Restless Legs Syndrome (RLS) Discussion Board

I am curious about what others have experienced with the Neupro patch as a medication for treating RLS. I had been on Mirapex for about 6 years, but developed a problem with augmentation. In consultation with my doctor, I made the switch to the Neupro patch last December. The transition from Mirapex to the patch was horrible. After about six weeks, I got through that rough stretch. Since then I have had very inconsistent results with the patch. Some days it works well. Other days not at all, and my RLS symptoms on those nights extend from my legs into my arms, which is the worst. I'm wondering if my experience is abnormal or consistent with others on this medication.

goberland, what dose of Mirapex were you taking and what size patch are you using now?

I transitioned from 0.5mg of Mirapex to a 2mg patch and the transition was pretty seamless. As for the patch, it took some time to figure out where I needed to apply it. As for the symptoms extending from your legs into your arms, that is a sign of you have been through augmentation. Recent studies are starting to find out that the changes that occur during augmentation may be permanent. That is why all of the experts are starting to use iron treatments and gabapentin/Horizant/Lyrica before trying the dopamine agonists.

goberland wrote:I am curious about what others have experienced with the Neupro patch as a medication for treating RLS. ...

goberland: Welcome to the RLS community. Lots of help here.

First, my experience with the Neupro patch. (After the SURPRISE of sticker shock). It worked fairly well. I was only able to use it a month or two and then the rashes got so bad I had to stop it. Because it is absorbed through the skin, different parts of the body absorb it differently. Additionally, it is very important that the skin be clean, dry and oil free. Be sure the patch sticks well. Re-read the extensive instructions that come with the patch and be sure to follow them exactly.

Next, your doctor is following one of the generally accepted options for treating augmentation, switch to a long acting dopamine agonist (ie Mirapex ER or Neupro patch). I'm not sure, but I think that is not really the best option. Probably better to change to gabapentin (or its relatives, Lyrica or Horizant). While use of Neupro is "accepted practice," The patient is still on a dopamine agonist and likely to get augmentation again.

Your fluctuating response could be augmentation restarting, but I think it much more likely that you are having variable absorption of the drug through your skin. Its possible you are augmenting AND having variable absorption.

I tried to transition from pramipexole to Neupro because of augmentation and impulse control disorder. However, even at 6 mg Neupro patches, I still could not reduce my dose of pramipexole lower than 0.5 mg. Within a month I was augmenting again, symptoms earlier in the day and it was in my arms. While I did not develop any rashes, the patches itched me like crazy while they were on. I have now transitioned to Lyrica, but am not sure if it is the right drug for me.

Rustsmith wrote:goberland, what dose of Mirapex were you taking and what size patch are you using now?

I transitioned from 0.5mg of Mirapex to a 2mg patch and the transition was pretty seamless. As for the patch, it took some time to figure out where I needed to apply it. As for the symptoms extending from your legs into your arms, that is a sign of you have been through augmentation. Recent studies are starting to find out that the changes that occur during augmentation may be permanent. That is why all of the experts are starting to use iron treatments and gabapentin/Horizant/Lyrica before trying the dopamine agonists.

I was on .75mg of Mirapex when I transitioned to the Neupro patch. My doctor started me at a 3mg Neupro patch, but then quickly moved me up to a 4 mg patch.

Do you know whether you can go from using dopamine agonists to gabapentin/Horizant/Lyrica?

Yes, you can switch. However, in your case, if you are augmenting, the switch will be difficult, with a temporary worsening of your symptoms.

For instance see this post, written this morning, by another member who switched from Neupro to Lyrica:
http://bb.rls.org/viewtopic.php?f=4&t=1 ... 397#p98397

Thanks for the information on switching from DAs to Lyrica.

My symptoms are mostly controlled with the Neupro patch, for the 6 months I have been on it, since Feb 2019, but it is not a satisfactory medication long term, for various reasons.

(My RLS symptoms are intolerable jumpiness in the knees, inability to lie down without getting up, no matter how tired I am, —>>chronic insomnia.)

Before switching to the patch, I was on ropinirole (Requip) at 2.5 mg, for 12 years. This year, my neurologist diagnosed augmentation, and switched me to 1mg Neupro, stopping ropinirole cold turkey. Intolerable nights until increasing to 4 mg Neupro, ameliorated somewhat by taking gabapentin & zolpidem (Ambien).

After about 6 months on the Neupro patch, I’m starting to get rashes, redness, and heat from where the patch is attached. I'm p sure I will not be able to continue with the patch for very much longer.

I’ve been cutting the large 4mg patch into smaller pieces, to find skin areas that I can use it on. It falls off readily on sweaty hot days, even with medical tape, so I have to open another package and apply a fresh patch. (Copay is $50 per 30 day supply.) With gabapentin at 200-300 mg before bed, symptoms are mostly manageable, if I get enough exercise. Plus occasional ambien.

Neurologist says the next option is a drug holiday. Not sure how I can manage this, however. We'll see what she proposes at my next appointment.

I swear....I REALLY want these doctors to feel what we feel for just a week or so...the chronic lack of sleep, the anxiety, the everything, lol. Do they have ANY idea what a drug holiday means???? And is there ANY reason she will not use an opioid - I realize sometimes they are not an option?

You are experiencing the usual problems with Neupro: Rashes and inconsistent relief. I used Neupro for about 2-3 months, then stopped because of rashes. About 50% of Neupro users stop because of rashes. Time to move on. Gabapentin/Lyrica/Horizont OR opioids OR IV Iron.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

Thank you for the sciencedirect link to the Allen et al. paper on IV iron, stjohn. Heavy lifting for a layperson, but it did answer one question I had—which was, why IV iron would be more effective than swallowing iron supplements to increase brain iron. I'll have to read it again a few more times, of course, before my neurology appointment this week. I’ve printed it out to take with me.

Like the OP (Obewan), my experience with the patch has been inconsistent. To find relief, I’ve been increasing my gabapentin intake, on my own, to complement the Neupro. Nice not to have to spend the evening reading while kneeling on cushions on the floor. But the hangover in the mornings is v unpleasant.

I anticipate a lecture from neurologist about self-prescribing. Also anticipate that the next medical option she'll present will be a cold-turkey holiday from all RLS medication. Not sure if I trust this neurologist to know how to take a patient through that, safely.

I’ve looked around here for threads on drug holiday but haven’t found any yet—just mentions here and there. They must be down there somewhere.

Thanks for all the info, everyone.

Be sure and highlight the first sentence of section 5.3.4 on page 34 of the paper ("Ferric carboxymaltose should be considered as one of the first-line treatments in patients with RLS."). Also highlight the algorithm on page 39. Do not highlight other parts. If the doc is interested he/she will read more. Your goal is to get the doc thinking that IV Iron is a good thing. You want to make this as quick and easy for the doc as possible.

stjohnh wrote:Be sure and highlight the first sentence of section 5.3.4 on page 34 of the paper ("Ferric carboxymaltose should be considered as one of the first-line treatments in patients with RLS."). Also highlight the algorithm on page 39. Do not highlight other parts. If the doc is interested he/she will read more. Your goal is to get the doc thinking that IV Iron is a good thing. You want to make this as quick and easy for the doc as possible.

Thank you. Done. I will report back after my appointment tomorrow.

Actually, if my neurologist is completely uninterested in educating herself on RLS treatment, I can always try to switch my care to Stanford's sleep center, as Palo Alto is not that far away (as the crow flies—traffic is another thing altogether).

Update re Neupro and IV iron
Visit with neurologist was positive. She took me off Neupro and substituted .5 mg Mirapex + 900 mg gabapentin, which is working at present.

She also referred me to hematologist & hematologist ordered an iron panel blood test. If ferritin level is <75, hematologist will order IV iron infusion. Neither the neuro nor the hematologist was interested in the Allen et al. paper, but they seemed to be fully informed as to its contents. The highlighted and yellow-flagged paper was with me, for both visits.

Meanwhile, multiple red squares on skin from Neupro are still visible 10 days after the last 4 mg patch—which I had to cut into smaller pieces to fit onto clear spaces on the body parts that the instructions allow. The instructions state that between 40-50% of patients, I think, experience rashes or some type of reaction to the patch, so not too surprising.

Thanks to all, and to stjohnh, for valuable info. Mirapex (generic—pramipexole) is another DA, and will prob produce augmentation, but this may buy me a little time.

Hi Redshoes, It is great that you are getting relief but 0.5mg of pramipexole seems high. From memory the US dose is in aggregates of .125 (it is different here in Europe). My understanding was that the maximum dose recommended by experts for RLS was recently revised downwards and is now 0.25mg. Given that you have already augmented on requip, I would be cautious about remaining long on pramipexole. Hopefully you will be recommended for an iron infusion and this manages your symptoms and enables you to cut down.