Presumably, if you're reading this your sleep is being disrupted by RLS too.
Last year (due to side effects and worsening symptoms) at my request to my GP, I reduced my Rotigotine from 6mg/day to 2mg/day and (up to) 300mg Pregabalin, which has been very successful and stable. I’ve tried without success to further reduce the Rotigotine using up to 450mg Pregabalin.
I’ve had RLS since my teens. My symptoms are not sited in my leg muscles, which seems to be the norm, but are like electric shocks every few seconds in my hip joints and sometimes discomfort in my shoulders. Not drinking enough water makes it worse. Coffee makes no difference. Alcohol makes it only a little worse.
Four nights ago it was unbearably strong and I discovered that one of the patches was completely detached so at 2am I put on the next day’s 2mg and RLS settled down around 5am.
Since then the RLS has been out of control most of the time and I’ve been unable to get much sleep at all despite daily 2mg Rotigotine and 450mg Pregabalin.
What should I do now? Increase the Rotigotine or try again to reduce/stop it? I would love to stop it but I don’t know how. I reduced from 6mg to 2mg by cutting a little off the patches daily but below 2mg the RLS was bad. The product sheet suggests reducing by 1mg every other day but that would be like electric shock torture.
Can Pregabalin alone replace Rotigotine? For me, Tramadol works once per month
For how long after stopping Rotigotine do the side effects and symptoms continue so aggressively?
Hopefully, if we can pool our experience of this unbearable condition we can help each other to get a good night's sleep.
My sympathy to you all.
Written by
alfieraison
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Get off the rotigotine with the help of an opioid. It will inevitably lead to augmentation. It is a myth that the rotigotine patch doesn't cause augmentation/ has lower rates. It just has a longer half life which masks the symptoms or early signs of augmentation better.
After you have been off of the Rotigotine, you want to either use a gabapentinoid or if it's not very effective, switch to opioids monotherapy for relief.
Consult a neuro at an RLS quality care center for the best treatment.
Are you sure you have RLS? Do you have an urge to move? Does walking relieve it while you are walking.
The pregabalin won't help much until you are completely off the patch and the withdrawal symptoms have settled.
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. 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 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.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine)are no longer the first line treatment for RLS. Gabapentin or pregabalin are. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin." You are already taking the maximum.
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. 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. 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. 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. If you can't get an infusion, let us know and we can advise you further.
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 up-to-date 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, 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.
Also you are taking what many consider the maximum amount of pregabalin. According to the Mayo Algorithm the usual effective dose is 200 to 300 mg. So once you are off the patch for a few weeks and your symptoms have settled if the 450 mg controls your symptoms try reducing by 25 mg every 2 weeks to get to the lowest dose that controls your symptoms.
RLS-UK website sets it all out. How to reduce and the severe withdrawals you will experience.Either ask for 1mg patches and cut in quarters and reduce by ¼ patch every 2 weeks. OR switch to equivalent dose of normal release Ropinirole and reduce by 0.25mg pill every 2 weeks.
450mg pregabalin is the max dose for RLS, so don't increase AND it doesn't stop Rotigitone withdrawals.
Ask for a low dose opioid like tramadol 50mg, codeine 30mg or Oxycontin 10mg and use for 2 or 3 nights after each dose reduction.
The severe withdrawals are worst for the 2 weeks after you stop Rotigitone. You'll get no sleep for days, and severe RLS. However, it improves with each day. So arrange 2 to 3 weeks off work and social arrangements and ask a friend or family member to stay up with you for the first 4 nights as falls are common.
Ensure serum ferritin is above 200ųg/L via iron pills or iron infusion.
Here's the RLS-UK link and Dr Winkelman's talk about reducing dopamine agonists.
Until you get off Rotigitone, you will never be free from severe RLS.
Thank you all so much for your responses which contain a lot of useful information.
RLS-UK’s DA Withdrawal Schedule looks like a brutal ride: I estimate that I’ve been taking Ropinirole or Rotigotine for 25 years or more so I have no idea what my base level RLS is like. In the last couple of months I’ve experienced whole nights of no sleep at all or two consecutive nights with almost no sleep but complete withdrawal looks much worse.
I will push to see a Consultant Neurologist with an interest in RLS. Unfortunately the last one I saw was hopeless and not really interested. I need to get the right help and plan ahead, empty my diary and get this done.
Unfortunately we in the UK are up against the fact that Dopamine Agonists are the ONLY drug licensed for use for RLS. Anything else is prescribed "off-license". I am in the same pickle - saw neurologist to get off Ropinirole and ended up on Rotigotine. I am going to ask for a Pregabalin supplement when my GP is back from her holiday and then try to increase that and reduce the Rotigotine until I am hopefully just on Pregabalin. I need to know first though if the Pregabalin does anything for my RLS (it doesn't work for everyone).
It won't work until you are off rotigotine for several weeks and your symptoms have settles. You might try switching to ropinirole. The equivalent dose is 3 mg. Normally you would reduce by 25 mg every 2 weeks but this may be too much for you. You can 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.
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