Rotigotine

[KickingOff]

Does anyone have any experience of Rotigotine as a treatment? I have just come off Ropinorole but my RLS is getting worse by the day. I have virtually no relief from it day or night and desperately need to find the best treatment with the least side effects. According to my research Rotigotine has only very mild augmentation and, since I am suffering practically 24 hours a day anyway, how much more augmented can it get!?

[Madlegs1]

It does sound like you are experiencing augmentation from the Ropinerol. That will not change by going on to another dopamine agonist. You will continue to feel worse .Please read up all you can about augmentation. And immediately start cutting down on your rotigotine. By very small increments and very very slowly. If it is a patch, find out if you can cut it into pieces ,without affecting the dose.

There should be pinned posts on this page about augmentation. Or just search for it on the search button .🧐

[Joolsg]

Did you stop Ropinirole because it wasn't working OR due to augmentation? If the latter, then sadly, you may augment again fairly quickly and will need to get off all DAs. I've just posted the latest algorithm by the Mayo Clinic- have a read and you'll see the rates of augmentation are higher than most think.

[KickingOff in reply to Joolsg]

Thanks. I'll have a look at that.

[Abookwriter2 in reply to Joolsg]

Joolsg, what would he take instead of a dopamine agonist? Thanks

[Joolsg in reply to Abookwriter2]

Once the DAs have failed, the meds that help are either the Alpha2Delta ligands ( pregabalin, gabapentin or Horizant) or a low dose opioid. In the UK it's difficult to get Temgesic or Buprenorphine ( very effective opioids for RLS) but quite a few people are now taking them after persuading their GPs.You still have to go through withdrawal from the patch first. Reduce by 0.25mg every 2/3 weeks by cutting 1mg patch.

[Abookwriter2 in reply to Joolsg]

I don't do well with Horizant/gabapentin so methadone it is!

[Joolsg in reply to Abookwriter2]

Methadone seems to be the most effective opioid. Have a look at Dr. Winkelman's opioid study. Just wish doctors here in the UK would prescribe it!Let us know how you get on.

massgeneral.org/rls-registry

[Parri01]

I have been on rotigotine for about 10 months now and it's very good for my rls, when my neurologist put me on it, I was very reluctant because of the side effects, but I have not had any of these, if I forget to put on a patch, boy does my rls kick in like I'm playing for England,, I'm on the highest dose, 6mg patches, best thing I've had for rls. I do still get it, even when on the patches, but not as much as when I didn't have them.

[LotteM in reply to Parri01]

Parri, are you and your neurologist not aware that the highest recommended dose of Neupro/rotigotine patches for RLS is 3mg. This means you are on twice the highest dose. And, indeed, augmentation is supposed to be lower on rotigotine than on the DA pills pramipexole and ropinirole, but researchers presume that that is because the 24h patches mask one of the telltale signs of augmentation: daytime symptoms.

I suggest you start informing yourself. You may have to start with the newest paper on RLS treatment published in the MayoClinic proceeding, posted yesterday nu Joolsg. And prepare yourself for having to change medicines and the long and often difficult route of reducing the rotigotine and finding another non-DA effective medicine. Sorry not to be more positive.

Have you looked into your iron status? If not, start there. It is tue basis of all RLS treatments.

[Fangs]

Hi I also was on Ropinirole 4 mg per day and I had to come off it as it wasn’t doing anything at the end I am now on Neupro 3mg patch I started at 1 mg but after a couple of months I had to increase it to 2mg wich was fine for 4 months but it started to work less and less so my doctor gave me 3 mg per day but I am now suffering with irritation of the skin and blisters

I have found that it’s not as bad if I put the patch on my upper leg or backside but I have thought about asking my doctor if there is an alternative to this brand that doesn’t have any side effects

But to be honest it’s helped me with my RLS but it hasn’t helped me with my bad temper I get irritated very quickly but I don’t get agresive I have also noticed that my appetite for sweet things have increased

I must also say that I am on Tramadol and have been for about 15 years it’s for spondylitis in my neck and spine

[martino]

I have been using the 2mg Neupro patch for a few years and, based on what happens if it falls off, it definitely helps control my legs. I am perhaps not the best person to comment as I also take 600mg of Pregabelin and 200 mg of Tramulief.