I have had Restless Legs now for many years and in the beginning was given several drugs.
Many years ago I went to see Dr Fackrell privately in Bath and he diagnosed me as having severe restless legs and put me on Rotigitine Patches, which over the years have been pretty good.
I now seem to be regressing and my restless legs and arms are not at all getting any better.
I don't know how other suffers feel, but my illness is literally unbearable. I have heard that some people get tingling sensations in their legs, well I wish I had that instead.
I have a build up inside me which grows in intensity resulting in a spasm causing my legs to kick out or my arms.
I hope I don't sound like a Hypocondriac but I also suffer with other ailments such as AF and a mild leaky heart valve. I am also awaiting a prostate operation and have had a Knee replacement and ankle fusion because of Psoriatic Arthritis.
All in all I am a bloody mess and get very depressed about it all.
I cannot go to cinemas or live shows because I cannot sit there for more than a few minutes.
I cannot watch tv whilst sitting up and usually lay on the floor to get any sort of relief.
Because of the Patches in combination with other drugs for my heart and water works, I started to get Narcoplexi, and must be careful when I drive, so I now know to pass driving far, to my wife.
I was given different tablets when this illness started over twenty years ago, but they were of little use and only the patches seemed to work.
I am 75 years of age and a right misery.
Can anyone suggest another way to stop these severe spasms
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Gonzo123
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Dopamine agonists - pramipexole, ropinirole and rotigotine - used to be first line medications against RLS, but no longer are amongst RLS experts because of eventual Augmentation for most:
I can see looking back that it was suggested that you come off rotigotine 8 years ago, but there was not as much knowledge or such good advice on the subject at that time.
There are many on here who have gone through this and can help you with advice on coming off ropinirole (SLOWLY) and switching to a gabapentinoid or a low dose opioid. Look for posts from e.g. SueJohnson , Joolsg and others.
You are suffering from augmentation which means you must come off the Neupro. What size patch are you using?
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. 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.
To come off Neupro (which is ropinirole in a patch form) , reduce by .25 mg ropinirole every 2 weeks or so. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction 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.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 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 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." 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).
If you find the gabapentin or pregabalin doesn't work, your next choice would be an opioid. I recommend buprenorphine since that lasts 24 hours.
Have you had your ferritin checked? If so what was it? 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 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a...
Sue, I am on 6mg Rotigine Patches. I am on methotrexate and folic acid for arthritis. I am on Rivaroxaban, Flecainide and Oxybutynin for heart problems. I am on Mirabegron and Tamsulosin for water works.
Are you suggesting reducing my Rotigitine gradually before I start gabapentin or pregabalin if the doctor will give them to me or the opioid. Surely I will be in a state of absolute hell because if I accidently miss a patch now all hell lets loose for hours.
I haven't had my ferritin checked for a long while I think.
I am so afraid of going to the doctors time after time it is embarressing.
I do not drink alcohol very much these days but I am quite a big eater I must admit.
6 mg rotigotine (neupro) is equivalent to 9 mg ropinirole and the maximum for ropinirole is 4 mg so you are exceeding the maximum dose.
There is no point starting gabapentin until you are within 3 weeks of being off rotigotine as it won't help so will just be a waste. And unfortunately you will suffer but much much less than when you forget to put on the patch. You can do it. I have faith in you and we are all here to help.
All of your medicines are fine for RLS except possibly Tamsulosin - a few people have said it makes their RLS worse. But at this point I wouldn't worry about it.
You can. I would also print out a copy of the Mayo Algorithm to give him/her. However since you are in the UK your GP may very well say s/he doesn't pay attention to anything from the US. I hear that a lot on this forum. from doctors.
What medicine are you taking for your heart problems? And is it just AF or also high blood pressure. Many of the medicines for this can make RLS worse. If you tell me what you are taking I may be able to give you a safe substitute. The same goes for any other medicines or OTC ones you are taking.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, fennel, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Classic augmentation. Rotigitone,like Ropinirole and Pramipexole, is a dopamine agonist. These drugs are miraculous at first, then the drugs turn on us and increase the severity of the disease. It's extremely common, and according to a top US expert, Dr Christopher Earley at Johns Hopkins University in Baltimore, it will happen to every person taking them.You are not alone.
UK doctors still prescribe the Rotigitone patch, as they mistakenly believe it is less likely to cause augmentation. That isn't true. It just takes slightly longer for it to happen.
Dr Fackrell in Bath is NOW aware that the rates of Augmentation are very high and will help you get off this poison.
Most people on this website have done it.
It isn't easy. Experts say it's harder than getting off heroin. All I can say is that it was the most difficult thing I've ever experienced.
Start reducing now. You cut a 1mg patch into quarters and you reduce by a quaryer patch every 2 weeks. The RLS becomes more severe with each dose reduction and you will probably neec an opioid to settle the symptoms.
Dr Fackrell would be able to prescribe low dose opioids to get you through.
Once off dopamine agonists, your RLS will settle and return to what it was like before you started dopamine agonists.
If raising serum ferritin above 100ųg/L or preferably 200ųg/L doesn't improve your RLS, you will need medications for life to control your symptoms.
After dopamine agonists, most doctors prescribe either pregabalin or gabapentin. RLS UK website has all the dosing and timings.
Consider joining RLS-UK to help us force the medical profession to learn the basics of this disease, and improve treatment.
Often, dopamine agonists cause permanent damage to our dopamine receptors and then, pregabalin and gabapentin are not very effective. The RLS is then regarded as refractory and low dose opioids work well. They do not cause addiction (unless there's a history of abuse) and patients stay on the same dose.
Can I ask whether you experienced over spending or gambling or overeating while on Rotigitone? These drugs commonly cause Impulse Control Disorder and people have lost homes, jobs, marriages because of it.
Dr Fackrell should have warned you explicitly about the high risk of this happening.
There have been hundreds of successful claims against UK doctors for failing to warn patients about this.
Thankyou so much. I am thinking of going back to see Dr Fackrell in the near future because I don’t think my GP will prescribe any opioids. A letter to them from Dr Fackrell might change their minds. I have other health problems which seem to have all come together of late which I am dealing with unfortunately.
I saw Dr Fackrell last year and he was sympathetic and helpful and I’m sure he will be again, especially with much better awareness now of dopamine agonists and augmentation. There is a way forward as described by Sue, Jools and others and it may take a bit of time and there will be some sleepless nights but many people have reported symptoms declining as they have gradually reduced the dosage. At 75 all of us have a variety of things going wrong and doctors are well aware of that and it’s their job to help us through it. You are doing absolutely the right thing by getting help when you need it and not letting things get worse. Hopefully in a few weeks or months you will see things start to improve. All the best.
I will defer to Sue, Jools, ChrisColumbus and others who have been extremely helpful to any and all on this site. But, based on my own experience, I wonder about implying that adding an opiod during withdrawal from DAs is only something to consider if things get really bad? I'd advise getting a buprenorphine Rx immediately as one starts withdrawal. I understand that opiods have side effects. But I can't imagine tapering off DAs without one. Why suffer any more than you have to? Add to this equation the fact that DAs can damage one's dopamine receptors long-term, making gabapentinoids not work for these people (See Dr. Berkowski's article referenced elsewhere here). Rather than "toughing it out" during a long tapering process, then hoping gabapentinoids work for you afterwards, doesn't it make more sense to try to make the process as easy as you can? I understand that everyone is different, and that my own experience in getting off Pramipexole is clearly an outlier in being fairly easy. But I see no reason not to try buprenorphine first in this situation.
I was on neupro patches for years & found it a wonder drug until I started suffering from augmentation.I am now having success with gabapentin & low dose buprenorphine.
Do try suggesting the Mayo Clinic algorithm to your GP.
I live in the UK & my GP was only too happy to read the article.
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