Has anyone used Neupro over an extended period of time (2-years or more) to determine its relationship to augmentation? I found an article that indicates that over a 5-year period the augmentation of Neupro was significantly reduced compared to Ropinerole. However, a deeper dive found that the study was conducted by the drug manufacturer. Not necessarily a tainted study but possibly biased. Anyway, I am looking for experiences of others.
thank you.
Augmentation frequency with the rotigotine (Neupro) patch is usually said to be slightly lower over 5 years than with pramipexole and ropinirole, however it's still a dopamine agonist and will *eventually* give problems. And then you will have to go through the long process of withdrawal.
Yes, there are forum members who have been on one or other of the dopamine agonists for years, haven't suffered (or recognised) augmentation, and see no reason to come off - but they are in the minority. Experts are now coming around to the view that dopamine agonists will ALWAYS eventually cause problems, and that they should be reserved for end-of-life scenario treatments.
Both international experts and the most experienced forum members here will recommend that if you need medication to control RLS (which if your dopamine receptors have been damaged by previous use of ropinirole you probably will) you should be looking at gabapentin, pregabalin or a low dose opioid.
I understood and agree but I continue to be hopeful that something other than DA's and opioids will be found for those of us that Gabapentin and related drugs result in such sedation and poor quality of life experiences that they are pretty much a no-go. Have you heard of such a drug?
I hadn't read that you had tried gabapentin, but noted that you mentioned your father's experience. Experiences are personal and can also be tied to size and timing of dose. Like all drugs gabapentin and pregabalin have side effects, but most diminish over time: you'll have read SueJohnson's experience. They don't work for everyone - what does - and some can't get past the initial or ongoing side effects.
Some that can't tolerate the gabapentinoids have found low dose opioids to be a life saver - people like Joolsg and Shumbah. The problem seems to be more getting the drugs prescribed...
Other drugs do get mentioned - such as dipyridamole - but while some find something works, others are adamant that it doesn't help them. There is a (Italian) study recruiting subjects to test dipyridamole at present:
journals.plos.org/plosone/a...
As to other routes: some like Eryl and me control RLS by avoiding dietary and medication triggers - but I at least never took a DA, don't know about Eryl. I only have to be careful about a few things; Eryl has many more restrictions. But others have tried all sorts of diet to no effect.
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...
But you would be better off once you are off ropinirole to try gabapentin or pregabalin and give it a chance rather than be afraid of side effects you probably won't even have.
Sue, you may be right about my fear of unrealized side effects. Thank you for the dipyridamole recommendation. I am not familiar with it and will review the research.
Dr Berkowski has confirmed that the paper talking about low rates of Augmentation was flawed. He also says it's harder to recognise augmentation because it lasts 24 hours, so daytime symptoms- the first sign of augmentation, don't show up as early as with normal release DAs.
It refers to a 2011 study by Oertel and a study by Trenkwalder in 2017.As you correctly point out, it's sponsored by the drug company.
Claudia Trenkwalder has now changed her position and talks against ALL dopamine agonists.
Anyone on here that has switched to the Neupro patch quickly experiences Augmentation.
That's what I was afraid of. Thank you for the quick response.
youtube.com/watch?v=Tz7g9sx...
Thank you, I watched several of his videos yesterday. Very helpful.
youtu.be/Tz7g9sxS0_I?si=2Qr...
For those members here in UK, the link doesn't work, so I've guessed you have put up Dr Berkowski's video explaining that the Neupro patch doesn't stop augmentation.
Doesn't work in the US either.
Here's another medication (Lacosamide) mentioned in a post a few weeks ago. A very limited study, but looks promising?
sciencedirect.com/science/a...
Thank you. I saw the study was from 2013 so I assume it did not reach the tipping point of success or it works for those that nothing else will.
The improvement seemed pretty dramatic for 7 out of the 8 participants (yes - a really small study). But I believe it’s a fairly new drug (or it was in 2013). Wonder why there hasn’t been more studies?
Getting off Ropinerol
Experience with Neupro?
Coming off Neupro patch
Ropinerole to Pregabalin
Going off of ropinerole
