I'm speaking with my neurologist in a couple weeks and aim to convince him it's time for me to start tapering off Neupro and increase my Gabapentin dose. Right now I take Neupro 1mg and 400mg Gabapentin, and my RLS symptoms are still an issue at night and often times they start up in the afternoon (legs only). I believe I'm experiencing augmentation cause I never had daytime symptoms till recently. Been on Neupro 1mg for 3.5 years.
I don't think my neurologist will agree with me cutting the patch but I plan to do it anyway. What's the best way to do this? Draw lines on the outside of the patch dividing the patch into quarters, and then cut off 1/4, and apply the remaining 3/4? Do that for a week or two and then cut off 1/2? And so on?
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Yep, that would work. I would wait a couple weeks each time to reduce it, and near the end you may even need to wait longer. A good decision, by the way. You will suffer but in the end you will be glad you did it.
Any idea how often patients go through tapering DAs only to find out Gabapentin or Horizant alone isn’t enough, and so they have to go back on a DA? That’s the one thing that concerns me most.
I don’t think my neurologist is comfortable prescribing short term opioids which is also troubling cause I read these are often needed.
It mainly happens with those who have been on dopamine agonists for many years. And people who has finally gotten off them, especially after having augmented rarely go back on them. There are always other things to try if for some reason gabapentin doesn't work or the side effects for them are too bad. For example Dipyridamole has worked well for some people. If your doctor won't prescribe a low dose opioid, refer your doctor to the Mayo Clinic Updated Algorithm at
I got a full iron panel last month. All levels were good including ferritin. I sent that paper to my doc last month. My doc is respected and works out of a movement disorder center at a hospital here but I can tell he’s not well aligned with Mayo. For example he was reluctant to prescribe Gabapentin and was insistent on Horizant. I opted to try Gabapentin first due to cost, though he did show me a pharmacy program where one can get Horizant for no more than $45 monthly no matter their insurance status.
It's not a good idea to go back to a DA. Augmentation can happen to anyone after any length of time using it (only a month in my case). But the effects of tapering are different for everyone, so no reason to assume the worst. Go as slowly as you need to--you'll get there. Your daytime symptoms should be gone after you get off the DA. Horizant is supposed to absorb better than Gabapentin, but check with that pharmacy to make sure you can continue to get it at that low rate--sometimes you get the first prescription at a low cost, with a coupon, and then it's unaffordable again.
I am also weaning off the Neupro patch. At one point I was using a 6 mg patch, prescribed by an outdated neurologist. Two years ago I whittled down to 4 mg without any withdrawal symptoms, then down to 3 mg last spring. In the summer, I went from 3 mg to 2 mg with a short night. The switch to 1mg was more difficult with 42 hours without sleep and cannabis was suggested by my son, and that made sleep possible. My present neurologist had prescribed gabapentin before I weaned to 3 mg. Presently I take 1800 mg of gabapentin spaced through the day. It also helps with my neuropathy. Also I take one or two hydrocodone tablets to help get to sleep. In January, I started cutting my 1mg patch. My neurologist wasn’t sure it would work, but it did. I had a sleepless night when I cut down to .75. I then waited until I had an infusion before going to .5 mg, thinking I needed my ferritin to be up. That step was another sleepless night and some difficult days off and on. One night I found the patch was partly off and another night it just fell off. I put the half patch back on and covered it with a bandaid and it was good the rest of the night. I’m having hip surgery next week, so will not cut down more until after I’m somewhat stabilized. I cut a quarter of the patch off, straight across the patch, then trimmed the corner ever so slightly so the corners were not a ninety degree edge. I think this helps. When I cut the patch for a .5 mg section, I save the other half for the next day. So already I’m saving prescription costs as those patches are pretty pricey. Good luck with your weaning from Neupro. It feels so good to know I’m getting closer.
Thanks for sharing your situation and the journey you’ve been on with tapering neupro. What’s the reason for trimming the corners so the edge isn’t ninety degrees? Is that important?
On your hip surgery: Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine. Also talk with the patient representative ahead of time. It is a good idea to bring your own medicine, but don't tell them you have it since they will insist on giving you medicine prescribed by the hospital. That way if they don't follow through you can take the medicine you brought. If it would be difficult to get to it, have a friend bring some. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran for anti-nausea. If you join the the Restless Legs Foundation which is in the US at rls.org they have a medical alert card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid. An international membership costs $45.
I have talked with the presurgery rep and surgeon about the RLS. I’ve known the surgeon since he was a kid as he was a best friend of my son, so I know he listened and will follow through. I’ll be able to wear my patch and take the gabapentin that morning, so that’s good. Zofran is what he usually prescribes, so that’s set. I will also bring it up again that morning.I talked to a Medicare person who even suggested I bring my daily meds to be sure I can take what I need. You have given me solid advice in the past, thank you again for the super suggestions.
I trim the corner so the patch lies smoothly on skin. I think a squared corner is more likely to lift up and perhaps compromise the patch. It’s itchy to me and I sometimes scratch the patch while sleeping. That’s why I carefully trim the corners.
Im not sure its safe to cut into the patches. I read it can allow extra doses of the unfiltered medicine to contact your skin. Please confirm the safety of cutting the patches and applying to your skin. Maybe some patches are different but it can be fatal with an fentenyl patch.Im just saying double check with a pharmacist or someone before doing it.
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