Uncontrolled RLS

[Busunsc713]

I’d like to report the observations of a friend with RLS whose disorder worsened to the point of not being able to ride in a car without extreme discomfort. The thought of a car ride produced anxiety. Standing or moving relieved the symptoms. In the evening and at night, the RLS worsened. When attempting to sleep, he experienced uncontrollable jerking and became severely sleep deprived, depressed, ….. exhausted. I heard him cry out many times for relief. His general practitioners was unfamiliar with RLS; therefore ……..of Little help. He was referred to a Pulmonologist for his obstructive sleep disorder and at last his symptoms are currently under control. His Ropinirole 1.5mg at bedtime was changed to a Neupro Patch 3mg/24h. Ferrous Sulfate 325mg twice daily was added for an iron level within normal range but too low for RLS. He continued on his previously prescribed Gabapentin 400mg at bedtime. After 2-3 days, his RLS went away. For his sake I hope this is not temporary. I’ve read of the possibility of augmentation on the patch as well. If the patch should ever need to be weaned off….. I can foresee medical mismanagement. Just thinking ahead. Has anyone ever successfully weaned off a Neupro Patch?

[Madlegs1]

Yes-- it is feasible.

It may involve changing medication to one which can be subdivided if the patch is a gel type.

Otherwise it may be cut proportionately and fixed with oxide tape if necessary.

Oh-- and this scenario is almost certainly inevitable. (But don't tell you friend, in case it is self achieving)

Good luck.

[ChrisColumbus]

Yes, while thankfully I've never been on a dopamine agonist and therefore not had to do so, it is possible (and almost certainly will ultimately become necesssary) to wean off rotigotine (Neupro). If he does wean off the rotigotine, most RLS patients require 1200 to 1800 mg of gabapentin daily. There are experts on here who will help on weaning and advise on how and when to take larger doses of gabapentin (or switch to pregabalin).

[Busunsc713 in reply to ChrisColumbus]

Thanks Chris

[SueJohnson]

Yes people have weaned off the patch and I strongly suggest he do it. He obviously suffered from augmentation while on ropinirole and by switching to a 3 mg Neupro patch it was the same as increasing the ropinirole to 4.5 mg and the maximum is 4 mg. So of course his RLS went away - that is it has gone away temporarily.

He has 2 choices to wean off.

1) which is what I recommend is he can switch to 4 mg of ropinirole and then reduce by .25 mg every 2 weeks or so. He will have increased symptoms. He may need to reduce more slowly or with a smaller amount. He should wait until the increased symptoms from each reduction has settled before going to the next one. He will suffer but not as much as he did before 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 will be glad he came off it.

2) He can ask for 1 mg Neupro patch and then cut it into sixths (he can draw lines on the patch to help) and then reduce by 1/6 of the patch as above.

The gabapentin won't help him much until he off the patch for a few weeks and his symptoms have settled. Then he should increase it by 100 mg every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. 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 ." If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and he shouldn't take calcium within 2 hours for the same reason .

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 atHttps://mayoclinicproceedings.org/a...

[m1946 in reply to SueJohnson]

HiI am contemplating changing from 150mg Tramadol to either Gabentine or Pregabalin.

What are the side effects are they worse in either one?

Would be very grateful for your response

The Tramadol, after a few years, is now causing serious itchy skin conditions!!

[SueJohnson in reply to m1946]

Both gabapentin and pregabalin can have side effects. Most go away after a few weeks or they are tolerable. The side effects are pretty much the same for both although often the side effects that can't be lived with on one do not bother one on the other and you can switch directly to find out, The most common ones are a slight balance or dizziness when one wakes up - for me it goes away after I have coffee (coffee can make RLS worse for some people but helps others), tiredness which helps if one has insomnia, a couple pounds weight increase for me and edema which I got at higher doses but which is not a problem .

[Rubynessie in reply to SueJohnson]

Hi Sue

I recently joined rls uk after your advice on augmentation.

My rl was out of control but that was due to uk doctors lack of knowledge and understanding. They increased my pramipexole!!!

I’m now taking one 0.088mg pramipexole and two 75mg pregabalin . My symptoms are mild now but I’ve gained 12lbs of weight . I’m using a food diary and not eating any more than usual?

Would switching to gabapentin help ?

I have osteoarthritis in all my joints and do not want to gain any more weight.

Many thanks.

[SueJohnson in reply to Rubynessie]

You might want to try switching to gabapentin. Although they are basically the same drug except you 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. Multiply the pregabalin amount by 6 to get the correct dose which would be 900 mg in your case. You can switch directly. Since 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 later need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

[SueJohnson in reply to Rubynessie]

If you still have problems gaining weight and need to come off gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks.

[SueJohnson]

Since his iron is low he should ask for an iron infusion as that will more quickly bring his ferritin up and will help with his withdrawal. If he can't get an iron infusion, then on the ferrous sulfate he is taking. He should take it only once a day preferably at night as hepciden is released when he takes it which prevents him from absorbing more iron for 24 hours and for the same reason he should take the iron at the same time each day. He should take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if he has problems with constipation, iron bisglycinate is better. THe should take it at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If he takes magnesium, calcium or zinc, even in a multivitamin he should take them at least 2 hours apart from the iron since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. He shouldn't take his iron tablets before or after exercise since inflammation peaks after a workout, and he shouldn't take tumeric as it can interfere with the absorption of iron or at least he should take it in the morning if he takes his iron at night. If he takes thyroid medicine he shouldn't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. He should ask for a new blood test after 3 months.

Did he have his ferritin tested when he was tested? If so what was it as I may have additional advice. If not he should ask his doctor for a full iron panel. He should stop taking any iron supplements 48 hours before the test, not 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.

[SueJohnson]

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, ice cream, eating late at night, 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, 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, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If he is 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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in.

[Joolsg]

I wish doctors wouldn't prescribe Rotigitone patch after someone has already failed Ropinirole. The augmentation usually happens again within weeks or months. A lucky few can stretch it out to a year, maximum two.Most of the top RLS experts in the USA will not move a patient on to another dopamine agonist after augmentation has hit. They know they're delaying the inevitable.

However, let your friend have a peaceful Christmas, but do advise them to research extensively. At least that way, they can make an informed decision.

If they then decide to get off the patch, they can follow the advice on here.

[davchar23]

The advice given already is first class and I relate it to my personal case.

Having been prescribed gradually increased rotigotine patches (max i had was 4mg patches) when other DAs failed i suffered severe augmentation (i agree it is probably unavoidable) and came off the patches relatively quickly (4mg to zero in 2-3 months) but then had to use strong pain killers as a barrier to RLS and i am now o low dose buprenorphine after oxycodone not sufficient to block RLS and allow dopamine receptors to recover

Davchar.

[Shakespeare1564]

sorry, no experience except that I was offered it and rejected it after reading comments on this site. I am fortunate that my problem is nowhere near as bad as that of many of the contributors on the this site.

[Sleeplesniights]

I was on Nero patches for a year but wanted to come off them.

I did it gradually over a couple of weeks and was fine

I now take cbd oil and it works for me

[Randfan]

Based upon this website, augmentation from dopamine agonists are an inevitability. For me, and I have had RLS for over 40 years and it is aggressive manifesting itself not just in the legs, but spine and arms, I have been on 2mg of Ropinrole for about 15 years. I realize each of us are different. I also supplement with Gabapentin. I have a nightly watch reminder to take the ropinrole at 7:30pm. If I am more than 30 minutes late, it is like pain management and the RLS is much more aggressive and difficult to subside. So, when that happens, I take 900 mg with the ropinrole as soon as I am able to. I am not looking forward to the day of reckoning, augmentation at 68 years old, but for now, so far so good.

[Simkin]

I was on neupro patches for years until, like all other RLS medicine, it wore off.Coming off the patch was hell because in those days we didn't know about weaning off gradually.

You just came off the whole patch immediately.

My neurologist said I needed a break between neupro & gapapentin for as long as I could stand it.

I only lasted 2 days before starting on gapentin.

Nowadays we are aware to wean off gradually.