My GP referred me to a movement specialist for my RLS. I had already been referred to a neurologist but waiting lists are much longer & I only waited 6 weeks for my appointment with the movement specialist.
It ended up being a telephone consultation due to COVID-19 but essentially he took me off ropinerole & put me onto neupro patches. So apparently ropinerole only gives relief for RLS for 6-8 hours after taking. The horrific side effects of you suffer them are because you get the full dose in a quick hit, & if you suffer during the day whilst sitting at your desk, or traveling, or visiting the cinema etc there is no coverage in your system.
The patches are apparently 24 hour coverage, the dosage is released slowly over that period so in addition to being symptom free around the clock, all the horrific side effects I was suffering have vanished. I’m on week one && the dosage has had to be increased but I’m starting to adjust & beginning to feel better. Supposedly augmentation is less likely with these too.
I’m trying not to get my hopes up as it sounds too good to be true. No RLS symptoms. No sickness, headaches, dizziness & constant heavy feeling from the medication. No having to delay taking my tablet until I’ve finished my meal & wine in a restaurant because I can’t eat or drink alcohol once I’ve taken it because I’ll throw up. No having to stand up by the table in that restaurant, or stand at the back in a cinema or theatre because my legs are on the move!
Life would be normal! I’m 7 days in & keeping everything crossed! Anyone else on these patches?
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nosleep1969
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I think you hit the nail on the head with "augmentation is less likely with these too.
" and "I’m trying not to get my hopes up as it sounds too good to be true."
I presume that you are aware that rotigotine is a dopamine agonist like ropinirole and pramipexole and these medications in the majority of cases eventually cause augmentation. RLS is a condition related to the circadian rhythm, i.e. comes on in the evening to begin with then starts onset earlier and earlier, often caused by the dopamine agonist medications themselves. Having to increase the dosage is another sign of DA use.
Having said that, I think it's generally felt that if your body can cope with the patches it is probably the best DA to be using. I have been using it for just over two years now. The biggest problem I have with it is the occasional skin reaction. However, I feel it is inevitable that I will eventually suffer from augmentation from it.
Have you had your iron levels tested? Do you take any other medications for other conditions as a number can make RLS worse? Do you avoid common RLS triggers such as caffeine, alcohol, and nicotine?
Hey, thanks for the reply. I am doing all the things I think I should be doing. Iron supplements, vitamin D, minimal caffeine/alcohol etc.
I haven’t had any skin irritations yet so hopeful I will continue to get some relief. Xx
Hi, as YodaDog says, quick off the mark today!
Don't get your hopes up.
Ropinirole does work - - - at first.
Then it starts to fail.
Sorry about the lecture, here it goes.
RLS is a officially classed as a "sleep-movement" neurological disorder (International Classification of Diseases version 11).
This is becasue it is a "circadian disorder" i.e. it happens in a 24 hour cycle. The RLS diagnlostic criteria identify that RLS occurs at night or is worse at night.
One theory for this is because it is a dysfunction of dopamine cells in the brain and when dopamine levels get low, at night, then symptoms start. The dysfunction is NOT a lack of dopamine, it's a lack of dopamine receptor sites.
Dopamine agonists (DAs) such as ropinirole can initially correct this dysfunction in the short term and are only really needed at night. However, like all DAs, in the longer term, they reduce the number of receptor sites and make the RLS WORSE.
It was once thought that using a slow release DA, such as the Neupro patch is less likely to cause this. This may be true if the patch was the first DA to be tried. However, in your case, it wasn't the first to be tried and the damage is already done.
Spreading the dose out over 24 hours might seem a good idea. Actually, what it means is that because the dose is spread out, it doesn't reach the same level as it would do if you take an immediate release version. As a result, it may be that if you take an immediate release version at night, you will have a higher level in your blood when you most need it, at night. With the slow release patch, you won't. It might not work at all!
The idea of the slow release patches came for painkillers, where relief is needed over 24 hours, not just at night.
Another reason that doctors sometimes switch from an immediate release DA to Neupro is because people say their symptoms are happening earlier in the day.
However
If an immediate release version is starting to "wear off" early, it means it's losing effectiveness. This is what happens with DAs after a while.
If symptoms start to happen earlier then this is a sign that "augmentation" is occurring. This is what loss of effectiveness leads to and it's quite common.
In which case, although switching from one DA to another, specifiocally the Neupro patch might provide sone short term relief, because ropinriole has already failed, then the patch is going to fail more quickly
All DAs lead to loss of effectiveness and augmentation.
I find it remarakable that so many doctors don't appear to know about the consequences of using DAs nor seem to be aware that there are alternative medicines.
However, it's not suprising that they don't tell you about the other things that can be done to relieve RLS, which really, should be tried BEFORE resorting to medications or at least, at the same time.
Thanks Manerva, for the reply & for the links. My biggest frustration, along with everyone who suffers this condition is the lack of knowledge & support from the medial profession. Nothing other than ropinerole, patches or gabapentin have been offered to me. I had to beg my doctor to give me iron supplements & that is prescribed at a low dose!
If anyone knows of a respected expert in the UK I would gladly pay privately for a consultation. Xx
Sadly there don’t seem to be any experts who are fully up to date. Manerva has explained the problems with dopamine agonists in more detail than you’ll ever hear from a UK neurologist. Recently someone on here reported that Dr Guy Leschziner at Guy’s hospital London had proposed the Neupro patch to them after they had already augmented on Ropinirole, like you.
Luckily they knew this was not good advice from reading all the latest research on this site so they refused. I had always believed Dr Leschziner was one of the more knowledgeable Neurologists in the UK so I was disappointed.
As Manerva advises, the patch is useful at very low dose as a first dopamine agonist but it will eventually also lead to augmentation and the inevitability of switching meds further down the line.
I hope you can get a few good years on the patch but do look out for warning signs. Do NOT increase the dose if it becomes ineffective.
I have been using the patch for a while now and it worked well for me. I couldn’t get on with pramipexole or ropinirole but have no problems with it. I change the patch at the same time each day and am careful with site rotation. I expect the effectiveness to lessen over time but it has been very helpful.
I started on ropinirole but slowly had to keep increasing the dose, then I found this forum and realised that I had reached the stage of augmentation. I started to wean myself of the ropinirole without any help or other drugs, it was hell towards the end. Luckily my GP had already prescribed Neupro for me and that saved me. However Neupro is a DA and now after 2 years I know I need to wean myself off again, this time very very slowly and my GP has agreed to prescribe pregabalin on a low dose but increasing a I cut down on the neupro.
I expect to take 6 months or more to get off the neupro. I agree that DA's are very effective to start with but as Joolsg has said do not increase the dose, get off Neupro as soon as you feel the need to increase the dose, the higher the dose the more traumatic it is to get off it Best of luck for the future I hope the neupro lasts a long time for you without problems
Hi. I was on NEUPRO for a year (.5 mg). Worked like a dream - legs calm, no side effects except... about 2 months in I was awake until 5 am every night. Not legs, not anxiety, just wide awake. Finally checked in w the neurologist - he said he had NEVER seen at such a low dosage (a quarter or less of Parkinson level), but the inability to sleep at night, rather only during the day WAS a reported side effect. I was sad - it was the most effective. But I didn't want to become a Vampire. It is a rare side effect though and other then that worked wonders. Good luck!
I too went from ropinerole to Neupro and it was great. Until I kept having to increase dosage, eventually to the max. Then augmentation set in and the daytime issues were terrible!!! Eventually was prescribed Gabapentin. Found an RLS specialist at USF and was weaned off everything and prescribed low dose methadone, 4ml, and it is awesome! Just be careful with any dopamine agonists meds.
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