentin the correct way to take it for RLS is to take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since he is taking more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. Since he is taking more than 1200 mg, take the extra 6 hours before bedtime. Since he is taking more than 1800 mg I would suggest he reduce to 1800 as I advised above. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin"

If he takes magnesium even in a multivitamin or magnesium-rich foods, he should take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if he takes calcium he shouldn't take it nor calcium-rich foods within 2 hours for the same reason.

Normally one would start gabapentin 3 weeks before coming off Neupro.

Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as his isn't or he would never have prescribed neupro at Https://mayoclinicproceedings.org/a...

Has he had his ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. He should have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and his transferrin saturation to be between 20% and 45%. If his ferritin is less than 100 or his transferrin saturation is not between 20% and 45% post back here and we can give him some advice.

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, , dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. 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.

[Joolsg in reply to Lran]

Sadly the neurologist is wrong. Any dose of Neupro causes augmentation and your husband may not be able to convey his distress.I would find a new neuro.

This YouTube video by a top RLS expert, Dr Andy Berkowski, explains about the Neupro patch. And everyone on this site on the patch at 1 or 2mg tells us they quickly suffered augmentation.

youtu.be/Tz7g9sxS0_I?si=DMG...(Not working as expected?)

[Lran in reply to Joolsg]

Thank you for that video. All that was in the video our Neurologist did go over. So we were very aware of all of this going in. My husband has had RLS for over 20 years, which means I have also lived with it. I not only keep a close eye on him for any augmentation, but for any distress. I not only do this visual, but with constant vital taking which would show signs of distress. His doctor’s have been very clear on signs of distress in his vitals. So far not a twitch or any signs visually or vitally of distress. But I am VERY aware of the possibility. The 7 years of peace is worth the risk of the possibility. I do very much appreciate you taking the time to send this video, and I do heed what I gain from this sight. I keep an eye on this sight to see what else is out there that has the possibility of working just in case. Thank you

[Joolsg in reply to Lran]

If you see signs, make sure you find a neurologist familiar with RLS and who will prescribe iron infusions and Buprenorphine when the Neupro patch stops working.